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The New Normal Takes the Cake: American Children and Eosinophilic Esophagitis

FlamingBirthdayCake By Judy Converse

How many kids do you know who would turn down a birthday cake? Few, if any.  But there are now millions of kids in the US who must, due to life threatening anaphylaxis from foods, dangerous food allergiesgluten intolerance, or a painful condition called eosinophilic esophagitis (EE) – all conditions that have risen dramatically in the last twenty-five years.[1]

How many moms do you know who would mow you down with a tractor if you suggested their kids reject a fake birthday cake? Apparently there are a lot of them, and I made them furious with a recent blog post on this topic.  In my pediatric nutrition practice, I’ve worked with kids with EE diagnoses. And, with kids who have severe food allergy, growth failure, juvenile rheumatoid arthritis, gluten sensitivity, asthma, and autism - all conditions that usually involve inflammation of some sort.  These problems can overlap, when it comes to nutrition interventions. My own son, now 14, has jostled multiple food allergies and sensitivities since infancy. Still, I had never heard of the fake cake strategy.  For kids with EE who simply can’t eat food, a prop cake is a meaningful and important symbol.  A small niche has grown to serve these kids inedible cakes made of playdough or foam. These cakes are vehicles for candles, wishes, hopes, and dreams – but not ice cream, forks, or spoons.

So why the mom-rage? Because the last thing a parent wants is to be judged or criticized. Especially parents who are embroiled in difficult, frightening, expensive, and uncertain journeys with their children’s health, like EE. By saying that I thought kids with EE shouldn’t need play dough cakes, I tapped the anguish these parents juggle daily as they navigate life with little to no real food for their kids. The play-dough cake is the best they can do at birthday time, and the kids are grateful for it. Who am I to question, or suggest I might know something that the expert teams they consult did not? If they’ve seen the highest experts in the land and their children still have no prognosis of ever eating food, who am I to wonder aloud that this is wrong?

I do wonder. I wonder if the children of these parents could heal too, enough to tolerate some foods again, as I have seen children in my practice do. Or if the very idea of healing beyond what their doctors thought might be possible simply triggers too much shock, rage, guilt, and fear to be believed for some parents. But the scrutiny I raise here is meant for our pediatric health care paradigm, not families. Why do parents feel scrutinized, when the health officials and providers who should be guiding us have no particular answers for why this is happening?

I wonder how children in our country became so sick so often that we have websites devoted to providing fake cakes for them.

I wonder how food allergies became so common and so lethal, that bringing a peanut butter sandwich to school can threaten the life of a classmate.

I wonder how many more moms there are (I’ve met two) who have lost an infant to SIDS, and are raising a child with autism. I wonder how much anguish a parent can take, before simply dying of a broken heart, or exhaustion, from caring for a high needs, chronically ill child. I wonder how SIDS became the third leading cause of death for US infants, and why it’s safer for infants to be born in 45 other countries than it is here. US infants are more likely to die by their first birthday (foam cake and all) than infants in 45 other countries. Our world ranking for infant mortality has been in an embarrassing free fall for decades. Why?

I wonder why 1% of our pediatric population now has autism, a hundred-fold increase since 1980 now affecting hundreds of thousands of children, and why the CDC keeps using euphemisms like “mystery” instead of honest phrasing like “public health crisis” to describe it.

I wonder why children with EE are assessed and treated by the gastroenterology community, while children with autism and EE are frequently sent home with bandaid medications and no diagnostics, even though their presentations for symptoms and history are often similar.

I wonder how pediatricians reconcile that children today are more chronically ill and disabled than ever in US history, despite using more pediatricians’ tools than ever before: Prescription medications, and vaccines.  Children born today are more likely to live shorter lives than their parents, a reversal of trends of the last century.

I wonder when pediatricians began teaching parents to be more afraid of chickenpox, flu, or measles, than autism, EE, or epilepsy. And why?

I wonder why the pediatric burden for diabetes and Crohn’s disease – diseases that historically afflicted adults more often - has escalated so dramatically in recent decades.  Children now frequently get what were thought of as adult chronic diseases before 1980. Why?

I wonder about the immune system’s interplay with these conditions, and about recent findings that show how dependent humans are on the biome in their guts – that is, all the microbes we host, and how they work for us by digesting food, fighting pathogens, or running interference on inflammatory triggers.  If establishing a healthy gut biome is as critical for normal growth, development, and immune function as this work is indicating, I wonder what we have set in motion, by giving vaccines and antibiotics to infants so early, so aggressively, so wantonly - all tools that can disrupt that gut biome. Are these chronic conditions describing a worst-case, end-result scenario of this delicate switchboard – a newborn’s intestine – gone awry with unintended encoding? Does restoring that biome afford a child some recovery? A recent piece in Discover Magazine implies this might a hopeful path, as it examines research on just how important a new baby’s gut microflora is to brain development, while other research shows how crucial this is for avoiding asthma and inflammatory conditions.

Judy Converse is the founder of Nutrition Care for Children.  She has been a registered dietitian since 1989, and licensed with the Board of Dietitians and Nutritionists in Massachusetts since 2000. She has a master's degree in public health nutrition from the University of Hawaii, and a bachelor's degree in food science and human nutrition from the University of Vermont. Prior to setting up her practice, Judy worked as a nutrition educator for Hawaii Medical Service Association, and as an outpatient dietitian for Kaiser Permanente. She has authored two books with a third due in fall 2010 (Perigee Press). She published the first accredited learning module on autism and nutrition, testified before state and federal legislators for safer vaccines, and lectures to both parent and professional audiences on nutrition/special diets for autism, child nutrition, food allergies, and nutrition care process for autism. Originally from New England, she lives in Colorado with her husband and son.

Lee Silsby logo 09 The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.



Judy - can you please do a blog post about NAET acupuncture and EoE/Autism? I keep seeing things online where people are having success easing symptoms with this, but not sure how it fully works.

Shannon Brunson

Thank you. My son who was diagnosed with Autism at age 2 has just recently been diagnosed with EoE at age 6. His only symptoms being failure to thrive and getting very sick when he caught a gastro bug - 3 days in the hospital on IV fluids. After that we began to ask questions. Parents - just because the doctors think that Autism is just a psychiatric condition. We know that these kids have medical problems and we have to stand firm and make them do the tests and figure out why Johnny's tummy hurts all the time even though we have put him on a GFCFSF diet!!!!

Andrea Connors

My 27 month old daughter has autism and my 18 month old son has EoE. I'm glad he was diagnosed when he was (@14.5 months) because he had many of the "early" symptoms of autism which have resolved since he has been on neocate formula. My son's experience prompted us to begin biomedical approaches to our daughter's autism and we are already seeing results. It is so frustrating that physicians are not acknowleding that AUTISM SPECTRUM DISORDERS ARE CLEARLY RELATED TO ALLERGENS. This includes foods, environmental allergens and YES...VACCINES!!!!


"It seems to me that Ms. Converse is not knocking using fake cakes on birthdays. She very clearly said:

"For kids with EE who simply can’t eat food, a prop cake is a meaningful and important symbol. A small niche has grown to serve these kids inedible cakes made of playdough or foam. These cakes are vehicles for candles, wishes, hopes, and dreams – but not ice cream, forks, or spoons."

That seems very supportive of fake cakes. What she questions is medical experts who say this is the way it has to be for your child forever. She suggests there may be a way for these kids to tolerate food.

Why the lynch mob? I don't get it."

Most people are upset with a blog entry that Judy wrote, ( where she stated, "The ridiculous part: A play dough birthday cake? Is that for the child’s benefit? Or is it a prop to absolve the parents’ anguish and guilt? Maybe this is the tragic part. Imagine what the child was thinking."

There are many parents who work extra hard to come up with creative ways to keep their children from feeling left out when they're unable to eat regular foods while they're on an elemental diet or are NPO. The majority of these children are thrilled with their cakes and don't feel like they're being deprived. The initial article was more offensive to the EOS community than the one that was just published here on this site. A lot of parents were hoping for an apology from Judy and this 2nd article is the closest they got.

Hope that helps give you a little more understanding about why everyone seems to be "up in arms."

Alexander Cornswalled

Gee, you think having toxins injected into their blood could possibly have ANYTHING to do with medical complications alter in life?


that's as likely as smoking a pack of cigarettes a day for 40 years giving you cancer.


Debbie - I also believe that breastfeeding can make so much of a positive impact on many children's lives, and for a long time felt guilty that I only did it for 4 months. But recently I read that mercury can be passed through breast milk. I'm too busy right now to explore it, but if it is true, it makes me wonder what my amalgams might have done to my baby's immune system and digestive system. I also wonder, if mercury migrates quickly to tissues and we have less glutathione as we age, is the baby getting an adult's lifetime worth of mercury dosing every time they breast feed. If so, how long does it take before they start showing the effects of it and how does it manifest. Breastmilk is perfect, but maybe only for some. Could be poison for others. This is not to say that store bought formula is a better option. I wish I had homemade my formula, looking back on things, and the broken down proteins formula you talk about sounds like it should be a go to option for many many children.


