In April, we asked parents to share their stories of autism and GI difficulty. We received 101 responses. The media is reporting on a study of 22 children, 14 of whom completed the study, which concludes that the GFCF diet is of no help to our children. It seems everyone knows what doesn't cause autism and what doesn't treat it.
We'll be running the emails we got from parents in a series of posts. Thank you to everyone who responded. Here's the first batch:
I have a son, Ryan, who just turned 4. He was diagnosed with Autism at approximately 24 months of age. I am sure you don't want a book so I will try and be brief. I also have a daughter who is 18 months older than Ryan.
Age 2 months - diagnosed with stomach ulcers and reflux (please note my daughter had the same problems). Started using Pro-sobee soy formula.
Age 12 months - Could not transition Ryan to any food with "chunks". Transitioned to Silk Soy Milk.
Age 18 months - Started speech therapy for eating problems - told he had sensory disorder.
Age 24 months - Autism diagnoses
8 weeks ago Ryan seemed to be having more meltdowns. During a visit with his developmental pediatrician he had a major meltdown. We commented that he seemed to be in pain and distress and the pediatrician agreed. We were put in touch with a pediatric GI doctor who has experience with kids in the spectrum. We scheduled a visit with the ped GI since we had a feeling that something wasn't right.
4 weeks ago Ryan was hospitalized for low hemoglobin and poor nutrition. His eventual diagnoses was Celiac Sprue (gluten allergy). For the last 3 years the only thing we could get Ryan to eat was peanut butter and jelly on honey wheat bread!
Needless to say, Ryan is now on a gluten free diet. By his own choice and desire to drink Soy milk we can easily call his diet gluten and casein free.
Right now we use an NG tube for night feedings and let Ryan eat during the day. He will drink his soy milk (from a special cup) and he eats peanut butter straight from the jar. We can not get him to try any other food.
I hope this isn't too much information. Right now we take it 1 day at a time. Ryan is getting stronger and we have definitely noticed he is happier. Maybe it is just optimism and hope, but we feel he is starting to be more verbal and definitely echoing more words. Time will tell.
My son has chronic consipation, no matter what I do for his diet. It started out with multiple trips to the ER for it, finally we were referred to a GI, who did a sitz tests, the markers were still inside him after 2 weeks. The GI doc put us on a regimen of Miralax, it is the only thing that Ive tried that works, so we do a capfull everyday , sometimes it still doesnt work and I have to do 2 capfulls. At that point it is like water and a very big mess. My son was dx'd with autism about 8 mos ago. There doesn't seem to be much in the way of physicians who are familiar with autism, I think we have one DAN! dr, but 3-4 hrs away and does not accept my insurance. We do receive speech and occupational therapy from the local childrens hospital early intervention program, and are on a waiting list for behaioral therapy and sleep therapy.
Although he's better now, when Parker was diagnosed with autism at age 2, his stomach/gut was a disaster. Alternating between severe constipation and massive, acidic diarrhea, he'd be awake most nights crying due to stomach pain.
His bottom was red, irritated, and often yeasty for years.
And when he did have a bowel movement, it was often like red clay...and smelled so incredibly foul, people would have to leave the room. He wasn't able to potty train until he was 6 years old. A week after we started the GF/CF diet, he went into the bathroom, sat down on the toilet, and had his first bowel movement on the potty.
It should also be noted, my neurotypical daughter, who was vaccinated until age 2, also has severe stomach issues and problems with maintaining a balance in her gut flora.
Stomach issues have definitely been a big problem for our family.
We've treated these problems by starting Parker on the GF/CF diet (with limited soy), and eliminating dairy from Autumn's diet. Both children also receive one to two daily doses of probiotics, digestive enzymes with each meal, drink 2 ounces of aloe juice daily, and receive periodic treatments with S. Boulardii. This seems to do the trick for us. However, I'd also like to mention, none of these treatments were recommended by mainstream doctors.
Not sure how or if to respond, as Erin was never officially diagnosed as on the spectrum. But it was her GI specialist who first brought up the possibility that she might have autism. (She was never subsequently diagnosed as on the spectrum.) She would have bowel movements sometimes every ten days. As for the autism, she had the echolalia, refusal to answer questions, didn't play with others at all when she was three. Frankly her father thinks she's aspie.
What did I do? When I first heard the word 'autism' I contacted ARI. Was familiar with Dr. Rimland's work from when I was in college so that's who I contacted. (Always felt I was just on the edge of the spectrum myself). Put Erin on a no casein diet for around oh nine months or a year maybe. I think it helped.
