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Does anyone here have their PANDAS child on a gluten free diet? I have been planning on starting it for myself, as I have a few autoimmune issues that are supposedly cured by it. It so happens I read an article today that these autoimmune issues are found in 25% of the mothers of PANDAS kids. So I'm thinking if a gluten free diet will help me, and if my autoimmune issues are somehow the cause of my sons, it might help him too, right? I was initially not going to put him on it, as its a very difficult diet to follow and once you remove gluten it can really mess you up if you accidentally ingest it or fall off the diet. My husband is not going on it and we eat fairly healthy anyway so I wasn't concerned with him not being on it but now I think it may help. Anyone?

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OK 3rd time I am trying to reply, keeps erasing>> uggh. We tried it for several months, very stressful, expensive, and no effect on issues. Made her feel even more different. We thought PANDAS for almost a year and treated, then found LYME +, treating for lyme has been VERY SUCCESSFUL. Went back to our normal healthy eating habits. I don't recommend it from our experience but I know others feel it helps. This is just our experience.

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I'm a gluten free vegetarian & I'm careful to stress that while my diet helps with my symptoms, it only makes a noticeable difference in those RELATED symptoms. Lots of kids with PITAND, including myself, have pretty horrible gastrointestinal issues & mine literally disappeared when I cut out gluten but it didn't do much, if anything, for my mental problems. There was a poll on here about just that some months ago, actually.

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We are gluten free. I don't see where it has helped PANDAS symptoms but my daughter has had terrible stomach problems since birth and she has had strong improvement in that area.

 

I will say that it was hard at first but once you get used to it and find good products, it's fairly easy. It's just a way of life now.

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My dd is also gluten free. Did not switch the whole house G/F. I put her on GF/CF/SF 2 years ago, first 'bio-med' thing I did, and we did see improvement- looking back, I believe it was to the fact it reduced inflammation.

It also helped get her to eat healthy foods- before doing the diet, she would eat NO meat- no proteins.

Soon after the diet, she started eating meats and proteins, much healthier. She was never a milk drinker, so she did not miss that- and now a days, there are MANY gluten free options in the grocery stores.

 

She now has a milk smoothie kefir type thing every morning, and I am not militant about the soy if it is in an ingredient.

But she is still 100% gluten free. Afraid to take her off and possibly rock the boat, so we stay GF. She does not have celiac disease, I did test for that at one point (through salvia DNA.)

You can always give it a trial for 1 month, doing it 100%, and see how you feel, what you observe.

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Hi,

 

The GF/CF diet is helpful for many people on the autism spectrum, because they tend to have gut problems and crave carbs, which doesn't help. The theory is that the protein (gluten and casein) isn't digested properly due to gut dysbiosis/leaky gut and it breaks down to opioid peptides which impact on concentration/focus and affect pain threshold, which can further mask problems.

 

DS17 was diagnosed last year with Aspergers, then leaky gut, then PANDAS... We went the Biomed route and with testing we found a bunch of deficiencies and a sensitivity to casein. In order to help heal his gut (along with vit supps and probiotics) we've all gone GF/CF, no potatoes, low grains, low sugar etc, or in other words we eat plenty of meat, fish and veggies and we're all healthier as a result. I'm hoping like crazy that in healing his gut, his immune system will be in better shape to fight off future infections. So far so good.

 

DS reported he is better able to concentrate - his words "It feels like the fog is lifting." I attribute that to the GF/CF diet. The gluten stays in the gut for a couple of months so for some people it may take that long for real progress to show up. Casein stays in the gut for a few days to a week so improvement there may be more obvious. For us we saw gradual improvement over about two to three months. (It did take us a while to completely eliminate gluten - it's surprising where you'll find it (bacon for eg! It's possible to get it GF.)

 

It's not as hard as it might seem. It helps to think in terms of what we can eat, rather than what we can't. We will continue on the diet because we feel good on it. Good luck.

Edited by Ozimum
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