From what I've been reading, it sounds like my children are very fortunate to be working with their particular team of doctors. I'm saddened to think that our experience isn't the norm.

My son has EoE but he does not have autism. He didn't tolerate foods as a baby and ended up nursing almost exclusively until 20 months. Those 20 months were filled with sleepless nights, pain, discomfort, constipation, diarrhea, vomiting, reflux, etc. If I knew then what I know now, I would have happily weaned him onto an elemental formula somewhere after his first birthday. That would have saved him several years worth of malnutrition and pain.

He was medically complex enough that we didn't get the diagnosis for EoE until after he turned 3 and after he'd been labeled as FTT for nearly a year. After being on an elemental diet (Neocate Jr) he finally had his first clean scope (no eosinophils). As we continued on the elemental diet we started seeing subtle changes in him. He began meeting developmental milestones, his skin took on a healthy, rosy hue, he was finally making eye contact with us, and was no longer sick all of the time... His health was fragile enough that we continued with the elemental diet for nearly 3 years before he was cleared to do food trials. Now he's got a pretty decent list of safe foods and is able to eat a little birthday cake. The funny thing is that food no longer defines our holidays or celebrations, and both kids know that there's more to life than cake. BTW, EoE doesn't just disappear. It goes into remission and can be triggered by things such as environmental allergies as well as medications, making my job as a parent that much more difficult.

Please don't assume that the only reason kids don't heal as quickly as we'd like is that the parents are stupid or ignorant, or that the treating physician is incompetent. My child has adapted to his diagnosis and doesn't feel like he's missing out on life. However, we also make sure that his diagnosis doesn't define who he is or what he'll become. It can be a difficult balance to achieve, allowing your child to be a kid while caring for all of the medical issues, but it is possible and very necessary.

I wish this issue had been addressed with a little more compassion by the author. Being made to feel responsible for the pain that my child has faced can be heart breaking... Knowing that my child is thriving today because of the care that he's received from his family and physicians makes it all worthwhile.

The focus shouldn't be on what our kids can or can't have, or on the fact that we're such "bad" parents for making a fake cake for our children instead of pushing them to eat real cake (of all things!). It should be on figuring out why the prevalence of issues such as EoE and autism is higher than it has been in the past. What can we do to make this a healthier world for our children?



21 months of BFing didn't help my son. He was a nursing machine. He nursed every hour to hour & 1/2 for the first year, and after that he went to about 2 hrs. He was reacting from the moment he was born (likely even in utero based upon the activity and other things), because of what I was ingesting, which was healthy food (organic, etc). The kids react to what we eat when they are BFing. If you don't know a child has food allergies (in this case, EoE can only be diagnosed by endoscopy with multiple biopsies), or if you do an elimination diet and it doesn't help, that may be because the child is reacting to more than what you have eliminated. There was no way for me to know all of the things that my son was reacting to (more than the top 8).

I completely understand your thought process, and I am totally pro-breastfeeding for anyone who can. However, in this case, the formula that our kids are receiving is NOT junk food. It is NOT your run-of-the-mill formula (they'll have reactions to the other ones). It is elemental - amino acid-based, with no intact food proteins for the body to react to. The kids get 100% of the nutrition they need while they heal. IN most cases, the kids thrive on the formula because they're finally getting the nutrition they need and aren't throwing up or having diarrhea as they do when they are reacting. The difference in the children can be nothing short of miraculous. They gain weight and grow to catch up to where their bodies would have been if they had been getting the proper nutrition all along.

Knowing what I know now, I wish I would have known his diagnosis earlier so I could have stopped nursing and given him the formula to stop the pain he went through for the first 6 1/2 yrs of his life. I often wonder how much different things would have been for him if he had gotten the proper treatment as an infant. I know he would have been healthier, he wouldn't have had years of chronic ear infections, the mysterious fevers, chronic leg pain and cough-variant asthma attacks (even while BFing). I do wonder, though, would he have Asperger's (if it is somehow related to the autoimmine issues or to the malnutrition due to the chronic vomiting)? Or would he just have some of the traits? I don't doubt he'd be as intelligent as he is now.

He was 6 1/2 when he got the NG tube and 7 when he got his G tube. He is almost 13 now, and doing great. We are almost finished with food trials and he will be able to avoid his problem foods and eat a healthy diet for the rest of his life (if he so chooses as an adult).

My point is that BF is not the answer for these kids. If you are lucky enough to know the diagnosis early enough and can eliminate the common allergens while continuing to nurse and that's sufficient to clear the baby of eosinophils, then that's WONDERFUL and I'm all for it. For the majority, that would probably work (if they would know about the diagnosis in time, which isn't common as it isn't that common to scope a baby). If the even Dr knows enough about EoE to suggest that course of treatment, that's amazing and the parents/child are very lucky, and if the mother is willing to do that, that's phenomenal! For most, they're going to hear things like "It's colic. Use a football hold." or "It could be reflux. Raise the head of the crib." or "Babies spit up. He/she will grow out of it" or "It's a gag reflex. He/she will grow out of it." before they realize they aren't growing out of it and get the tests needed to diagnose it. Sometimes, like with my son and so many others, they will also claim "It's behavioral. He/she has you wrapped around his/her little finger." That was when I finally knew for sure my child's Dr was way off base.

lynn reed

I wish we would take this conversation back to where it naturally needs to go and discuss BREASTFEEDING. Formula is #1 junk food...end of discussion


This article has no actual data or information that proves the point that children with EE or autism can heal given Judy's recommended regiment. So what is the point of wondering aloud? As a mom of three children with EE who has it as well, I am tired of hearing theory from people who have no substantiated evidence. We are angry because of the audacity for someone to criticize some of the only things we have done that have brought about actual results. My children are thriving because of the time they were no foods and slow food trials. They are no longer in pain which is such a miracle to me and it is all because of the medical community who does continue to research and strive for answers. Thank you Cincinnati Childrens!!


won't post anything that does not agreeing with you in some fashion our calls out the lack of applied science, wow brave...


Michelle Gillespie wrote:

"The focus here should NOT be about "fake" cakes but the prevalence of autism and EE. Children's Hospital of Philadelphia is doing studies on autism and EE because of the prevalence among this population. "

How interesting that the Children's Hospital of Philadelphia - Paul Offit's hospital - is looking at gastrointestinal disorders in children with autism.

"I disagree with Judy's statement, "Children with autism and EE are frequently sent home with band aid medications and no diagnostics." "

I don't know very much about EE but Judy is correct, historically children with symptoms of autism have been sent home with nothing but a psychiatric label and a prescription for psychotropic drugs regardless of symptoms of eosinophilic disorders: nausea, vomiting, diarrhea, abdominal pain, reflux, dysphagia, anorexia, bloating, difficulty sleeping - with perhaps all of these being attributed directly or indirectly to their psychiatric diagnosis. Until recently, eating, toileting and sleeping problems have been considered behavioral symptoms of autism.

I'm glad that the gastroenterologists are stepping on board the autism ship, to use Jenny's analogy, but at what cost to Dr Wakefield who was the very first to point out that children with autism have gut inflammation, and that their autistic symptoms improved when treated with diet.

Julie Leonardo

Oh and by the way, I know Judy. She helped my daughter in her start on the biomed train, and I appreciate her help. She is compassionate, and I think you are all missing the point. She is not against the kids having cake per se. I think she is just trying to talk about what the hell is happening that we have all of these kids who need to have fake cakes for their birthday?! She is worried about the kids, and she wants them healed from the inside out and also wants this stopped. She used the cake as a jumping point to get to the issue which is why are our kids so sick. That's all she's saying from what I can see.

Julie Leonardo

I definitely believe that a lot of our autoimmune problems, even the "genetic" ones are originally caused by environmental triggers. We have been bombarded in the last hundred plus years with environmental toxins, starting with factories and machines using fuel, to vaccines, pesticides, and other agents. Our genes are getting mutated, hence the genetic component involved in our many disorders. We pass those on, and without a clean environment, we are set up to be triggered by a number of things. My sisters and I are all ADD, my eldest daughter has Down Syndrome and Autism, and my youngest is over two years old with extremely low tone and just starting to walk on her own. She probably has a metabolic or medical disorder causing this per her therapists. Is it genetic? In a sense, yes. However we are being triggered by our environment.


Quite frankly, what's your point?

You don't know that virtually every parent of every kid with autism/EE thinks the same things that you articulated with the exception of how stupid/pathetic it is to give your kid a pretend birthday cake? No shit, Sherlock Holmes. We've got the entire medical profession covering their asses and telling us that it's our lousy genetics that are responsible for an epidemic of diseases that were next to unknown thirty years ago.

I've got a kid with EE and a kid who had PDD-NOS and is recovering. Do I think that's a coincidence? I do not. The coincidence isn't genetic, either.

If parents are accepting giving their kid with EE a non-food birthday cake it's because they've figured out the chances of their child seeing a real remission or cure for his/her EE is about the same as finding a snowball in hell. That is all kids with EE, not just those with EE and autism.