She still has diet issues. Lots of foods that will make her sick if she eats them. And of course aspie issues as well I think.
Her father, btw, has colon problems. In fact has had his large intestine removed due to Crohns or colitis, they couldn't say exactly which as he had symptoms of both..
Bennett started vomiting at around 10 months or so and gradually got worse with adding GI on top of that around 1 year. The pediatrician didn't seem concered and said it was ok to keep vaccinating. His last vaccine was at 2 years old. He was gone way before then. He is now being treated by Thoughtful House and Dr. Authur Krigsman. He is thriving and re-learning was he knew @1 year old. He has the mental ability of a 5 year old, very smart but verbally still at about 18 months. I know it was the vaccines that he couldn't handle and the MMR just was icing on the cake.
My son has autism and constipation. After starting bio-med and finding the right combination of probiotics and supplements he is regular. If we stop any of the probiotics or supplements he gets stopped up again and complains of a 'stommy-ache'.
My son was a very cranky baby. I suspected gastro-distress from the beginning, although the drs just said 'some babies are like that'. He cried and screamed constanly and could not be soothed. He had to just wear himself out to sleep, which he did in mainly 30-minute blocks. After starting solids, the constipation started. Sometimes for 7-8 days. Again, drs were not much help - 'just give him Miralax'. Forever?? At his 4 year birthday he was still not potty-trained. It was very difficult for him to know when he had to go. A couple months later we started bio-med and he trained in 7 days. After tweaking his vitamins and supplements, he starting going everyday. We tried to take him off of one of the supps and the constipation returned. His DAN! ordered a comprehensive stool anaylis and we are awaiting the results to try and figure out what going on in there.
One thing to note, at nearly 5 years old, he has never once vomitted, which seems odd.
My 14 year old son who reacted to his 15 month vaccinations and was subsequently
diagnosed with autism, has had on-going reflux problems for as long as I can remember.
Years ago I took him to a gastric dr. who said it was probably a self-stim! Not!
Yes my son has autism and GI problems. He has an intestinal disorder called Hirschsprung's. He had a pull threw at 8 months old. Continues to have constipation. But once I learned about the gfcf diet at 12 years old I put him on it. And it made a huge difference. Didn't learn about diet from any doc, of course. But from autism group. My son was diagnose with autism at 11 years old.
My son is 14 years old and has aspergers he also has GI problems, he has suffered from them since he was a small child. When he was little he would get such bad pains in his stomach that he would go into what they called a semi coma state. We have ended up in the ER several times with this coming out with no answers. As he has gotten older he does not go into the semi coma state anymore but the pains he gets are so sever that he is not able to function.
They have put him on nexium as a latest treatment however it is not doing anything for him. We have also tried to limit his diet(put him on the Fiengold diet) thinking that food might be causing it but that has not seemed to help either.
I would love to have some feedback if anyone has found anything that works for this.
Charlie's diarrhea started between 12 and 18 months old. For over 4 years he filled 10 or more diapers every day. He was nonverbal during that time so he expressed his pain and suffering by screaming and hitting his stomach. Our pediatrician told us it was "normal childhood diarrhea" and was nothing to worry about, the behaviors and the fact that he wasn't speaking were our fault for spoiling him. Once the autism diagnosis entered the arena (at age 4 1/2), the game changed. It took several tries, and unfortunately several wasted years, to find a DAN doc that could help, but we did in Dr. Georgia Davis. Together we determined Charlie needed to see a specialist, so when he was 6 1/2, I took my son to Dr. Krigsman. After only a few months of treatment the diarrhea started to wane. Not long after that it went away completely. Charlie is 8 1/2 now and has solid poop; but more importantly, he no longer suffers with the pain of his GI disease. He has gained back his language (and then some!), and is a happy boy. He went from special education to functioning very well in a typical 2nd grade classroom, no aide. I have pictures of his pill cam and upper/lower scopes on my blog charlieinwonderland.com. Kim, I will email the links to you. We return to Dr. Krigsman this summer for follow-up pill cam and scoping, at which time I fully expect to see a different, disease-free picture. I will post those pics on my blog once I get them. GI disease and autism are real. So many children are suffering. It's so sad.
pics on my blog:
upper and lower scopes: http://charlieinwonderland.com/?page_id=645
Inflammatory bowel disease since the age of 2. Diet very important to follow. He takes a number of meds like pentasa for IBD, nutritional supplements, including lots of probiotics and meds to build his immune system. We have to deal with lots of viruses and bacteria that invade the gut. When not kept in check, this presents as gut pain and difficult behavior. Very difficult to monitor the bowel movements as he gets older(and understandably so) because he demands his privacy. Periodic testing is helpful.
