Kate’s mom Suzanne used to try often and hard to push a gluten and dairy free diet on me, even pointing to the fact that many with Autism do better on a gluten free diet. I used to take her so serious that when she went out of state for a show I made cheese stuffed egg shells for Kate and her dad. I’m now starting to reconsider as I want to get better and one day repair my relationship with Kate.
I would like opinions from people on the Autism Spectrum or their family members on whether a gluten free diet does really help those on the autism spectrum. I would also like to know how it has helped those on the spectrum.
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The diet in relation to autism was originally based on the opioid excess theory, which has been discredited after studies like Absence of urinary opioid peptides in children with autism – freely available on the web.
I have personally went on a casein free diet because of my parents’ insistence, based on a liquid chromatography test for urinary opioid peptides, but noticed no significant benefit.
Good luck.
From what I understand, Zach, that diet is only effective for children and even then only if there are issues with gluten and casein – which is not always the case.
As far as getting better in general is concerned, I recommend proper psychological support – which of course (as you know) is not available in Michigan. That’s why – again – I recommend a move to Indiana. Provided of course they have what’s needed. What you need right now above anything else is a boost to your self esteem. That has taken a real battering.
I have heard here at work around the water cooler that doctors who reccomend the diet do so to those who are on the spectrum who also have gastro intestional problems. Those who tend to have constant stomach problems for various reasons. And in those cases, I can understand why such a diet would be a good thing, with proper supplements to make up for the viatmins missed in such a diet.
And if you have an LFA, who has difficulty communicating, in pain because of thier stomach, it makes sense that with such a diet, they would improove.
That being said, the diet does not work for everyone on the Spectrum. Even though I have always had stomach problems (this is inspite of whatever I happen to eat) I’ve never been on this diet, and I’ve done just fine!
Now I don’t buy into the whole biomed bs but a couple of things you might want to consider. Herbology is becoming an interest of mine and here are a couple of things that help me. Ginko Bilboa is excellent for memory and for kick starting the mind! It helps me to remember information longer. And St. John’s Wort is excellent for relaxation, anxiety, and depression! And if you have a strainer, White Willow Bark tea is excellent for aches and pains.
LFA or HFA sorry!! typo!
“I have heard here at work around the water cooler that doctors who reccomend the diet do so to those who are on the spectrum who also have gastro intestional problems.”
Do they also recommend the diet to those who are not on the spectrum but do have gastro-intestinal problems?
To answer your question Alexa, I did a little research, and this is what I found.
From http://www.publix.com/wellness/notes/Display.do?id=Diet&childId=Gluten_Free_Diet
“Why do people follow this diet?
Celiac disease (also called gluten enteropathy) is a disorder of the small intestine characterized by sensitivity to gluten. In people with celiac disease, eating gluten causes inflammation in and damage to the lining of the small intestine, resulting in diarrhea, malabsorption, fat in the stool, and nutritional and vitamin deficiencies.
A gluten-free diet is the primary treatment for celiac disease. Strict avoidance of wheat, barley, and rye (the three most abundant sources of gluten) usually improves gastrointestinal symptoms within a few weeks, although in some cases improvement may take many months. People with celiac disease must remove all gluten-containing foods from their diets in order to relieve symptoms. Following a gluten-free diet has been shown to reduce the incidence of cancer, low bone mineral density, and infertility in persons with celiac disease.
People with dermatitis herpetiformis may benefit from following a gluten-free diet. The cause of dermatitis herpetiformis is mainly an allergic-type reaction. Gluten-sensitivity enteropathy is found in 75 to 90% of people with dermatitis herpetiformis. Unlike celiac disease, however, gastrointestinal symptoms are mild or absent. Strict adherence to a lifelong gluten-free diet can eliminate dermatitis herpetiformis symptoms and intestinal abnormalities, as well as reduce or eliminate the need for medication in most people. However, an average of 8 to 12 months of dietary restriction may be necessary before symptoms resolve. Not all people with dermatitis herpetiformis improve on a gluten-free diet. Preliminary studies indicate sensitivity to other dietary proteins may be involved.
Preliminary evidence suggests that a gluten-free diet may help improve symptoms of rheumatoid arthritis. In one trial, 14 weeks of a gluten-free (no wheat, rye or barley), pure vegetarian diet, gradually changed to a lactovegetarian diet (permitting dairy), led to significant improvement in rheumatoid arthritis as evidenced by associated symptoms as well as by objective laboratory measures of disease.