Please, tell us all about how many kids you've CURED with dietary restrictions, giving specific examples with identities redacted, of course. I've met hundreds of parents now of children with EE and to date, I've seen a grand total of two children who now can eat like "normal people," a fact their parents attribute to the child being diagnosed extremely young that they were living on elecare or neocate from a bottle AND they were on steroids (budesonide with sucralose) for a long enough time that they got to push the reset button, apparently. The rest of us haven't gotten that lucky.

NT kids with EE are not getting comprehensive treatment. We had to go through six and half years of hell and two GIs to even get a diagnosis, got inadequate treatment and we are on GI #3. I'm dubious that we will ever see real improvement thanks to mainstream medicine and I'm willing to look outside the box now. Because nobody should have to suffer what our kids go through on a daily basis.


There is a lot of anger in the community from people whose kids have this disorder, and while I agree that the point of view in this article is not totally clear, this is not useful. I have empathy for anyone who needs to limit their child's diet but to not have any food must be so hard on your life.

I think what the author is really trying to say is why? Why are kids suffering with this new uncharted disease, and where are the alarm bells? I fully agree with that sentiment. My heart goes out to the families affected by EE who are forced to make a fake cake to celebrate an important holiday, a child's birthday. I will be a bit more humble when I make a gfcf birthday cake and feel sorry for myself.

Jeff C.

Lot's of folks seem on be on a hair-trigger just itching to be offended. Unless I completely misread the article, the criticism was that fake cakes are considered "normal", not that some parents give their kids fake cakes to make them happy. My son doesn't have EE, but he is on a restrictive diet and an elemental formula. Frankly, the cake my wife made for him tasted terrible, but we all pretended it tasted good, and had a nice time. It made my son happy. Call this what you will, but you can't call it normal.

The point was that we have a generation of sick kids, entire industries that sprung up to cater to sick kids, doctors that seem to consider this routine and explain it away, no sense of urgency to find a cause, and no consideration of the fact that virtually none of this was needed forty years ago. Plenty of people that are making a buck off of our sick kids are happy to consider this normal. Judy dares to point out this isn't normal and she's the bad guy?

Parents of special needs kids should quit sniping at each other and save our energy for the real bad guys, those that try to explain away what our kids must endure.


My seventeen year old daughter told me recently that when she gets married (in the future) she wants a beautifully decorated FAKE CAKE. She said then it will look beautiful and she will get a piece of cake that she can eat and everyone else will get the cake they are used to. She has multiple food allergies (gluten, dairy, soy and various others). You all know the drill.
It took me years to realize her allergies because I was busy caring for her brother diagnosed with autism. Stop fighting with each other on this. Mothers need to support each other. I think thats what the article tried to say. Cakes are tradition and we need a way to feel part of the tradition.

Managing Editor

Hi, Michelle - I previewed this post and did not deem it a cheap shot at other parents - although I respect your opinion. It brings up the subject of the various levels of "new normal" parents face, some well outside of the autism community, but there's overlap as many of our kids have eating issues. Thanks.


Michelle Gillespie

It's disturbing that the Age of Autism would even publish such an article. As the parent of vaccine injured children and a long time follower/supporter of Dan Olmsted, Mark Blaxill and Kim Stagliano, I am very disappointed.

Obviously, you don't have much to publish anymore. I don't make "fake" cakes however I do not make fun or insult the many others that do. I have nothing but respect for my network of EE parents and ALL that we go through to protect our children.

Why would you even print this? What were you thinking? Put yourselves in our shoes. Yes, my son has autism and EE. I don't understand your reasoning for such a poorly written article.

Michelle Gillespie

I am a bit baffled as to why Judy Converse would take cheap shots at parents wanting their children to have birthday cake whether it be "fake" or real.

As the parent of 3 children on the autism spectrum and one child with an EE diagnosis, I am a bit confused.

My 6 1/2 year old twins with autism have had multiple food and environmental allergies and sensitivities since birth. They have NEVER had cake. In fact, their diet has ALWAYS been limited. Yes, there were people, family members, that criticized me for not making one however that was my and is my choice as their parent/caregiver.

Until Steven's diagnosis of EE in December 2009, I never gave a birthday cake much thought. The twins have never had a birthday party as they were always sick around that time of year.

Through my new network of EE moms, I have found them to be very creative in making "FAKE" cakes. It's just a different way of dealing with a very complex disease. Everyone wants their child to feel good about who they are regardless of any diagnosis. How do you explain to a 2, 3, 4, 5, 6 year old child about such a complex disease? Cake or no cake, who really cares?

Honestly, the world revolves around food. Our bodies obviously need food for energy. How one chooses to handle their child's differences has nothing to do with anything. Food allergies are on the rise. The general population needs to show more support for individuals with life threatening food allergies.

The focus here should NOT be about "fake" cakes but the prevalence of autism and EE. Children's Hospital of Philadelphia is doing studies on autism and EE because of the prevalence among this population. Maybe that is something that one of you might want to look into. Unless you are dealing with a doctor who is very familiar with this disease, your child could easily be misdiagnosed with GERD:(

Judy Converse did indeed miss her mark on this one. Birthday cake is more of a tradition then anything. It's no different then what meat/poultry we serve on Christmas, Thanksgiving or Easter. Ham was always a Christmas tradition in our house growing up just like turkey was for Thanksgiving but their are MANY people that cook different meals for those holidays. Does that make them wrong? Do we consult with the "experts"as to what to cook on those holidays? Surely not.

Judy Converse surely lacks empathy for these children affected by such a complicated disease including my own.

I disagree with Judy's statement, "Children with autism and EE are frequently sent home with band aid medications and no diagnostics." Yes, I did have to go through 3 teams of doctors/professionals to find the right TEAM for my son however I did it. Stevie has an excellent TEAM of specialist and they see him for who he is; a beautiful, loving and happy child that has an autism/EE diagnosis. They treat his EE symptoms and have come up with an allergy action plan to meet his needs.


Wow. I'm going to have to check out more of your writing because only those who speak the truth get the shills all riled up.


@Missie: You wrote, "Just like her you lack of true understanding for the Eosinophilic Community.
I despise those who offer such opinions and lack the actual first hand experience. This disease that has no cure and not a very long history is an everyday trial & error for us all."

Like Debbie, I think you were referring to me with this comment and it's true, I do not claim to have in depth knowledge of these disorders.

I will say though that I stand by my original skepticism that genes are completely to blame for the rise in this new disorder.

As you say, this disease has "not a very long history" Clue #1 and "every day is trial and error." Clue #2 to an environmental trigger.

That short history and lack of historical data and case studies from even your relatives when they were children having feeding tubes is a clue. Environment is involved. And there are a ton of things that could trigger GI issues from chemical additives in food to the genetically engineered foods themselves and myriad other reasonable toxic assaults to humans to investigate.

I don't think this is a conspiracy - the blame genes approach to new diseases on the scene. I think that Western medicical philosophy is so stuck in gene theory as causal to all these new diseases that it is a total disservice to those who are suffering. Like clockwork, researchers will waste time and money in the hunt for the exact genes.

So what happens when they find the genes? They have no way to stop them from expressing. So why blow millions of dollars on the chase? Time and money would be better spent uncovering the environmental triggers, eliminating them and finding real relief for the suffering kids of today.

I understand that others will have a difference of opinion. I realize that others are very comfortable with the genetics are to blame idea.

But think about it, if all those relatives didn't require feeding tubes AS CHILDREN but have GI issues today, that too indicates the possibility that environment in recent history has a role.

BTW to Debbie - thanks for your reply. Enjoy the healthy exchange of ideas and info.


Doctors are pointing to genetics as THE cause for both EE AND autism, citing the high family occurrence as "proof."

I'm sorry, but high family occurrence isn't proof of genetics. It's not even proof of genetic SUSCEPTIBILITY. It just indicates a likelihood.

Same thing with identical twins getting autism. Yes, they share the same genes. They also received the same vaccines, even from the same vials of vaccine. Again, genetic susceptibilty. Not genetics causing autism.

Something had to trigger that genetic susceptibility.

You can be genetically susceptible to celiac disease, but if you don't ever eat gluten, you won't ever get celiac disease, which is why it's totally unheard of in Asian countries, but among Asians living in the West and eating the typical Western (gluten-filled) diet (and getting the typical Western vaccines), the rate of celiac disease in Asians is nearly as high as that of those of European heritage AFTER ONLY 2 GENERATIONS.

What if EE is triggered by vaccines and diet?

What if EE could be prevented by avoiding gluten and casein from birth on?

What if EE becomes less curable the longer one is on gluten and casein, or the more vaccines that are given, or the longer one is exposed to various environmental toxins?


The more I read this column, the more the correlations pile up. Here appears to be another tragic diagnosis that had reared it's ugly head in very recent history. I'll be the first to admit I don't know anything about it, but I do recall a friend of the family having a baby boy who could only take food in liquid form in a tube, even throughout toddler years. I remember seeing him as a baby - his head was huge and he still could not even sit up, though he should have been able to. He'd be in middle school now. His Dad? A Gulf War veteran, probably highly vaccinated and exposed to only God knows what kinds of chemicals.