Our 4 year old daughter, Jillian regressed into autism very shortly after her 12 month MMR. Since that time she has also had alternating bouts of constipation and diarrhea. We have done many urine and stool analysis tests over the past few years to find that without intervention she has a severe gut dysbiosis. We have treated her GI issues over the past 2 years with interventions such as diet, probiotics, colostrum, Bactrim, Flagyl, Diflucan, Vancomycin, Nizoral, Nystatin, and Valtrex, as well as a course of Secretin infusions. She is now fairly well regulated and many of her autism symptoms have diminished significantly. Of interest to us though was the results of her immune function test which showed extreme elevations in her measles, mumps, and rubella antibodies as if she were continuing to fight active infections 3 years after her only known exposure (MMR). We have not yet done an Endoscopy but we would be very curious to see biopsy results from her GI system.
As a side note, we also have a 7 year old neurotypical daughter who developed a peanut allergy within days of receiving her first (and only) MMR.
My son began experiencing severe GI problems right after his 3 month check up. What began as severe, explosive, 2nd degree burn inducing diarrhea after a round of vaccines would eventually turn to painful constipation that would leave him crying for hours and hours on end until he would finally squeeze out a small amount. According to my pediatrician, it was perfectly ‘typical’ for some kids to not poop for 2-5 days.
What eventually helped ease my son’s bowel problems was a GFCF diet, high quality probiotics and Omega oils.
First, thank you for all of your dedicated hard work on behalf of your children and the autism community. I myself have two ASD children, one of whom has chronic constipation.
She is dependent on Miralax, and must have it everyday, or otherwise the cycle starts up again. I do not think that the constipation is"behavioral" etc, but something going on with her intestines/gut. My girl is 9 and is a ball of energy and life. My other ASd kiddo, does not have chronic constipation, but has it on occasion. I have no doubt in my mind that GI-Autism issues are real.
My son Cameron, age 3, has PDD-NOS and ADHD. They also told me they may change his diagnosis to Aspergers by the time he's 6. He has ALWAYS had GI problems and it was not until I did my research that I found out children with any AS Disorder have an abnormally larger amount of bacteria in their gut than children without Autism. My child has alterations between diarrhea and constipation every single day and has since he was 8 months old. I can easly go through 6 "stinky" diapiers a day. I am interested in reading others responses! Thank you
My 22-year-old autistic son Benjamin Burns had severe colic and chronic ear infections from infancy through early childhood. His lab tests this year indicated inflammatory bowel disease and a pattern consistent with Crohn's, but it could be autistic enterocolitis. He is on an elemental formula GF/CF diet under the care of Dr. Jepson at Thoughtful House and is responding well.
Yes! My son is 6 years old. He has autism and GI problems. His main problem is chronic loose stool. We tried working with our pediatrician, who blamed it on the fact that he is not potty trained and his sphincter muscles are not properly trained. When I asked him why certain foods (such as grains & nuts) make his loose stool significantly worse, he had no answer and dodged the question. He suggested that we try imodium for him, which caused my son significant distress. When I followed up with our pediatrician for more ideas, he threw his hands up in the air and said he doesn't know what I expect from him. We had a 7 month wait to get into our local pediatric gi clinic. They did an upper gi and said that everything was fine. They said that chronic loose stool isn't normal, but it's "his normal". We tried an alternative doctor and did food sensitivity testing. Eliminating the problematic foods only helped a little. After several months on an elimination diet, we saw very little improvement in his GI symptoms. The only thing that has helped us is the Specific Carbohydrate Diet. We didn't see improvement until several months into the diet, and after 9 months on the diet, our son still has loose stool, though less frequently. He does continue, however, to seek pressure on his stomach and seems to be in pain. Since he is not very verbal and has never complained of a thing in his life (like a sore throat, hurt ear, etc.), we can only guess by his behavior that he is in pain. At this point, we are not sure where to turn. The alternative doctor, GI doctor and pediatrician have been of minimal help to us. We wish we had somewhere to turn that accepted our insurance and paid attention to our son's symptoms. We know that if he is in pain that he cannot progress to his potential. He's a sweet boy with a bright future, and it will be much brighter if we can find a doctor to help us figure out what is going with our son's GI issues.
