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To those who have gone wheat-free/gluten free


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Our naturopath wants my son to try going wheat-free for 6 weeks. I have opposed our naturopath so far because the thought of it set off OCD in my son as he has OCD related to food. I was wondering if those who have gone wheat-free tested positive for a wheat allergy. Also was wondering what your child's symptoms of a wheat allergy were as my son's ONLY symptom is severe OCD. He has no stomach pain at all, even after a year of antibiotics. His overall health is excellent. Also, did going wheat-free help a little or a lot.

 

A have the same questions for those who have gone gluten-free. Thank you. I appreciate everyone's comments so much.

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You must clarify if you're going wheat and/or gluten free (Two different things)! You can have an allergy to wheat, which will show up on skin and igE blood tests. For gluten, you need an IgA (gliaden) blood test, if positive, more screening tests for celiac then definitive diagnosis can only be done by intestinal biopsy. Ruling out celiac (gluten) should be done first and while eating gluten (makes it a lot easier). Having said all that, my son tested pos for IgA, but neg via biopsy, but showed great improvement in symptoms after withdrawing gluten!! I myself feel ALOT better off gluten even though I'm neg for celiac via biopsy. You're getting into the realm of "unsubstantiated" "not enough research" world of gluten sensitivity, in which many people feel great off gluten, reason unknown - hence the explosion in gluten-free foods and restaurant menues with GF choices. The good news - finally the mainstream GI Drs are finally taking note and more research is being done to investigate this "no mans land" of gluten sensitivity! BTW, my son's initial improvement began to wear off and we had to add gluten back in after a year due to underweight, but it's worth a try.

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Kiara -- thank you -- What lab did you use for testing. I am considering the Metametrix IgE food antibodies 30 and Metametrix IgG4 food antibodies 90. My son already tested negative on the gliaden test through Quest. And he had the Metametrix complete stool profile done which showed no signs of gluten sensitivity.

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We just used our local generic lab here, probably quest (it was a few years ago) so if the gliadin is neg, more than likely not celiac (which is good) but you still may see benefits going gluten-free.I'm not familiar with the metametrix testing?? My ds did IgE blood tests for allergies and skin pricks which both showed he's "allergic" to everything, seriously, every major food group - corn, wheat, rice, soy etc but he's never had a true allergic reaction to anything! Can't explain, and obviously can't avoid all those foods, tried, but he lost too much weight!

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I understand that allergies and sensitivity are different. DS17 does not have allergies, but tested moderately sensitive to milk, but not to wheat. Stool testing also found overgrowths of strep etc in his gut (we had no idea!), so we decided to go GF/CF/low grains/no potato/low sugar in order to reduce inflammation in his gut. I understand that casein stays in the gut for a few days, while gluten stays in the gut for a couple of months. We decided to try the diet seriously for 3 months and see what happened. DS responded very well, even 12 months later he continues to show improvement. OCD continues to peel away. He says he feels better and can concentrate and focus and he’s so-o-o much happier. And my skinny teenager has actually put on weight – yes! on that diet! (I believe it’s because he is now absorbing his food better than previously.) I try to think in terms of what he can eat rather than what he can’t. And there are lots of gluten free foods available now.

 

We also discovered DS had a high pain threshold, probably because gluten and casein were broken down incompletely to opioid peptides. It also meant that he was unaware of ear infections!(aarrgghhh!)

 

A mum of an ADHD/Aspie kiddie told me today that having embarked on a similar diet (after Sue Dengate) only a couple of months ago, she now believes her ds would no longer qualify for the ADHD diagnosis, and possibly the Aspie one as well. (He does not have PANDAS.) She now brings to three the number of mums I know who believe diet has helped with ADHD. I certainly think it’s helped my PANDAS/Aspie. (I find it very difficult to separate the two – the diagnosis of both came one on top of the other last year.)

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We looked into going GF/CF about 6 months ago. I was in the mind frame of "anything that can help - we'll try". I spoke to our pediatrician about it first (who is very open-minded, forward thinking, PANDAS friendly). He said a few of the things mentioned here - basically that there isn't really enough research demonstrating the impacts of that on behavior disorders, but from his experience, it has worked wonders for some families - and not at all in others. Normally, he wouldn't object to a family trying it if they so choose, because unless the child starts losing weight, there's really no harm (as long as they're getting all of the critical vitamins and minerals elsewhere).