I think that when nutrition specialists find ways to help with all the myriad health problems of both our children and us parents, it's probably natural to want to spread that help to as many as possible, and on the way accidently extrapolate that information to new situations. I think that this could be the case, here. EOS sounds even more complicated than then a gastro situation that could be cured through GF/CF special diets, probiotics, and digestive enzymes. It could also help explain why a certain percentage of ASD kids, or any kids, don't reap the full benefits of GF/CF.

Let's try not to throw the baby out with the bath water. Judy may have missed the mark on this, but nobody here is perfect. And instead of practicing divisiveness, everyone benefits from the shared knowledge that has occurred and been revealed here. Judy may or may not ever issue an apology, but I'm not going to waste my valuable time over it. What I will do is start investigating the EOS problem and learning the differences in the needs of those kids vs the needs of the types of problems Judy is familiar with. They may very well overlap in ways we are not currently aware of, and both sets of children may eventually benefit from the shared knowledge. Every single day I am learning something new that either I can use today, or I file it away for future reference. My guess is that Judy will end up doing the same. I doubt that she is of the Bill Gates ilk. And she'll end up better off for it, and so will the kids. And once again, it's nothing but tragic necessity. But with everyone cooperating and sharing information, maybe preventing future children from having to suffer through it will be the end result.

I picture a giant ship, with more and more people gathered on it until it balloons past capacity, spilling it's people onto another one and another one, until there are millions of people in them, the auto-immune fleet, it as they find they have more and more in common. Eventually the land is empty, devoid of life. In the fleet we have the autism ships and the allergy ships and the asthma ships and the ADD/ADHA ships, and diabetes ships and the MS ships, the Alzheimers ships, the Parkinsons ships, and now, the EOS ship has been christened and sails on to join the others. They all run on the same fuel. Divide the fleet and the boats will be sunk, the problem pushed to the bottom and forgotten, yesterdays headlines. Keep the fleet together, add to it when necessary, strength in numbers. The other choice? Be be divided and conquered.

When we are finally able to join together all these various vectors of the same underlying issues, and see the similarities and not just the differences, loosely associated under one huge non-profit umbrella that puts Autism Speaks to shame, then the children will reap the reward. Until then, we will be divided and conquered, each small but growing population struggling on it's own to practically no avail. Hopefully we will accomplish this sooner rather than later.


I feel like this author is getting attacked when she is really on our side. She is asking most important questions.

And I'm a mother of a son who cannot have Playdoh b/c of the food colors and gluten!

The mainstream medical establishment doesn't know how to *heal* anyone. Our children's bodies are not suffering from a lack of chemical medication or fake food... there are real sacred cows in our society which need to be confronted to discover the truth of what we are doing to ourselves.

We are not eating the diet humans are meant to eat

Mito disorders have root in hypothyroidism:

Gene expression is controlled by environment and diet, see the science of epigenetics. Genes only cannot be responsible for an epidemic, they do not change that rapidly.

just wondering

It seems to me that Ms. Converse is not knocking using fake cakes on birthdays. She very clearly said:

"For kids with EE who simply can’t eat food, a prop cake is a meaningful and important symbol. A small niche has grown to serve these kids inedible cakes made of playdough or foam. These cakes are vehicles for candles, wishes, hopes, and dreams – but not ice cream, forks, or spoons."

That seems very supportive of fake cakes. What she questions is medical experts who say this is the way it has to be for your child forever. She suggests there may be a way for these kids to tolerate food.

Why the lynch mob? I don't get it.













kim spencer

Last year I spoke at a Pediatric Nurses meeting on the topic of autism. the speaker before me (pediatric GI nurse) spoke on EE. She grabbed a power point online, admittedly. In the middle of the presentation she said, "95% of EE can be cured by diet" and then she asked us in the audience if anyone had tried to change their child's diet. I raised my hand, my child has been on a restricted diet for years. She said, it's hard to be on a diet...right!? and I said, yes...with a BUT...but she went on without my explanation to say that it is hard to eliminate foods, so they suggest prilosec instead....because it's so hard to quit foods. the power point was provided by the makers of....prilosoc. OMG

Amanda Blinn

To Debbie: My son has extreme food allergies, is on an extremely limited rotation diet, we carry an epi-pen, and he likes what some people call fake food. We are very thankful for it. He also has what's known as "food phobias" as many times food has made him dangerously ill. We have two friends who get their nutrition via stomach tube and yet both sit and "eat" with us for companionabilty (one person is elderly and the other is a young classmate of our son.) I love that they are willing to do so. I wish people were not so judgemental. I also want to suggest an idea to you...I have MS and am treating it via diet, and by probiotics. I have found through trial and error, in my own case and in that of my son, who has a dx of autism besides the food issues, that autoimmune disorders can be issues of microflora. I'm glad I've pursued that line of research and I hope you don't mind me mentioning it. I wish you and your family well!


"So why the mom-rage? Because the last thing a parent wants is to be judged or criticized."
You answered your own question Mrs Converse!!! It goes way beyond that have no right judging how those who live with this daily choose to celebrate their child's birthday and THAT is exactly what you did. If it was truly the pediatric health care you were judging you should have addressed your post at the health professionals!
Do you even realize the pain and heart ache these families live with? My son was diagnosed in July with EoE and he has Autism. EOS is different for every individual, you can say it is a "spectrum" like Autism.
Mrs Converse, attend the conferences that the EOS families have urged. Then you will truly understand our outrage at your post and continued remarks.


Beth- Genetic research is wellfounded and supported for EGIDS, not just because the researchers are able to identify the genes connected with the disorder, but also because of the famillial connections so often seen. While I am the only one in my family with EGID, all 3 of my siblings have GERD, my parents have GI issues, and many grandparents and other relatives showed sympotms of EGID, including dietary intolerances and dysphagia. Its also a very important area of research. We as a community are just beginning to understand how this disorder presents, but genetic research could, someday, help us understand why it happens. Its true that more research needs to be put into treatments as well, but until we understand why this happens, theres no way we can come up with a real cure. Genetic evaluation can also assist in learning more about the different variations in how the disease presents, i.e. allergic vs non-allergic. While treatment is an important area to advance, all of our goals is to find a cure.

As for the article itself, I believe Ms. Converse brings up some very good and interesting questions regarding chronic illnesses in todays children, but her overall tonality and statements directed at the Eos Community are exceptionally rude and disrespectful. Because of the lack of knowledge of EGIDs in the general medical community, many parents of EGID children, as well as older kids and teens with the disorder themselves, are very well read on the workings and recent research of the disorder. To treat us as though we cannot possibly know what we are talking about is callous and ignorant. The worst part of the whole situation is that, to our knowledge, Ms. Converse has not made any efforts to find out more about this disorder. This lack of knowledge and refusal to admit a lack thereof and a subsequent attempt to learn more is exactly what endangers the people with this disorder. Personally, I was not diagnosed until I was 12, before then my mom was told over and over that it was all in her head, that I was just a fussy baby, that it was just reflux... When I got out of my scope that got my diagnosis, the doctors were very concerned that I had esophageal cancer because it was so destroyed at that point. This is a serious risk for people who go untreated for long periods of time, its not just about discomfort. It is essential that we use the treatments that have been found to work, instead of putting all our trust in alternative medicine that often does little to help.
Its not 'mom-rage' or teen-rage thats driving us to respond like this, its concern for our children and ourselves, as we have to fend for ourselves in a medical community that often either ignores, mistreats, or lacks understanding of EGIDs. When were lucky, we find doctors that research, talk to us, and try their best to treat us, and even listen to our perspectives on treatment. I have been lucky enough to start seeing Dr. Furuta in Denver, who truly respects his patients and discusses treatment with them thuroughly. Its doctors like these that give us hope even when we enter the 'grey areas' of the disorder, as I have.


Missie, I am not sure if you mistook me for "Beth" (to whom I responded) or misread my comments, but I was saying that there absolutely is a genetic link. As I mentioned, this has been confirmed via the Human Genome Project, but it's also something we in the community knew since we've seen it and, for years, we've spoken about our own experiences within our supportive community. We now also know, however, that mitochondrial disorders can be the underlying cause in some people.

I'm really sorry to hear that your daughter had to go on TPN. I know a few other people who have, but they usually have more than "just" EoE, as your daughter does. The severity of your daughter's eosinophilic disorder is much more severe than those who are solely dealing with Eosinophilic Esophagitis (EoE). She is going through a lot. I know kids and adults who needed TPN for the same reason. I recall one woman with EGID mentioning how she would go out to restaurants with her co-workers and order something so she wouldn't look out of place, but she would just move the food around on her plate and wouldn't eat any of it. She couldn't. Her body couldn't tolerate any food. She was one whose children ALL had eosinophilic disorders.

If somehow I did offend you, though, it was unintentional and I'm sorry.


