Wednesday, October 8, 2008

Question: Not Getting Better on the GFCF Diet

Q: I have SUCH a similar story with my 15 month old who lost the ability to speak, wave, blow kisses, etc. He has just started with a DAN! doctor and I'm hoping for good results. I put him on the GFCF diet one month ago and I haven't seen results. If anything, he's become worse. The one positive is that his bowels are SO much better than before (chronic diarrhea). I just wonder if I'm doing something wrong with the diet. Any thoughts on hidden sources of bad ingredients? Soy? Sugar? He still has soy ingredients and some sugar ingredients. Everything I buy for him is labeled gluten and casein free. Thanks in advance.

A: First, I would strongly recommend avoiding SOY as the gluten, dairy and soy molecules are all similar. When the immune system is down it will recognize the soy molecule as a gluten molecule and you might not see improvement.

Vitamins were also an important part of our son getting better, but the ALCAT allergy testing also really helped him. We used an integrated doctor in New York City for the ALCAT test, which revealed he was intolerant of: corn, almonds, avocado, broccoli, oranges, and black pepper. We never would have figured out these intolerances out using an elimination test. Once we removed these additional things from his diet we saw huge improvements. I am not sure if the ALCAT is similar to the IgG testing. I know the ALCAT looks at how the cells react to the foods. The IgG is also used by some DAN doctors and probably is also worth looking into if you can't find anyone to do the ALCAT test.

The vitamins we found helpful (in the order we used them) were: a good multivitamin, sublingual B12, B6, high EPA fish oil, PROBIOTICS, enzymes, nystatin and magnesium.) Some were prescribed by doctors, others I discovered myself looking up symptoms and vitamin deficiencies for my daughter and then ended up giving it to him, and some were recommended by parents. He started speaking after the B12 and gradually got better with each thing we added. A good multivitamin and GI Flora (100% GFCFSF!) probiotics which will restore the healthy gut flora are two things that might help your son. The GI Flora probiotics have been recommended by a DAN doctor/environmental allergist as well as a a DAN doctor/nutritionist. And they are light years better than most probiotics.

As far as the diet, there is hidden gluten in everything--even things labeled "gluten free." See my post "Rice Dream is Not Gluten Free." Removing the other allergens especially corn and soy can be a big help. Some people see more benefit from the Specific Carbohydrate Diet because sometimes the GFCF diet has too much processed stuff and some children cannot handle any processed grains. Sugar feeds the yeast and sometimes the yeast produces toxins (alcohol and formaldehyde.) So a yeast free diet is also worth looking at. My son was 18 months when we started the GFCF diet and we were 150% on the diet with him because of his severe regression and gut issues. He basically ate homemade, organic food for a year: rice cakes, chicken fried rice with a ton of leeks, onions and garlic (they are prebiotics,) fresh fruit, strawberry and raspberry fruit smoothies and FRESH squeezed juice (apple and carrot mostly), Westsoy RICE milk, tinkyada pasta, taco meat on rice, and homemade paleo muffins and waffles made with nuts and eggs and Enjoy Life Snickerdoodle cookies. A lot of the GFCF stuff had soy lecithin in it, which we avoided completely when the neurologist told us about the soy molecule.

Your son's bowels being improved on the gluten free casein free diet is great news and is an indication that it is something you should stick with. That definitely bodes well for the future. Once the gut heals then they can absorb nutrients and heal. His becoming worse is a little worrisome, but not uncommon. There could be yeast die off or he could be getting gfcf traces here and there or he is allergic to other things (including soy) which now that he is off wheat and dairy, he is consuming more often, or he could be deficient in vitamins. They do say sometimes it gets worse before it gets better--if that makes any sense!

Also, we started speech therapy all day every day with our son to keep him connected. The speech therapist trained us to do the speech therapy. I wouldn't let him escape into playing with doors and the vacuum and keys for hours on end. I engaged him constantly by basically mimicking the very animated CONNECTED speech therapist we had. It is a lot of work--I KNOW!

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Therapy Mom said...

Excellent post! Ours ended up being soy and oats after being tested! We do eat gluten and casein, but limited. I have seen great improvements! Yeast can also run rampant and wreck havoc on the gut! We keep it and sugar low too!
Thanks for your wise words in response to her question. There are SO many kids and parents that will be helped by your response!

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Anonymous said...

In our experience with our son, there is also a 'withdrawl' period when going off of Casein and Gluten. This could last up to 6 weeks as the body is craving these proteins. Our bodies often crave what is the worst for us. My son had a terrible time coming off of these foods.

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Heidi said...

I agree with anonymous, I myself did the GF, CF and Yeast free diet for 6 months with my child so I could know what it felt like and the first month was so awful I felt like I was going through drug withdrawal but after about a month I started to feel really good and then in the coming months better than I ever felt in my life. The withdrawal period is hard and probably why you think your child is worse now. It will get better if you stick with it.

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