HIV enteropathy, a complication of AIDS that is characterized by weight loss and chronic diarrhea, may respond to a gluten-free diet. In a preliminary trial, men with HIV enteropathy experienced a reduction in the number of episodes of diarrhea as well as significant weight gain while following a gluten-free diet.
For many years, researchers have been speculating that certain dietary proteins, including gluten, may contribute to the symptoms of schizophrenia. People with schizophrenia are more likely to have immune-system reactions to gluten than the general population, according to some studies. While clinical research findings have been inconsistent, some, but not all, people with schizophrenia may benefit from a gluten-free (and dairy-free) diet.
What are the symptoms?
Individuals who are sensitive to gluten may have the following symptoms:
Abdominal cramping and pain
Bloating and flatulence
Bone and joint pain
Canker sores
Chronic diarrhea
Delayed growth or short stature
Dyspepsia
Emotional disturbances, such as anxiety and depression
Fatigue
Infertility
Painful skin rash
Weight loss”
I hope that helps!
I did some research to answer your question and this is what I found.
From: http://www.publix.com/wellness/notes/Display.do?id=Diet&childId=Gluten_Free_Diet
“Why do people follow this diet?
Celiac disease (also called gluten enteropathy) is a disorder of the small intestine characterized by sensitivity to gluten. In people with celiac disease, eating gluten causes inflammation in and damage to the lining of the small intestine, resulting in diarrhea, malabsorption, fat in the stool, and nutritional and vitamin deficiencies.
A gluten-free diet is the primary treatment for celiac disease. Strict avoidance of wheat, barley, and rye (the three most abundant sources of gluten) usually improves gastrointestinal symptoms within a few weeks, although in some cases improvement may take many months. People with celiac disease must remove all gluten-containing foods from their diets in order to relieve symptoms. Following a gluten-free diet has been shown to reduce the incidence of cancer, low bone mineral density, and infertility in persons with celiac disease.
People with dermatitis herpetiformis may benefit from following a gluten-free diet. The cause of dermatitis herpetiformis is mainly an allergic-type reaction. Gluten-sensitivity enteropathy is found in 75 to 90% of people with dermatitis herpetiformis. Unlike celiac disease, however, gastrointestinal symptoms are mild or absent. Strict adherence to a lifelong gluten-free diet can eliminate dermatitis herpetiformis symptoms and intestinal abnormalities, as well as reduce or eliminate the need for medication in most people. However, an average of 8 to 12 months of dietary restriction may be necessary before symptoms resolve. Not all people with dermatitis herpetiformis improve on a gluten-free diet. Preliminary studies indicate sensitivity to other dietary proteins may be involved.
Anecdotal evidence suggests that people with psoriasis may improve on a hypoallergenic diet. Three trials have reported that eliminating gluten (as found in wheat, rye, and barley) improved psoriasis for some people. A doctor can help people with psoriasis determine whether gluten or other foods are contributing to their skin condition.
Preliminary evidence suggests that a gluten-free diet may help improve symptoms of rheumatoid arthritis. In one trial, 14 weeks of a gluten-free (no wheat, rye or barley), pure vegetarian diet, gradually changed to a lactovegetarian diet (permitting dairy), led to significant improvement in rheumatoid arthritis as evidenced by associated symptoms as well as by objective laboratory measures of disease.
HIV enteropathy, a complication of AIDS that is characterized by weight loss and chronic diarrhea, may respond to a gluten-free diet. In a preliminary trial, men with HIV enteropathy experienced a reduction in the number of episodes of diarrhea as well as significant weight gain while following a gluten-free diet.
For many years, researchers have been speculating that certain dietary proteins, including gluten, may contribute to the symptoms of schizophrenia. People with schizophrenia are more likely to have immune-system reactions to gluten than the general population, according to some studies. While clinical research findings have been inconsistent, some, but not all, people with schizophrenia may benefit from a gluten-free (and dairy-free) diet.
What are the symptoms?
Individuals who are sensitive to gluten may have the following symptoms:
Abdominal cramping and pain
Bloating and flatulence
Bone and joint pain
Canker sores
Chronic diarrhea
Delayed growth or short stature
Dyspepsia
Emotional disturbances, such as anxiety and depression
Fatigue
Infertility
Painful skin rash
Weight loss “
as someone with no gluten problems, there is no reason for me to cut out a necessary vitamin and nutrient source.