Debbie, I am very glad that you posted; I think you have expressed many valid ideas.

I think Ms.Converse also expressed many valid ideas.

Isn't it possible that both your perspectives are valid????

I see both sides. I can't imagine that any child would be happy with a fake cake--my first reaction was utter horror that anyone would think so--but people are posting that their children are thrilled with them, and I'm sure they are completely honest about that. So my first reaction was obviously wrong.

But my child was also seen by top "experts" in too many specialties to remember--and NOT ONE thought to look at his diet. Or my diet. Or my other son's diet.

And diet made such a difference TO ALL OF OUR SEEMINGLY UNRELATED SYMPTOMS.

So, like Ms. Converse, I too am thoroughly disgusted with maybe the entire medical profession, for missing something so important--and so easy to fix. Maybe that's not fair of me, but that was my experience. Even the nutritionists I saw knew far less about gluten/casein than I did.

And I do wonder if things had gone longer before I discovered the dietary causes of our symptoms, if we would have seen feeding tubes and worse in our household.

Anyway, I wish both of you could see that you really are not so far apart in your thinking. You've just had such different experiences, it's as though you've lived in completely different worlds.

And it seems to me less important to fight over hurt feelings (though I do understand those, on both sides) than to remember that BOTH those worlds were caused by environmental factors.

Missie Ayers

I have read this article, which seemed to me to indicate the author as more concerned with getting in her "digs" than expanding her mind and getting a real impression of the Eosiniphilic community. That is ok though because she is not the only closed minded individual out there. To be honest as frustrating as her article is, the comment section was most disturbing.

I would like to share a little bit about my daughter who recently turned 17 and completely enjoyed her "fake cake". Just a little over a year ago is when her life changed for ever. She was diagnosed with an extremely rare disease called Autoimmune Autonomic Ganglionopathy. We were told that gastroperesis and dysmotility issues would be among the many misfunctions her body would face over her lifetime. We were blown away with the sudden weight loss just a short month later. We also did not expect what the scope showed a few weeks later. Eosinophilic disorder in her esophagus her stomach (to the point she had an ulcer) and even in her gall bladder. A failed attempt with a g-tube she needed TPN for several months along with steroids.

@Debbie: you mentioned that you doubted that the researchers who were able to determine that EE was genetic should not be trusted. You felt like it was not true. I am paraphrasing but your statements were very clear, and your opinion is unfounded and WRONG.
When the doctor came out from my daughters scope to reveal his finding he was extremely surprised to find ridges and furrows indicating (and later confirmed from biopsies) Eosinophilic disorder. What surprised us both was the fact that I already knew about this disease because my cousin has 2 children who SUFFER from this disease. After my daughter was diagnosed this same cousin was scoped and diagnosed under the suggestion of an EE specialist. A scope I had several years back also revealed Eosinophils in my biopsy. Our doctors view this link and believes it validates the genetic claim.
You may have your opinions just like the the woman who wrote the article. Just like her you lack of true understanding for the Eosinophilic Community.
I despise those who offer such opinions and lack the actual first hand experience. This disease that has no cure and not a very long history is an everyday trial & error for us all. We did not choose this. My 17 year old would rather be making prom plans and looking for her first job. She would love to meet her friends at the local burger joints and pizza parlor. One thing she says she does not seem as bothered about is the need for the "fake cake".
The condisending attitude of the writer however is something she says she could live her whole life without.
Since it seems to be a good thing to offer "opinions" on this forum... It is my opinion that the Judy's whole column should be discontinued due to her ignorance...
I can also state empatically that I am pleased that she is not a part of my childs health care team. I do feel for those who do have to deal with her.

Cindy Griffin

Sadly, much as we'd all love to see the medical world lead the way, I don't see it happening. There is much money in researching causes and cures that never come. But there is even more money in tying all of these sick children (from EE, Autism, allergies, asthma, food and chemical intolerances) to chronically be tied to drugs to offset their effects - for life. These kids aren't going to "just outgrow" these problems. The cynical researcher/clinician that I am says that the kids won't get better because of modern medicine because that is never going to be the aim of Big Pharma, nor Big Food. I have had a number of clients who fled high paying jobs as sales reps for Big Pharma and sought help from homeopathy, naturopathy, osteopathy, chiropractic, acupuncture, nutrition, etc., becaue they knew the truth and could no longer work and peddle the Big Pharma lies in good conscience. Three of them have told me (from three different Big Pharma companies, BTW) that in sales meetings, they were told "our goal is to have every man, woman and child on a minimum of 3 drugs FOR LIFE by 2015 to meet our sales goals." That tells me that there is good money in NOT finding cures - and enough evidence certainly exists that the damage from vaccines and many of their drugs is known about by these giant companies, and they will bury the truth - til we, our kids and grandkids are all buried under an avalanche of pills - or just simply BURIED, pushing up daisies.

Healthy nutrition and avoidance can help with the current problems. Alternative medicine approaches offer relief, and in some cases, full recovery from most food related illnesses, especially those such as homeopathy, acupuncture or naturopathy that aim at the underlying causations and conditions. But I would not place any bets on conventional medicine, nor food manufacturing to make us healthy. There's too much money in keeping us chronically sick, overweight, and constantly tied up just trying to survive.


Beth, yes we do. Do you know anyone who has gotten food impacted in their esophagus or had to have their esophagus stretched? Guess what! That's how a lot of adults and teens are being diagnosed. They suffered through childhood but didn't get diagnosed until they had food impactions and had to have the food removed in the hospital, had subsequent biopsies which confirmed the diagnosis (the ONLY way it can be diagnosed is via biopsies...multiple biopsies as it presents in patches). If you had EoE, would you want to get your esophagus stretched and chance an esophageal tear, or would you rather avoid the food(s) that you are allergic to, which are causing you to have the problem to begin with?

There are grandparents, parents, and children with EoE/EGID. In some families, the whole family has it - at least one parent and all of the kids. In others, there may be one child with it but there are often other immune issues in the rest. It varies from family to family. As I said, everyone is different. The family trees can be riddled with a variety of issues. Yes, genes are definitely involved! Again, it's a proven fact, not a fairy tale and not a conspiracy. I can look at my own family and it's very clear that the autoimmune issues stem from my side, and it's my mother's side, then her father's (my maternal grandfather’s side). That's as far down as I can personally see it. The Aspie traits seem to run on my husband's side, however I can't rule out some issues on my side as well. As a wise pediatrician once told me, if we all knew of the potential issues our particular combinations of genes could produce, humans would never procreate! Every time I hear parents who are afraid of having any more kids because they don't want to have another with EoE, I think of those words. These things have been around but we didn’t treat them and people suffered. Interestingly enough, I know of a couple of families in which grandparents were diagnosed only after their grandchild, and they finally had an answer for their lifetime of problems.

I am anticipating your next question, or someone’s, as I have heard this many times before: “What happened to everyone who had it in the past if they weren’t treated?” It is very possible that, along with people who weren’t treated for regular allergies, asthma, and so on in the past, people could have succumb to complications. Since EoE can cause frequent vomiting, EGID can cause diarrhea, they can suffer from early satiety, they may tend to get sick more often, have “mysterious” fevers (internal inflammation from the Eosinophilic infiltration), have co-morbid asthma, etc that is affected by eating the foods they are reacting to, and may also suffer from FTT, in past centuries it would have been very likely that kids might not have made it to adulthood.

Until last century, some of the most common causes of childhood death were dehydration from vomiting &/or diarrhea, as well as fever. Since genetics are involved, healthier siblings can still carry those same genes and have children with the same issues. Thankfully, today it’s easy to treat fevers and dehydration, asthma attacks, and it’s even likely that people with severe allergies will survive with the use of an epi-pen and proper medical treatment. It isn’t that it wasn’t around, because it was. We just know what it is now, and we know what’s causing it. Just because people didn’t know what cancer was long ago didn’t mean they didn’t get it. We can often treat that now, too. Diabetes, another autoimmune issue, is another example (some with EoE/EGID may have that, too, or have a family member with it).

As for not hearing of autism when you were younger, that doesn't mean it didn't exist; you just didn't know what it was or what it was called. You may have called people "retarded" or had kids with HFA who just didn't fit in or others who got into trouble a lot. Those with severe autism were locked away, so you didn't get to know them. That's the sad reality of it. I know I had someone in my elementary school with HFA, but we didn't know what it was at the time (in the 70's). He was teased and bullied, which was awful. I often wonder what happened to him, and am hoping he was able to function well enough to work in a computer field or the like.

I personally think it's wonderful that we know a lot more about it now and can help many people, who never had a chance in the past, to live relatively happy, productive lives. My son is so intelligent, but he would have had no chance for a good life if he had been born at least 5 decades earlier. He can't write, so people would have thought he was unintelligent. He would have had severe problems if even he was born in the same decade I was. Thankfully, because we know much more than we did, he is now going to have a chance to attend an amazing school that will tap into his talents and address his struggles. He now may have a very bright future ahead. I am very thankful.

michael framson

This is another good article with a healthy robust discussion. I appreciated Debbie's contribution to my enlightenment on this subject which I know so little. Didn't David Kirby in his recent article make a point on the rise in ASD between 1988 and 1992? Did EE also have any corresponding pattern? Thanks.


