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Free the Butterflies - The Specific Carbohydrate Diet and Autism

Celiac.com 12/26/2007 - Can children with Autism Spectrum Disorder eat their way out of their cocoons?

Eight years ago I knew little about autism. Fifty years ago I heard that a distant acquaintance of mine had an autistic child. It was extremely unusual at the time. I needed it explained to me and was told that the child was almost totally unresponsive.

Recent statistics show that between one and one and a half million people in the USA are afflicted with autism, making it the fastest growing developmental disability. There has been a thirteen percent increase in autism since 1990.

The term "autism" was first coined by Eugen Bleuler a Swiss psychiatrist, and the term was also applied to those with adult schizophrenia. Initially parents were blamed and psychological rejection was cited as a possible cause, but over time a greater understanding evolved and an analysis of symptoms and protocols for their treatment developed.

If we examine the history of dietary intervention for celiac disease, according to Elaine Gottschall's Breaking the Vicious Cycle, initially the Specific Carbohydrate Diet was widely favored . Only later on did the gluten-free casein-free diet begin to eclipse the Specific Carbohydrate Diet for the management of celiac disease, following a small study published in Lancet in the U.K., and the diet gained enormous popularity which has been maintained to the present. Researchers published results of their work with the gluten-free casein-free diet for autism. Many people with autism noticed improvements once gluten and dairy products were removed from their diets. According to some estimates 60% of people with autism experience positive effects from the diet, and there are some reports of people recovering completely from Autism Spectrum Disorder. However, there is a subset of children who do not respond to the diet and get stalled or plateau at some point, and these people must often seek other treatment avenues.

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Less than ten years ago a few adults reported that the Specific Carbohydrate Diet was fostering encouraging progress in their Autism Spectrum Disorder children. Gottschall believed that in addition to gluten starches and certain sugars were at the root of digestive disorders. A small support group formed which followed the Specific Carbohydrate Diet to treat Autism Spectrum Disorder, and this group has grown from a handful to several thousand since its inception. The majority of its members transitioned from the gluten-free casein-free diet. Some people were told incorrectly that the Specific Carbohydrate Diet is an extension of the gluten-free casein-free diet, or that it is only suitable if the gluten-free diet fails. The protocols about food restrictions and contamination differ. The Specific Carbohydrate Diet is, however, a unique stand-alone diet.

Although children with autism who are on the Specific Carbohydrate Diet are in a statistical minority compared to those on the gluten-free casein-free diet, anecdotal reports indicate that their success rate is nearly 80%. It often turns out that some of those who initially fail have not followed the diet correctly, and they fare quite well when they start it over and do it correctly. In several small studies the Specific Carbohydrate Diet outperformed the gluten-free casein-free diet in the treatment of autism. A large scale formal study could cost up to one million dollars and therefore has not been conducted. In the absence of such studies mainstream medicine has bypassed or dismissed the Specific Carbohydrate Diet as inconclusive, but some doctors have commented that since it is a healthy and balanced diet it is worth a try. One concern is that people will abandon their medication, but this idea is not advocated by the support group.

I became interested in the autism-Specific Carbohydrate Diet connection when Elaine Gottschall invited my support on the Internet list called "Elaine's Children," which was renamed subsequently renamed pecanbread@yahoo.com (www.pecanbread.com). When I began to read the stories of improvement, progress in behavior and digestion, and of some who recovered from Autism Spectrum Disorder, I literally got chills . I began to archive those stories and combined several in a piece which I submitted to a parenting magazine. The editors were very interested but insisted on having a gluten-free casein-free diet author comment and counter my story. Since I do not view dietary intervention as a competition the article was withdrawn.

I am not sorry. Dietary intervention must not be a contest. The diet that WORKS is the diet to choose. That choice may affect the entire future of a young human being and of their family. It is critical for parents to explore, research, connect with others and become informed so they can select the best option to fit their needs.

If you want to read more about Elaine Gottschall be sure to read "All Her Children" at Pecanbread.com, and decide if this is a diet that could help your family.

Editor's Note: Celiac.com supports the idea that the Specific Carbohydrate Diet is gluten-free and can be very helpful for many people, depending on their situation. We disagree, however, with the assertion that Elaine Gottschall makes in her book Breaking the Vicious Cycle that people with celiac disease can be cured by the Specific Carbohydrate Diet after being on it for a certain time period.