My son Nick is 5 yrs old. We live in Cambridge, MA. Nick received the
Dtap, MMR, and Hib at his 15 month 'well-visit' to the pediatrician. At
the time he had an ear infection, chronic since 12 months, and was on
yet another anti-biotic. Within days of this visit he developed
explosive diarrhea, yellowish, rankest smell, all the way up the back
and down to the knees, about 4-6 times a day. This continued until we
began bio medical treatment just before his third birthday. Within 10
days of these shots he became inconsolable much of the time with
screaming episodes and arching of his back that was so violent he
almost shot out of my arms several times. He also developed what I
thought were night terrors-he would wake screaming, a sound I will
never forget, not like anything I have ever heard from a child before,
couldn't recognize us, didn't know how to nurse even though he'd been
breastfeeding for 15 months and it would take almost 40 minutes to calm
him back to sleep. I now believe those were encephalitic episodes. That
happened about six times. At this juncture all his language was gone,
he began to obsess over the washing machine, spin objects, and
completely withdrew into his own world. We could not take him anywhere
without him screaming By 21 months he was diagnosed with Autism.
Since then we have found on endoscopy and colonoscopy with Dr. Buie at
MGH in Boston that he has LNH in his small intestine. Through SPECT he
has been diagnosed with Absence Seizures. On the Anne Connelly Test
through Washington University in St. Louis he was diagnosed as IgM
positive. He has inflammation in his brain and gut. As we treat and
heal the inflammation, the behavioral symptoms of his Autism lessen. What's working; gfcf diet, Pentasa and Ultrase, 6 month course of Vancomycin for Clostridia, Diflucan for Yeast, VSL#3ds Probiotic, tons of supplements, and a lot of love and hope. He was born completely healthy. No one can tell me this didn't happen, I was there.I was holding him. I am his mother.
My daughter, Emily started having severe GI problems weeks following her immunizations (3, including MMR) at 14 months old. She developed pretty much normally until that day, now even after years of biomedical intervention she still struggles, reacurring yeast/bad bacteria (HPHPA) which she takes Nystatin (going on 3 yrs. now), flagyl, sac. boullardi, and Ther-biotic complete every day. She has many food allergies and intollerances, immune problems, and pollen/mold allergies. We live in Bedford, Texas ( mid-cities, DFW/Ft.Worth area) and every time we get the wind shift from the South she gets very stimmy and her sinuses act up, also trouble sleeping.
My son Andrew is eight and has been gf/cf for 6.5 years and scd for almost 5 years. We have been to three GI specialist, which refused to do any tests because he is autistic. We went to two immunologists that refused to even draw blood because there might be a vaccine injury. Last year we took him to UofC Irvine to see Dr. Gupta who diagnosed him with hypogammaglobulinemia from his MMR. IVIG has helped, but we are also fighting testosterone and precocious puberty with Dr. Geier. He has come further in the past three months than in the past three years. He would have been savable, but no one wanted to help.
I speak publicly several times a year, I am a rescue angel for Generation Rescue and I want the truth to be known to save other kids who are born "normal" and poisoned into autism.
My son, Ethan, 5 years old was diagnosed with ASD 2 years ago. He has chronic nausea and vomiting. We've attributed it to his motion sickness. He vomits after playing certain toys with blinking lights and spinning parts. The doctor makes sure he doesn't have fever and/or diarrhea, then prescribes him zofran which works very well.
My 4 year old son, Alexander first started regressing into autism at age 2. He met every developmental milestone, until one day he just started going backwards (correlates with the mmr)
My first concern was not autism, it was chronic constipation. His little belly would get super distended and bloated, and he wouldn't have a bowel movement sometimes for a week!
He started getting super dark circles under his eye's and he stopped sleeping.
We started organic ,gfcf diet, right away (helped tremendously)
Started bathing in Epsom salt, helped for a while, but the constipation would somehow find it's way back. We started giving him Mila, The miracle seed, in all of his food.
We started using Himalayan salt and sole, juicing his fruits and vegetables and following more oft the bio-medical protocol.
Today, I am thrilled to report that he has had a bowel movement everyday for 60 days, his dark circle's are fading and he now talks in full sentences, where he wouldn't be able to say one word at age three.
The most stressful part of this journey has been his gut issue's. We have been to several doctors, GI Specialist, etc. They all would say it was just part of autism.
My husband and I never accepted that answer, and have been dedicated to his full recovery ever since.