Unfortunately, today’s kids are the unconscionable targets of a pharma-based tyranny focused squarely on altering their little immune systems. Vaccines are the fundamental tool for this brutality, creating autoimmune disorders designed to reap trillions for the vaccine producing companies, who ALSO sell drugs designed to treat (… but never cure) them.

You don't have to be a genius to know that the exploding incidence of food allergies, autism and all manner of autoimmune disorders are REAL. And perhaps the only thing more tragic than the "improved diagnosis/awareness" rationale, is the number of people who actually believe that tripe. As the parent of two small children, in a town with far less far less than 5000 people, I can tell you that there isn’t a single classroom inside their school that doesn’t have multiple food allergies postings near the entrance. While my kids see me as “old”, my school experience (…excluding post secondary) ended mid way through the 80’s. My memory still works fine, and I know that asthma, arthritis, diabetes, autism, life threatening food allergies… all existed somewhere between rare and non-existent. And to suggest that they were there, and we all just failed to notice them is preposterous! I now understand that the difference between autism and what used to be called “mentally handicapped” is self evident, and that anaphylactic food reactions are kind of hard NOT to notice.

In 1980, children typically received 10 vaccines before their 6th birthday. By 2007, that number had ballooned to 36… 6 of which are mercury containing flu shots, and two which are MMR shots. A vaccine is defined as a biological preparation, DESIGNED to trigger an unnatural immune system response. An autoimmune disease is defined as a medical condition that arises as the result of an overactive immune system response, where the body produces an inappropriate immune response against its own tissues. An allergy is also defined as an abnormal immune system response, where the immune system mistakenly believes that a substance is harmful to the body.

In the last 30 or so years, we’ve seen an exploding rate of autoimmune diseases, and allergies (… to things that are known, but not always declared components of vaccines) which seems to be tracking in lockstep with an immunization schedule that has quadrupled.

Isn’t that an interesting coincidence?


fanofthefew wrote:
"It's called helicobacter pylori. It is an ulcer causing bacteria that is living in at least 50% of the worlds population, and it thrives in an acid based environment..."

While you did not say a high stomach acid content promotes helicobacter pylori someone could get the idea that taking acid blockers is a way to reduce it. Actually helicobacter pylori itself reduces stomach acid output and raising acid levels reduces the accommodation of helicobacter pylori. Some recommend reducing acid temporarily while taking antibiotics to treat it as to reduce symptoms, though just reducing acid levels would promote helicobacter pylori.


When I first read this I assumed you met that kids with EE can't eat cake. I had no idea that there are kids who can't EAT at all. WTH!! This is so wrong. Yet another disease that wasn't around when I was a kid.


I see the comments are moderated
So I am not sure
if anyone else will ever see this

My son loves his fake cake

He can not have real cake
He will never be able to have a real cake
Unless we find a cure for eos disorders

But like every other child he wants something to blow out on his birthday

And in my opinion you still owe the eos community an apology


Kim, Thanks for clarifying that. Considering how "incendiary" the articles themselves were, it looked like the photo was "fueling the fire" a bit more. :-) If you saw the photo of the playdoh ball she used on her original article, that was obviously meant to drive home a point, but was not what any parent is ever going to use for their child's birthday.

I forgot to add in my comment that I am aware that this is an autism site and wanted to mention that many in our community (not everyone, but a lot of us) also deal with ASDs. My son, for one, has Asperger's. We are NOT sent on our way with bandaid treatments and no diagnostics, as she has suggested. Those who have developmental issues need to be seen by someone other than the GI, allergist & nutritionist that treat the EoE/EGID, as they can't diagnose neuro-biological disorders. We need to see the developmental pediatricians, etc. to address those issues.

We also rule out bacterial and yeast overgrowth, h-pylori, etc. It's an autoimmune issue, not a microflora issue. This is all commonly checked out, not overlooked. We do look outside the box. Some have tried alt. treatments, and needlessly spend a lot of money out-of-pocket for promises and treatments that just don't work. Thankfully, the local alt medicine specialist (well-known and well-regarded) that I took my son to see knew his limitations and admitted he couldn't properly treat EoE (when my son finally got the diagnosis), but not before I had spent thousands prior to that diagnosis.

Some people choose steroid medications so their children can continue to eat what they want (sometimes this works and sometimes it doesn't) and while I did not choose this route for my son, I do not judge those who do. Some choose to eliminate the foods that are causing the reaction, which might be viewed as the more "holistic approach." For the vast majority of people, that only means eliminating some or all of the top allergens, which are also common triggers for EoE. If you can't pinpoint those foods via elimination diets (the various forms of allergy testing are completely useless for many people, with false + & false - results), then you remove all food, allow the gut to heal with the use of elemental formula. In my son's case, there was no possible way to figure out what he was allergic to. Some of those foods are not the norm.

When the esophagus is clear of eosinophils, you start food trials. For some, the process of finding foods is a lot faster than it is for others. The ones who are are on formula only are just that "formula only" and can't eat food, including cakes, no matter what they are made of. Hopefully that will only be temporarily, but the length of that temporary state can vary from person to person, as we are all different. The specialists recognize this and treat their patients as individuals, too, not as a collective disease. If she knew about the disease and treatment, she would know this as well.

We are not the "Fake Cake Community" as she so callously refers to us. We are the Eosinophilic Community, and her articles have insulted far too many of us.

I initially made the assumption that Mrs. Converse was just uninformed and had the best of intentions, but her subsequent words and actions made it clear that was not the case.

Thanks again for clarifying the photo. :-)


Debbie wrote: "unless she thinks we should feel guilty about our genetics (there is a proven genetic link - human genome - in eosinophilic esophagitis, although less frequently it can be the mitochondrial DNA)."

Just curious Debbie since the medical community has told parents like you there's a proven genetic link, if you and your peers indeed have grandparents, great aunts and great uncles, great grandparents who had such serious GI disorders?

My guess is they didn't, and it's not truly genetic - maybe epigenetic or environmental assaults could alter DNA but if you don't see it in your family tree you should question those who call it "genetic."

Just my opinion here but I'm guessing it's like autism. When I was a kid in the 70s, we didn't hear about other kids needing feeding tubes, and we didn't even know the word autism.

Today, I know of a handful of kids among friends and relatives families with gi issues requiring feeding tubes.

If you and your peers - other parents with kids with severe gi issues like EE - don't find these issues in your family tree beyond the current young generation, think about this deeply.

It's so tragic to see kids suffer and to have poor genes take the blame when the disorders are new on the scene in a family tree. The result is always the same. Researchers will squander millions of dollars on useless gene research for decades instead of discovering concrete treatments and prevention.

It's time for parents to steer their friends and families away from giving money to groups that will waste limited funds on unproductive studies.

The kids with EE deserve better lives NOW. It's so tragic to see those tubes and imagine the dietary challenges moms like you and my friends face.

Kim Stagliano

Hi Debbie. I chose the photo for the article not Judy. It was meant to imply GI pain only. Thanks for your comment. Kim Managing Editor


In January, Judy Converse wrote a blog entry that insulted the eosinophilic community. When people commented, letting her know how upset they were, she used that controversy to try to increase traffic to her blog and sell books instead of properly handling it. Initially, there were over 50 comments that made it through to her blog. That was with her moderating and editing for content (deleting parts of the comments that she didn't like which, in some cases, altered the gist of the comments). The vast majority of the comments were constructive, trying to educate her, explaining why what she said was insulting and so on. Some were from the kids themselves (3 teens that I know of, incl one who is also an American Diabetes Association National Youth Advocate). Only 19 of those comments remain, several of which now include positive comments from people who have not dealt with the same thing. Even the founder/president of Kids with Food Allergies and their Educational Chair reached out to her to try to explain and educate but she deleted those comments as well.

In addition, she was tweeting. Those tweets were also insulting, and seemed to be meant to drive traffic to her blog. There are a lot of very insulted, angry members of the eosinophilic community (those dealing with eosinophilic esophagitis and other eosinophilic gastrointestinal disorders). MANY, MANY people in our very tight-knit community feel very upset with her and the way she treated the entire issue.

The original blog article was and it included comments like:

"The ridiculous part: A play dough birthday cake? Is that for the child’s benefit? Or is it a prop to absolve the parents’ anguish and guilt? Maybe this is the tragic part. Imagine what the child was thinking."

Quite frankly, the children I know who can't eat are very happy that their parents love them so much and try to make their birthday special any way they possibly can. We aren't trying to absolve any anguish, and we have nothing to be guilty about, unless she thinks we should feel guilty about our genetics (there is a proven genetic link - human genome - in eosinophilic esophagitis, although less frequently it can be the mitochondrial DNA).