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3 Responses:

an unknown user
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said this on
01 Jan 2008 11:19:51 AM PDT
I have seen evidence of this first hand in my child psychotherapy practice.
Thank you.

Jennifer ARrington
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said this on
02 Jan 2008 10:24:50 AM PDT
Thanks so much! I recently read the book by Elaine G. and was thoroughly confused by her assertion that the diet would cure celiac disease.

I was disappointed that the diet includes dairy, as I am gluten and dairy intolerant. Obviously the diet is not for me - thanks for adding in that 'the diet that WORKS is the diet to choose'. Just an affirmation of what I already believe :)

an unknown user
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said this on
02 Jan 2008 10:45:03 AM PDT
As author, I received this email comment:

'I was disappointed that the diet includes dairy, as I am gluten and dairy intolerant. Obviously the diet is not for me'
Dairy is NOT MANDATORY on the Specific Carbohydrate Diet but is often tolerated when healing progresses provided it is chosen or treated according to the Specific Carbohydrate Diet guidelines to remove the lactose. Casein allergy would indicate no dairy should be used. Children are advised to refrain from using dairy for the first three months.

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Exactly what are your allergy symptoms? Were they IgG or IgE? Allergy testing as a whole is not super accurate -- especially the IgG. Were you on any H1 or H2 antihistamines for the last five days when you were tested? As far as celiac testing, four days without consuming gluten probably would not impact testing.

I've been seeing my dr for a few weeks now about my stomach issues. We've ruled out the gallbladder and h-pylori and today I had the celiac blood tests done. From the reading I've done the past two days, it seems to me that it's highly likely that I have it. I've had digestive issues for years, but they've gotten progressively worse over the past 6 months or so. Pain and nausea when eating, bloat, eternal constipation, dh rash, at it's worse, tight cramp-like pain in a fist under my sternum, radiating through my back and around my right side keeping me up at night. Also heartburn/reflux and trouble swallowing, etc. Anyway, about 2 months ago, I needed a change. I didn't go to the dr immediately because it seemed pointless. (I've mentioned stomach ache when eating to drs before and been blown off.) So, I started the Whole30 elimination diet (takes out soy, grains, dairy, peanuts, and leaves you basically eating meat & veggies). Figured it would show me what I needed to take out of my diet and hopefully feel better. It worked- I felt great! And it seems that grains and gluten are my biggest offenders. But, now I've been off gluten prior to celiac testing. It's been 7 weeks. After 4 weeks I tested steal cut oats, that I later found out were probably glutened. And then nothing until yesterday. Yesterday I had 2 pieces of bread and a muffin and today I had two pieces of bread and then the blood test. Is this going to be enough to show up on the tests? My dr said that it would probably show up, since I had some yesterday and today and was currently having symptoms. But, google seems to say that I should be glutened for 2 wks straight before testing. Has anyone tested positive after just a little gluten? If it's negative should I insist on doing it again after weeks back on gluten? I feel awful, but do want clear answers. Obviously, gluten's not going to be a part of my life any more either way.

So just to clarify had not consumed any gluten for about 4 days before testing. I was assured by my allergist that it wouldn't affect the test. But what was alarming was that she retested my food allergies (my most recent reaction was two weeks ago) and every food allergy I have came back negative. I don't understand how that is possible. These food allergies developed when I was 20 and I am almost 24 now.

Thanks! You too! I have learned from this experience to take charge of my own health. It's nice at least that we can try the gluten-free treatment without a firm diagnosis or a doctor confirming the disease. I've also felt some of the gluten withdrawal symptoms, and my stomach pain ebbs and flows, but I'm determined to stick with the gluten-free diet to see what a difference it makes. Gemini, thank you! This was really validating and useful for me to hear. I've felt so confused through this process and just want some answers. If the biopsy results do come back negative, I'm going to follow your advice and do the gluten-free diet with repeat blood testing after a while. If they come back positive, well, then I'll have my answer. I'm supposed to get them back next week.

I have celiac and eosinaphalic esophagitis. I was put on a steroid inhaler recently. I use it like an inhaler but swallow the air instead of breathing it in. You may want to look into EOE and it's relationship to celiac. Just a thought. My swallowing and celiac seem to be related.