As has been said, the gluten free diet will only work if a person has been tested to have problems with gluten, and thus cannot be considered a universal treatment. It is understandable that if a person is feeling better from relieving a medical issue, that their abilities and general mood will improve. I have yet to see someone who is in a good mood or does well when they’re feeling sick.
If you are interested in the topic, I wrote about why we tried at GFCF diet with out children here -
http://autismjabberwocky.blogspot.com/2009/08/why-we-tried-gfcf-diet.html
And the results we say after putting our children on the diet here -
http://autismjabberwocky.blogspot.com/2009/08/our-results-with-gfcf-diet.html
My mother tried to pull that one on me when I was sixteen. I was insulted by this thinking that I would be better or cured by some diet that’s better used for someone who has issues with gluten or casein. I’m kind of hypocritical when it comes to biomeds; I take issue with biomedical treatments being used by NT parents of autistic children, just read plenty of reviews on Amazon by NT parents applauding authors of one book on this (namely Jenny McCarthy), claiming that it cures their autistic child’s issues. Some are dumb enough to misspell asperger’s( one spells it aspbergers or some misspelled variation of it), others play entitlemoo by telling any medical professional who leaves a review that they have no business posting a review since they don’t have an autistic child.
Zach, my son, who was diagnosed at two and a half, benefited immensely from the diet. He had no GI issues at all, but I was desperate and willing to try anything and everything to help him. At the time, he had at most 50 words; he hardly ever used them to communicate and never produced a sentence. He had plenty of stims, no eye contact, constant tantrums, antisocial behavior, sensory integration issues and a very, very limited diet.
First, I cut out all dairy, a month later he started speaking in sentences. I immediately cut out all gluten, soy and processed foods, six months later he lost his diagnosis. It took us several years and lots of acupuncture, chiropractic neurology, cranial sacral therapy and most importantly, homotoxicology before he was fully neurotypical.
He turned seven last week. He has been mainstreamed for two years, has lots of friends and is completely indistinguishable from his peers. He still refuses to eat anything that contains gluten or casein – he tells me that it makes him feel sick and foggy.
It seems to really help some people, and not others. I’m a bit opposite. If I go without dairy for to long I start to get sick. I already have issues with how smalll I tend to be so cutting out dairy would make that worse. But I have heard many parents talk about the benefits and how much it has helped thier child. I would say in this case, if it will or will not work for you would be based on an individual basis.
Hi, I am on a gluten-free diet as is my grandson with high-functioning autism. He had severe vestibular problems as a preschool child, could not use the toilet when he sat on it, couldn’t stand a carousel or a boat ride, and also had chronic loose stools. I have a genetic immune deficiency (IgA deficiency) which has also been found in 8% of the people on the autism spectrum, and it raises the chance of celiac disease. When my grandson was five, I was diagnosed with a DH rash and gluten enteropathy. We had him tested serologically as well and he had very high antibodies against gluten, some against casein and also positive anti-tissue transglutaminase antibodies, which are specific for celiac disease. Off of gluten, he was completely able to use the toilet in a few days, with no further accidents, and to tolerate and enjoy the carousel, boat rides, etc. We believe that he had gluten ataxia. The anti-tissue tranglutaminase antibody is known to attack brain cells in the cerebellum as well as the intestine. His bowel function cleared up too. Both my rash and my twenty-year long chronic diarrhea is gone. It is known that the DH rash and the gluten ataxia may be present when the atropy of the villi characteristic of classical celiac disease is not, so there was no reason to do an endoscopy.
I should have added that my grandson is quite articulate about how sick gluten made him and is very careful about not eating gluten even if people offer it to him. He does eat small amounts of casein without apparent problems. He thinks (rather passionately) that people could do more to accommodate us and other gluten-intolerant people in public meetings. He’s now almost nine and doing very well. I homeschool him because of the bullying by peers and teachers that he experienced in school. The school system in Florida is not appropriate for children like him, and that is the understatement of the year. Also, I should say, I have an official diagnosis of A.D.D., inattentive type, but on the online Aspie quizzes I always score as “probably Asperger’s.”
Kathleen E., PhD