The follow up blog entry (the article that you've printed) was originally listed on her blog. It was entitled "Do Not Take This Cake". As you can see, she made sure it was closed to any comments. The flaming cake published on this site makes it all that much worse.

Some of her statements in the blog entries can be dangerous if a parent who is new to EoE/EGID reads it and decides not to listen to their child's specialists as a result of what she is saying. If she truly knew enough about EoE & EGID, she wouldn't make some of the statements that she did, and if she took the time to read and learn, she would have written a true apology when she realized that she was wrong. Instead, she wrote things like: "So why the mom-rage? Because the last thing a parent wants is to be judged or criticized." and "Who am I to question, or suggest I might know something that the expert teams they consult did not?" NO! SHE OBVIOUSLY DOES NOT, OR SHE WOULDN'T EVEN SUGGEST THIS!

There are MANY parents who tried very hard to help her understand that belittling the treatment that our kids are following vs trying to learn more about it, accepting that some people truly do need to be on elemental formula for more than 3 months to stay healthy, and accepting that some of the kids truly need to have "fake cakes", can't have "bone broth" and some of the other alternative treatments that were being suggested. However, she continued to use the controversy over the issue to draw attention to her blog and books instead of apologizing for her comments. It was very insulting and she showed all of us through her words and actions that she really didn't care. It seems to be all about book sales.

She finally did post a quasi-apology, but even that showed that she did not truly get it. She insinuated that our experts, some of the best in the country at CHOP, Cincinnati Children's, & Denver Children's, among others, weren't properly treating our children. Here is an excerpt from that apology: " my opinion, going more than a year with such restriction is not necessary, if your providers are doing a good job and helping your child’s gut /GI heal."

Each patient is different, and some need not only that much restriction but more. They are the minority, but they do exist. My son has had a g-tube w/ elemental formula for 6 yrs. During that time, we have also been doing food trials and he has gained many foods, but it was more than a year before we found anything that was safe. We are FINALLY reaching the end of my son's food trials and hope to be completed in 2012. Judy Converse stated that she believes that kids should not be on the formula for over a year and questions the ability of the specialists that are treating those who are, but she is not a physician and does not know enough about eosinophilic disorders to act like an expert. In my son's case, and in the case of several others I know, that was the ONLY treatment that worked and he has been healthy as a result. What Mrs Converse was proposing would have made him (and others) very sick.

She continued the tweets at the end of January that invited people to come read the blog and that she has a lot of angry parents commenting. She was questioning statements that it was just being diagnosed more frequently now but has existed. She questioned genetic links, although they are proven to exist thanks to the Human Genome Project. It was clearly all about generating controversy to sell books, but at the cost of alienating an insulting a very tightly knit community of people who are dealing with a common disorder.

Some of the deleted comments on her blog explained why her suggestions were not appropriate for everyone. If you could see the comments she deleted, you would see why her responses showed that she didn't "get it."

She also deleted comments from her Facebook page. Many of those comments were attempts to educate her, providing links to APFED, Kids with Food Allergies, FAAN, CHOP, Cincinnati, articles, etc. One article mentioned was even from Today's Dietitian: . Her response to mention of that article was that Today's Dietitian had written a positive review of one of her books. I am assuming from her response that she didn't bother reading the article so she could learn from it. She had written that Drs are not enlisting nutritionists in the care of kids with EoE, but that is not the case in many areas (CHOP, Cincinnati, Denver, Mt Sinai, and so on) and commenters were trying to explain that. Nutritionists are COMMONLY included in the treatment of EoE/EGID. It's usually treated by a team of GI, allergist and nutritionist. If she read the Today's Dietitian article, she would have seen that.

Another commenter suggested that, since she was so close, she could contact Dr Furuta at Denver Children's to learn more. He is one of the top Drs treating eosinophilic disorders.

The Chair of Education at Kids With Food Allergies, also wrote a very thoughtful, informative comment in response to the blog. She also posted it on the Facebook page when it didn't show up right away. Mrs. Converse did eventually approve the comment, but later deleted it, along with over 30 others. She provided a very helpful link

It is a slideshow from a presentation she gave at the 2010 APFED conference in Denver ( As you can see, the pictures of the actual cakes used to celebrate the birthdays of children who can't eat differ greatly from the ball of Playdoh that she shoved candles into, pictured on her blog. It's very obvious that no one is going to celebrate a child's birthday with something like that.

I'll tell one thing that is sure to cause "mom rage"! It's rude, insulting and incendiary comments like she has made. I recently saw that she is now an "expert" at Kirkman Labs. Many of us in the eosinophilic community use their supplements as they are safe for our children. I can only speak for myself, but I will NEVER buy anything else from Kirkman Labs as long as she is associated with their company and I have let them know that.


regarding the whole cake thing.... My kid,,, who is recovered from his severe developlemtal delays through diet and biomed (he was never labeled with "autism" although he may have if we had handed him over to the wrong people who don't look into medical issues) appreciates anything with candles. We've had candles in pineapple, candles in muffins, candles in nut cobblers, candles in vegan cheesecake. I don't quite understand the debate over the cake thing.

Anne McElroy Dachel

Thank you for this article Judy. I marvel over all these things constantly. Why are we so willing to accept all these sick kids everywhere? Why aren't officials holding press conferences on the state of the health of America's children? Why don't doctors work to cure kids and prevent these illnesses? The medical community views the chronically ill and disabled as a normal and an acceptable part of childhood. They merely manage symptoms and pretend that all these devastating conditions are a mystery.

You're right. You and I can remember a childhood where we didn't have a single classmate who had autism, life-threatening allergies, diabetes, or epilepsy. Today's generation won't be able to say that. What kind of a society is so willing to merely look on as we become a Third World Country healthwise?

And I'm sure the downward trend will continue and the rates of these childhood health problems will only get worse. At this rate, the healthy, symptom-free child will be the exception. Every student in the school could have some kind of sickness and the experts would still be scratching their heads.

Anne Dachel, Media


It's called helicobacter pylori. It is an ulcer causing bacteria that is living in at least 50% of the worlds population, and it thrives in an acid based environment which is caused by things like..... mercury poisoning. Doctors are trained not to test for it unless the child or adult is bleeding. It is now being linked to food alleries and other immune dysfunction ailments. Michael J Fox foundation is currently running studies on it since many people with parkinsons get some relief when treated for their helicobacter pylori infections. There are lots of false negatives during testing for H. pylori. It isn't always detected in your comp stool exams. It shouldn't be ruled out until at least 3 oe 4 negative tests approve a negative result. It is easily treated. If your kid is a food kid, demand the tests for it,,,, and other bacteria and parasites.


I know for me, implementing the GFCF+ diet (in a location where it seemed nearly impossible at first) felt like imposing significant deprivation on my daughter and myself. I still have worries that I may be reducing her nutritional intake diversity in some important but unknown way, but most of the other negative feelings now seem almost humorous, but they were pretty powerful at the time and not short-lived.

Now I tend to feel guilty buying the expensive "organic" foods that often I like better (some of which I can't be sure out here are truly organic), but with the hope that they are better in a significant way and that I'm not just swiping at the leaves of the toxic tree and doing little about getting at the roots, and sometimes I know I'm buying those items just to swipe at the "establishment" that "poisoned" my daughter--not a very good reason probably.

I often wish the "healthcare establishment" would lead the way in reducing the sources of potential harm in their practices (even if they are sure they are trivial) just to set the example and establish the "moral high ground" to "persuade" other industries to do the same, but because those exposures are probably not trivial, there is no dialog in the mainstream at least about cleaning up the environment for our children's health, except perhaps in some areas under parents' purview.

I really appreciate, Judy, that you are an exception to this, and I appreciate your efforts to help us nourish and heal our children.

Jeff C.

Jenna - I share your frustration with the medical community. They seem to fall into two camps; traditional doctors that want to do nothing and DAN/holistic doctors that want to throw every fad treatment at my kid at once. Neither side wants to do the hard work to figure out exactly what is wrong with our individual kids.

Regarding the tone, I read the article differently. I didn't think Judy was criticizing those trying to bring some normality into our kids lives (i.e. the fake cake). I took it as criticizing that fake cakes are now "normal" when no one needed a fake cake thirty years ago. The acceptance of the unacceptable (serious GI issues as routine part of childhood) is the issue.

Jeff C.

Concerned mom - did your kids ever get oral antibiotics? Bacterial overgrowth can cause the intestinal tight junctions to open and subsequent leaky gut.

Jeff C.

Thank you Judy, this can not be said often enough. “The new normal” is not normal.

Those of us with more than a few gray hairs know it didn’t used to be this way. We didn’t have kids in our classes hand-flapping to help them cope. There was no line-up at the nurse’s office for medication. Hell, we didn’t even have a nurse’s office. Everyone ate peanut-butter because it was cheap and nutritious, no one dropped dead. Teachers didn’t have Epipens. Febrile seizures weren’t routine. There was no special education coordinator, school psychologist, or behavioral therapist. There was no autism.

