Have you tried to go gluten free?

[thereishope]

This article led to the question, how many PANDAS/PITAND kids are gluten free and have you noticed any benefits from being gluten free.

 

Gluten Sensitivity and the Impact on the Brain

http://www.huffingtonpost.com/dr-david-perlmutter-md/gluten-impacts-the-brain_b_785901.html

Edited November 23, 2010 by Vickie

[JuliaFaith]

Our whole family is gluten-free. Originally it was started to get rid of ds12 stomach aches a year ago which worked within a few days. We naturally all just started on it and have noticed a few benefits. DS stomach aches cleared up (until his PANDAS exacerbation); my head is clear for the first time in years; lost weight around the middle area immediately (all my pants are too big now); dh cholestrol level went down to normal for the first time in years; can eat whatever we want besides gluten.

 

Hope this answers your question.

[norcalmom]

We went gluten free for a month when we were trying to figure out what was going on (right around the time we got pandas dx) I MAY have seen a VERY slight improvement over the month, but I think it was really just his pandas exacerbation waning (didn't really know this pattern yet). A couple months later We had gastroenterologist run celiacs blood testing, Endomysial AB igA. It was negative.

 

Our new doctor wants to run a stool test, from EnteroLab, we have not done that yet. He said its not a standard test - its sort of "alternative"..he is doctor of integrative medicine. It would show if DS has a sensitivity, which he can have without having celiacs disease.

[emmalily]

I showed no sensitivity to gluten in the test but don't eat it anyway because it seems to make me sick when I do.

Also, food intolerances besides gluten are something really important to consider if you're kids are having a lot of GI stuff going on. At the beginning of all of this I tested as intolerant to wheat, yeast, walnuts, brazil nuts, and mung beans, and I've also stopped eating strawberries, dairy, eggs, soy, and raw sugar because I seem to react to all of that (both GI and PANDAS-wise). Allergies/intolerances do make sense with PANDAS seeing as it's all about aggravating the immune system, right?

[nojo]

All of this crazy autoimmune stuff with dd led me to be diagnosed with celiac 6 weeks ago. I went to a GI doctor because I thought the stress of a chronically I'll child was getting to me. I had read about celiac how it is often mis-diagnosed as IBS. I asked for the test to rule it out since the diet is so hard, and I was positive. Both children have tested negative, but the difference in my body has been tremendous. I could see a big difference in only 3 days. I am still healing, but the daily headaches, bathroom problems, and crazy brain fog are gone. I'm getting off anti- depressants.

[butterflymom]

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Edited February 2, 2016 by tampicc

[Ozimum]

We've all gone gluten free and dairy free as part of a gut healing diet and feel loads better as a result. My 16 year old son didn't show up a sensitivity to gluten but he did to dairy. I understand that he cannot process casein, the milk protein, so we're really vigilant about that. (Works as an opioid...hence the fog!) We went to a DAN! doctor because I was so concerned about his immune sytem - he caught every cold going around and he was getting so much worse each time. That's when we learned he had strep in his gut. I had no idea that his occasional bouts of diarrhea/constipation were due to a leaky gut until then. I believe it's all connected.

[thereishope]

Makes sense to me. If things like seasonal allergies can take such a toll on some people with PANDAS, I would think any allergy/sensitivity can do the same.

 

Allergies/intolerances do make sense with PANDAS seeing as it's all about aggravating the immune system, right?

[thereishope]

Wow! Great to hear that it improved your quality of life to the point of being able to get off anti-depressants!

 

All of this crazy autoimmune stuff with dd led me to be diagnosed with celiac 6 weeks ago. I went to a GI doctor because I thought the stress of a chronically I'll child was getting to me. I had read about celiac how it is often mis-diagnosed as IBS. I asked for the test to rule it out since the diet is so hard, and I was positive. Both children have tested negative, but the difference in my body has been tremendous. I could see a big difference in only 3 days. I am still healing, but the daily headaches, bathroom problems, and crazy brain fog are gone. I'm getting off anti- depressants.

[peglem]

We did gluten free for 4 years and imagined (I think) some improvements just because we wanted to see it so badly. When we discovered PANDAS we added the gluten back in and saw no difference.

[GraceUnderPressure]

We did IgG testing (ELISA) and it came up positive. I checked on the poll that we saw some improvement of his PANDAS symptoms, but actually what we noticed was that when we eat good, healthy food from scratch, & then splurge & eat junk food, it exacerbates ds18's symptoms (esp pizza, which is hard because we are pizzaholics). So it wasn't so much that gfcf made him better as it was that it didn't add on to his problem (took an additional burden off of his immune system).

 

Lately, since ds's symptoms have gotten so bad, we no longer notice a difference.

I'm afraid that means that his immune issues have gotten so bad that it's now less than a drop in the bucket.

Edited November 24, 2010 by GraceUnderPressure

[matis_mom]

All of this crazy autoimmune stuff with dd led me to be diagnosed with celiac 6 weeks ago. I went to a GI doctor because I thought the stress of a chronically I'll child was getting to me. I had read about celiac how it is often mis-diagnosed as IBS. I asked for the test to rule it out since the diet is so hard, and I was positive. Both children have tested negative, but the difference in my body has been tremendous. I could see a big difference in only 3 days. I am still healing, but the daily headaches, bathroom problems, and crazy brain fog are gone. I'm getting off anti- depressants.

Wow Nojo! Good for you! It's amazing how trying to get our kids better so many parents here are figuring out our own health issues. Glad you got such a definite answer to your ailments!

[smartyjones]

ds, 6, has been gf/cf/egg free for almost 2 years. when pandas hit, one of the places we sought help was a naturopathic dr. she ran a blood IGG test. he was highly reactive (off the chart) for around 15 foods. we immediately changed them. we didn't test for celiac b/c he went off gluten b/f we could.

 

after about a week w/o, i realized previously he had been refusing milk -- i kept putting his glass in the fridge and later dumping it. he said "i don't want to eat anything i'm allergic to" i think at that time, there was something that was troublesome and he felt a difference. we saw no remarkable changes digestively or behaviorally.

 

he has had exacerbations and good times while eating this restricted diet. i keep him on it b/c i think every little bit to heal or at least not overload his immune system will help. but i do not believe for us, we see any difference in behaivor due to the diet.