GFCF DIET And SCD

Updated on February 19, 2010
S.G. asks from Chicago, IL
9 answers

My autistic 3 yo son is on GFCF diet almost 16 months but I don't see any dramatic changes over this period time, the progress is slow if any. I know that GFCF is not for all autistic children, I read all the time how some kids are doing fantastic on it. I m getting frustrated and I m thinking about SCD diet, maybe this is better fit for him! I don't really know where to start, how should i do it, maybe talking to our DAN doctor is better idea. I would really appreciate any feedback and suggestions regarding that issue!

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S.H.

answers from Chicago on

Some kids do very well on supplements. I have some ideas if you'd like. Please let me know and good luck.
S.

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L.L.

answers from Chicago on

I would start with the DAN doctor before stopping. Even the smallest improvement could mean its working. He may need to add supplements, minerals, etc, or start some chelation after testing. Have you read the book 'Healing the New Childhood Epidemics, Autism, Adhd, Asthma, and allergies' by Kenneth Bock? It will help you to understand how complex all of this is. Its a long process, but I've heard of so many success stories. Faith and patience is so important, and be vigilant as the one pharmacist told me its like having a second job. Studies have shown that starting your child at such a young age has a greater chance of improvements. There are also therapies, both speech and occupational that also helps. Be cautious as to visual therapies as this has not been proven to be as effective. Which dr. dan are you seeing? L.

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E.C.

answers from Chicago on

I spent a small fortune on GFCF foods & ingredients to make my own & saw no difference in my two autistic boys. My sons' neurologist is actually skeptical of GFCF, but told me there was no harm in trying.

B.H.

answers from Chicago on

Do you have reason to suspect severe dysbiosis or inflammation? Has your DAN checked for signs of malabsortption/poor utilization of nutrients, other IgG mediated food sensitivities via a blood sample, markers of inflammation and dysbiosis and poor pancreatic function in the GI (stool test)? For my son, it isn’t just wheat and dairy that we avoid, but also egg, cashew, and oat—all foods to which he has tested with elevated IgG titers and in some cases IgE titers per testing recently and 3 years ago. For the first 2 years (from his autistic regression/development of severe GI issues which occurred in parallel days after a flu shot at a 3 year “well child” visit) we had many episodes of severe chronic loose stools despite supplements, GF/CF/Egg free/oat free diet control, probiotics, nutritional support, etc. Last spring after a particularly bad episode we tried SCD for a few months during which we turned to lots of organic homemade chicken soup with bone broth (and the geletain prepared from feet if I can get them) plus more pancreatic support. Because we didn’t see a dramatic improvement with SCD and it was hard to maintain for us, the Gorrilla Munch and Vans GF waffles came back over summer in moderation and but the chicken soup stayed on (I’ve also been juicing veggies and fruits for him for 1.5 years which I modified during SCD months). Finally this fall he had improved in consistency to the point he was able to potty train right before turning 6. He is still severely autistic, but making slow/steady progress over 3 years and his gut is way healthier than its been in 3 years, plus the potty training is HUGE. So, while the special diet hasn’t cured his autism, he is a lot healthier and more available for therapy because of the diet and I know there are foods that will provoke his immune system that we need to continue to avoid.

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S.H.

answers from Chicago on

Sywia:

You may want to get the Book by Elizabeth Hasselbeck, it goes over how to cook Gluten Free. As usual, let your pediatrician know, so that you have their blessing.

Best of Luck! S.

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J.W.

answers from Chicago on

Hi S.,

60% of kids improve on a GFCF diet, so it is not for all, but worth a shot. These mom's also get rid of food dyes, artificial sugars, flavors, MSG, etc, while it is quite an undertaking, it is really a better way to eat for all of us. :) I follow GFCF and soy-free diet for my health issues and my 2yr old. I have heard some great success stories in the SCD diet for autistic, celiac, IBS alike, get the book and read through their website. There is a few places you can go too and I'll refer you to a a good friend of mine, Jen Cafferty founder of Gluten Free Cooking Expo at www.gfreelife.com please tell her I referred you. She does consultations for the autistic community and is head of the Gluten Intolerance Group of Greater Chicago...she also writes for the examiner and posts recipes as well: http://www.examiner.com/x-12164-GlutenFree-Food-Examiner and has a great resource list on her webpage.

Good Luck, feel free to send me a message if you have any more questions.
J. W. MPH
Maternal and child health educator
Chicago Family health Examiner
http://www.examiner.com/x-7158-Chicago-Family-Health-Exam...

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K.S.

answers from Chicago on

Hi - I don't know anything about the scd diet. my daughter and i have been on the gfcf for adhd for 2 years and the results are dramatic. In networking with others I do know that results are as unique as your child. i would highly encourage you to talk to your DAN doctor but also a nutritionist. If he is highly sensitive, you might be surprised at the hidden gluten and casein in so many common foods - just double check to make sure you are 100% gf cf ;-) Good luck!

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J.W.

answers from Chicago on

We were on GF with my 3 year old autistic daughter as well when her doctor had us put her back on gluten so that we could have her tested for an actual intolerance. Unlike you we had a drastic improvement when we removed it, but when we reintroduced it, there was no regression. In fact it didn't seem to effect her either way. I would discuss it with your doctor, but if you aren't seeing positive results, it is an extremely expensive and difficult diet to keep up (especially if you are out of your house).

A.T.

answers from Bloomington on

Dear S.,
My autistic son was on the GFCF diet for almost two years. He is 5 now. We took him off the diet and it made no difference. Personally I think we were throwing our money in the toilet buying all that special food. Plus it was torture for him. Therapy is the only thing that really works for us. We were a part of a bio-medical group in our area. A bunch of these parents were doing all kinds of bio-medial and DAN stuff with their kids. They were getting almost no results. Pretty much the same as us. There were spending tens of thousands of dollars for no results. I would focus on therapy. If you want to talk further, I can let you know what stuff has worked for us. My son is doing great now - he even potty trained last year!!! I know it takes a while to try all the different approaches and see what works for your family. Good luck and don't hesitate to email me!
A.

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