When my son was first diagnosed HFA, our pediatrician asked me about my drug history. I explained that I experimented with drugs in high school and college, but quit when I was 23. She stated that most-likely I suffered from the same problems as my son, and my drug use was my own crude attempt to self-medicate. I laughed in her face and we left. If smoking pot meant I had autism, three-quarters of my 1980 twelfth-grade class shared the condition.

Those of us that are older, and particularly those of us with recovered children, have an obligation to call bullshit on these people. We have an obligation to challenge doctors when they spout unsubstantiated nonsense. We have an obligation to confront anyone trying to dismiss the explosion of sick kids on better diagnosis. We have an obligation to gently question other parents that put their children on mind-altering drugs.

Many of the younger parents know nothing else and appear to lack any sense of critical thinking. It is up to those of us that remember that it didn’t used to be this way to stop the new normal.


Let me just say that I am glad my children never, ever saw a Pediatritian, only a regular GP.


Hi Judy-

I love your work, but I think the *tone* in your blog piece was a little off. People are doing the best that they can under awful circumstances, and now a crumbling economy to boot. They interpret your comments to mean they are not doing enough. It reminds me of the time I got a snarky call from my 10-states-away DAN wondering why I couldn't get a local pediatrician to prescribe a certain procedure (I had been to 6, and have a PhD and advocate for a living, so trust me I sure as hell tried). I also had a neurologist from clear across the country wonder why I couldn't get more local help in getting an expensive sedated MRI done with a very particular type of MRI machine (there is only 1 of these in my state and it is within the jurisdiction of essentially 1 academic practice which had an 18 month waiting list and probably wouldn't have written the script anyway). I offered to fly to the neurologist to get the testing done in his local area but he said that wouldn't work with my (very expensive PPO) insurance, he'd have to have my child admitted to a hospital, and now we're talking $45,000. Yada, yada, yada, I could go on--this is the crap we're all dealing with.

The FACT is that people in our community more often than not struggle mightily to find a "Judy Converse" (or more usually a whole team of Judy Converse-like professionals) that they can access and afford. Making people more aware of resources is one thing; making snide comments about them not having found these resources is quite another.

I also didn't mind the play-doh cake idea. I can whip up a GFCF cake just fine, but my son wanted the big Star Wars cake from the local grocery store like all the other kids seemed to be getting. So we served that at the party and he had a jazzed up giant GFCF giant cupcake for himself and he was happy as a clam. He also trades in all his Halloween candy for lego, and thinks he's lucky to be able to do so. Whatever works, you know?



concerned mom,

how did your kids present?

Theresa O

Sara, here are some citations on the shorter life expectancy for today's kids:

(blames obesity)

UK Independent:
("Obesity in children has tripled since 1980, because of lack of exercise and high-fat diets, and asthma has more than doubled in the past 10 years, with one in seven children now having respiratory problems. Doctors are also seeing an increase in the incidents of rickets, caused by a lack of vitamin D, and insufficient vitamin levels in children's diets is leading to poor health and development.")


Thank you, Judy. It's absolutely chilling but parent peers in this generation need a short, sharp shock to wake them up.

Or maybe they just need more sleep to untangle their neurons so they can think clearly and then at last really, truly wake up. But parents are being ground down by exhaustion in caring for catastrophically sick children on top of being presented with ramifications so enormous that it has the effect of knocking out their critical thinking skills. In the history of humanity, why do smaller bits of inconsistency mobilize and the bigger, more horrific lies narcotize?

Strange that. We could measure how bad things are by the fact that a nutritionist has to consider epistomology, social psychology, traumatic response and the history of mass denial of atrocity in order to simply do their job.


Riley was diagnosed with EE 3yrs ago. Gluten, casein (dairy of ANY kind), eggs are not on our list of foods we can even consider. Soy, corn, potato (reaction to ALL of these) cause severe gut pain, diarrhea and constipation. He is sensitive to beef, pork. We even tried duck eggs at one time because we were told the proteins were different. Guess what? They're not.

Concerned mom

My Unvaxed children have major food intolerances. There is something else going on here and we cannot keep blaming vaccines for EVERYTHING.

Teresa Conrick

This is such a true statement- "I wonder when pediatricians began teaching parents to be more afraid of chickenpox, flu, or measles, than autism, EE, or epilepsy. And why?"

It hits the nail on the head as to the spin and almost marketing tcqhnique that the AAP is using. It is a point that needs to be used often.

This was very well done. Thank you, Judy!


This is a subject AoA has not discussed much, but it has been linked to autism as well as several other modern plagues. The articles below discuss bacterial communities, and not just in the intestines. My gut feeling is that they are a critical element of chronic illness (ba boom tish!)

Children with autistic spectrum disorders (ASDs) tend to suffer from severe gastrointestinal problems. Such symptoms may be due to a disruption of the indigenous gut flora promoting the overgrowth of potentially pathogenic micro-organisms.

During protective immune responses, the adaptive arm of the immune system requires activation by signals provided by innate immunity and driven by microbial stimuli.

Type 1 diabetes (T1D) is a debilitating autoimmune disease that results from T-cell-mediated destruction of insulin-producing beta-cells. Its incidence has increased during the past several decades in developed countries, suggesting that changes in the environment (including the human microbial environment) may influence disease pathogenesis.

The worldwide obesity epidemic is stimulating efforts to identify host and environmental factors that affect energy balance. Comparisons of the distal gut microbiota of genetically obese mice and their lean littermates, as well as those of obese and lean human volunteers have revealed that obesity is associated with changes in the relative abundance of the two dominant bacterial divisions, the Bacteroidetes and the Firmicutes.

Asthma may have a surprising relationship with the composition of the species of bacteria that inhabit bronchial airways

John Stone

Just to mention that Judy's latest book 'Special Needs Kids Go Pharm Free' was published in December:

A Mom

I know 6 kids with EE diagnosis, and my 2 year old has flirted with an EGID diagnosis. I wonder a lot of the same things you wonder. I also wonder why a record number of kids are staying up all night with GERD (I haven't slept since giving birth).

As much as I don't like vaccines, I think by focusing on vaccines we are giving a pass to (1) the over toxicity of our general environment, (2) the fake dha/ara in infant formula and foods, (3) the frankenfood that is sold to our families every day (GMOs, chemicals, preservatives, and more). I think environmental factors are the key . . . and there are sadly way more than we can ever imagine. Vaccines are just one of the ones that I can control (as long as our government continues to give me that option.)

I think we have created for ourselves a world in which our bodies, our guts, our everything are being attacked at every moment of the day both inside and out. Our greed and our need for right here, right now has created an environment in which it is difficult for our most precious of our species - they must fight harder than ever to not only thrive, but just survive . . . and many of them can not handle the assault.

But if you ever want to really start question the medical community, having a child with food issues is a sure way to start. They still don't understand anything other than frank food allergies. Intolerances are this nefarious territory of fantasy realms. It doesn't matter if you take in pictures of rash after rash, groos stool after gross stool, and a log of refused meals, crying jags, and reflux nights. Once again the science is taking too long to catch up to the reality of our lives. And once again it seems that biochemical and natural remedies are the answer - remove offending foods, heal the guts, remove as much toxicity as possible. I have many many friends that are living this daily. When I was growing up and in my early 20s, I knew none. And for some kids, those that you mentioned with EE, there are no easy answers and no clear paths.

As for the "fake" birthday cakes. I applaud those moms for trying to give their children as normal a life as possible. They are doing the best that they can every moment to navigate new, scary, unfamiliar territory that has no real road map. Like the rest of us, they are trying to do the best that they can for the kids that they love.


Children born today are more likely to live shorter lives than their parents, a reversal of trends of the last century.

Judy, can you cite that statement? I am constantly asked for proof that kids are sicker today than ever before...would love to have that reference. Great article!!



Judy - my most aggressively vaccinated child has 41+ food intolerances. One of our biomed doctors told us that he has seen profoundly autistic children with better test results than our son (who, as far as we know, is not). He does have other issues which he has mostly overcome (thanks solely to biomed - our mainstream ped was never one ounce of help, other than to reluctantly order some tests our nutritionist wanted).

One of the thing that I find most curious with younger son is that he is very sensitive to CHICKEN and eggs. Yet he is perfectly fine with turkey (no reaction whatsoever). Wouldn't you think all poultry would bother him if he is that sensitive to chicken? I mean, who has ever HEARD of a chicken allergy for heaven's sake? Could it have something to do with the number of vaccines grown in a chicken medium?

My older son (by three years) did not get the HepB on the 2nd day of life like younger son, but did do all the other vaccines. His gut is so messed up that I'm still trying to straighten him out. Supposedly extremely shy - it's interesting that when he went off gluten and started to feel better he suddenly blossomed into a stage actor of all things!

I now have two nephews (younger than my sons) by two DIFFERENT siblings with type-1 diabetes. Can I tell you how heart-breaking it is to see a child with a pump for the rest of his life?

Even my very pro-vax parents are finally seeing the light that we are doing something to mess up an entire generation of kids.

Thank you for your article and for your chapter in "Vaccine Epidemic" - it was fantastic.

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