 

In our particular case, however, he strongly advised us against it. My son is underweight (as of Tuesday, in the 7th %-tile for BMI), and a majority of his OCD revolves around food. He goes days at a time without eating very much at all. He gets obsessive about certain foods - and sometimes will go days only eating one specific food and nothing else. Our doctor thought in his case, changing his diet and might make the OCD worse, especialy eliminating some of his favorites that he will regularly eat (thinking about donuts here!) and with him being underwieght, he just didn't think it would be worth it at this point.

 

So we haven't tried it yet. Maybe after his T&A if his symptoms start to clear more we will, but right now, it just wasn't for us.

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Hi- we are also interested in the food connection with ocd.

 

My son, now 8, first reacted to eating scones, whip cream and strawberries at 4. It took 10 minutes and then he had frequent urination for the next 6 weeks. Tried all the tests-infection etc all negative. Allergist and GP had never seen this reaction.

 

We took him off the above-wheat, sugar, dairy and straw. He started to improve immediately but 6 weeks to be back to norm. We tested again at his birthday and then a month after that with grandparents visiting. Both times frequent urination returned but easy to turn around because we new what to take out.

 

Then 9 months ago- food reaction again(eating friends lunches/birthdays). But in hind site also develop obsessive thinking-falling to sleep at night. Anyway, we did not know the connection with the diet and this. Then 2 months ago full ocd. Wow! This has been hard work. I tried to educate myself and read everything I could find-seeing pyschologist etc. But it was only last weekend when a pyschologist helped me make the connection with ocd and diet. She mentioned that kids with PANDAS have frequest urination-his primary symptom. This has led me to James Greenblat work(psychiatrist in boston area). He seems to be one of the only Doctors working on this connection.

 

With such relief have I found this. So far we have take out wheat. Dairy will be out today. I am also figuring out protocols. These seem to be very similar to what autistic kids need. +++good fats(we are using egg yolk in almond milk smoothies) fish oils, gut healing, we started inositol(read james greenblat work). With the little we have been able to do in 2 days we have a dramatic change with ocd. From 5-20 questions in a minute at times to 5 in an evening. He even noticed himself by saying "mom, when I think that is a very good question I am asking you because when I ask that question I do not have to ask anymore"! I am now trying to figure out recipes and what will be for breakfast and lunch etc. My kids are picky but my first batch of almond milk(soaked org raw almonds & cashew, blended with water & dates, & vanilla) past their test on oatmeal this am.

 

We really want to reach out to parents because this is devasting, confusing, impossibly challenging(OCD) etc. The kids suffer in on so many levels and it just does not make sense. We are at the beginning of the road but to find the right resources I have begun to breath a sigh of relief and connnect the dots.

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I'm very interested in the food connection as well. It just makes sense from an intuitive sense that certain foods would make our kids better and certain foods would make them worse.

 

We had blood work completed to test our son's allergies and it came back ok for wheat and dairy- but huge issues with peanuts, soy, shellfish and beef. Lately I've been thinking I need to find another allergist- someone that uses Dr. Doris Rapp's protocol- to do some further testing. Our son has been GFCF for 4.5 years and when we first went dairy free we definitely noticed a HUGE difference. Not so much with wheat- but when he got a hold of dairy or cheese the behavior was not pretty- like ADHD multiplied by about 10.

 

I'm really fascinated by the possible food connections.

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Just following up my earlier post. The change that led my child into the ocd(instead of just the physical symptoms of frequest urination) might have been that at this same time he had his first ever antibiotics. I've always thought my kids were a bit at risk so have avoided when I can vaccinations and antibiotics and tried to do other things. In this case he had a gum abcess. It was painful and I did not see any way around doing the course. So that is just when we got into the ocd symptoms.

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We also went to allergist and other types of testing to determine what foods were causing problems(4 years and then again 5 months ago). We were given a list of foods and went for this for a week or 2. The results were terrible! My child got way worse. We have been through that twice. So I have not found the allergy testing to help us. Finally I had to get back to what I had seen with his one discreet reaction(wheat, dairy, sugar, staws). We had taken those foods out and he got better. We were slowly able to introduce them back over the years. We found his reactions would happen when he had a cold or virus-low immunity. So it was a combination of things.

 

We have just gotten into new territory I think since the antibiotics. So maybe we have to work to heal his gut(which we are starting with some special supplements).

 

It is hard to chose to change the diet-especially when the whole family is just barely managing. As much as anything moms seem to need to trust what they are seeing. But also to get support from the professionals who are actually turning these serious situations around for kids and families - basically removing dairy & wheat(sugar) and then extra support-nutrition etc.

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