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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
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
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
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
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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Cycling Lady, LMAO at IBeStumped! So true. Yes, he is trying the band aid approach it seems. That's probably the most frustrating thing of all. So yesterday I get a call back from his office and they say to stop taking the Viberzi and switch back to Imodium! I reminded them that Imodium didn't work, I had already used it 8 days with no changes. His assistant informed me that that is all he can recommend at this time until he sees me at my next appointment which is 5/24! I live near Chicago and I am about to make an appointment to go to the University of Chicago hospital which is the top celiac research hospital in the country. Hopefully they can give me better answers.

7Hi jen and welcome No-one can diagnose remotely via nterwe posts but if there was such a game as celiac / gluten sensitive bingo, I would be calling 'House!' having read your account above... Lots of things fit the pattern as I'm sure your lurking has revealed. It's a tricky condition to diagnose however so you may have a little wait before you join the coolest club in town and get your funky celiac membership card For now it's really important that you stay on gluten. Keep eating it as accurate testing requires it. Ask your doctor to check the boxes for celiac testing alongside your liver blood tests. There should be enough in your history to get this without hassle but if they're reluctant INSIST and don't be afraid to assert your reasonable suspicion and wish to clarify and exclude. A good liver specialis will be aware of the possible links so you should be ok. If not gt second opinion. Ask for a full celiac panel as there are variety of tests. Find further info here There's a lot to take in, but be positive, I think you are on the right track and if so, you could soon be feeling better than you ever thought possible!

Hello, I am in a job that I travel every 3rd week...It gets challenging becuase many times I am doing audits of warehouses and they dont even have a cafeteria. I usually bring gluten-free protein bars as a back up if I have to miss a meal and then eat when I get back to the hotel. Just a suggestion because they certainly fill me up....Have a safe trip...Kelly

Hello all, I'm a new member here but have lurked for a while. I'm looking for some advice regarding my medical history, possible symptoms of celiac and next steps. General info: female, low level smoker, drink alcohol, aged 32. I started having bad gastro issues when I was around 17. Since then I've consistently suffered from chronic diarrhoea, frequent discomfort in the tummy area, feelings of dehydration despite drinking at least eight glasses a day and frequent fatigue for no real reason. In 2008/9 I visited the doctor as my diarrhoea was having an effect on my studies at the time. The doctor tested me for allergies; eggs, fish, gluten and lactose and did a "standard" blood test. Everything came back fine except my liver results, which were elevated to double (I did not the see the results for myself so can't say which enzymes etc). I was told to drink less and take Imodium. The doctor implied that perhaps I was stressed and / or anxious and, still being young plus a student who regularly went out drinking, I accepted this advice and carried on with my life. I would here add that I am not an unusually stressed person - in fact, learning to deal with my unpredictable bowels has forced me to be quite a laid-back person! Fast forward to 2016. I had been living with my partner for two years by this point who had noticed my bowel habits and informed me that this was definitely not normal. He encouraged me to try out a gluten free diet since I was apprehensive about visiting a doctor only to be fobbed off with Imodium again. I did the diet as strictly as a newbie can for around two months before we set off travelling. During the diet I noticed that after a couple of weeks of extreme tiredness I felt quite a lot better - I kept a food journal at the time which showed that I almost immediately had diarrhoea once after eating an ice-cream, i felt bloated and unwell after an attempt to make oat muffins (maybe i didn't cook them very well though!) and I felt bloated and had diarrhoea after eating some fish fried in flour (We made a mistake in ordering them but I didn't want to complain). My partner also reported that my mood swings (which I admit can be a little unpredictable) were much better. Once we started travelling I gave up and ate what I was given as we were staying with friends etc much of the time. Toward the end of our trip I started to feel extremely tired, to the point of having to stay in for "rest" days, and my guts were very unhappy. I chalked it up to irregular eating patterns, too many beers and late nights in general. During the trip I also had an extreme hangover after drinking wheat beer. And, while of course I accept that any overindulgence can make you ill, I really felt that that level of hangover was quite out of the ordinary. Finally, I developed a strange lump under my armpit during this period. Now back at home, I decided to go to the doc and check out the odd lump under my armpit. The doctor was pretty confident that it was nothing to worry about cancer-wise but she ordered a battery of blood tests just to be sure. The lump is fine (good news) but the results showed elevated GGT, high-ish ALT and normal AST liver enzymes plus signs of dehydration in red bloods / higher (but not concerning) levels of white bloods. I'm scheduled to go back for another blood test to double-check liver function and discuss results - if it is again high she will send me for a ultrasound. Does this history chime with anyone here? I know that the correct course in basic health terms is to stop drinking for some time (easily done) and stop smoking forever (easy to say...) but I cannot help but think that something else is going on here. I will discuss this with my doctor and make clear that my bowel issues have not been resolved and that the initial IBS diagnosis wasn't based on any thorough testing so to speak. In the meantime - does anyone have any advice for me in times of avenues to research or experience of similar symptoms? Gluten remains in my diet but in all other respects it could be regarded as very healthy, I think anyway... (pescatarian, plenty of fruit and veg, little to no sugar on a daily basis, not much dairy to speak of...) Thanks in advance and sorry for bending everyone's' ear about this... I guess it's just taken a long time for me to admit I might be sick and I need some help. Jen

Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac. I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.