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What Am I Missing?

angelynnb

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angelynnb Newbie
angelynnb
Posted

Okay, after doing an elimination diet in April, I realized gluten was really affecting my life. Depression, anxiety, fatigue, rashes, weight loss, and stomach cramps.... These all disappeared after 7 days eating gluten free. I re-introduced gluten for about 2 months, and realized it was seriously affecting my life and my brain. I stopped eating gluten again for 2 weeks and I was healed again....

Went to the PCP and he told me he believed I was gluten intolerant. He ran 2 tests for blood work and results came back negative. He told me to continue on a gluten free diet and be happy!

My aunt had gone through testing through a naturopath to get all intolerances named. The woman who did it said it was electromagnetic testing to test for allergies. I did the testing and got my oldest daughter (5)tested and I came back gluten intolerant and my daughter is gluten and dairy intolerant.

My question is: what am I missing? Does it matter if we are Celiac or G intolerant? We've adapted and are living free of gluten and dairy for her, but I keep getting this feeling that it isn't enough to not be sure if we are Celiac.

How do I go about this with my daughter's pediatrician? Will they believe me since it was non-conventional testing?

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shadowicewolf Proficient
shadowicewolf
Posted

I've heard that the reaction to gluten between NCGI and Celiac is the same except for the no intestine damage.

You could at this point ask for the genetic testing to be done. It isn't enough for a dx of course, but it could help point in the right direction.

IrishHeart Veteran
IrishHeart
Posted

When you had testing, you were gluten free.

Since testing is based on gluten antibodies present in the body, there is no way

you can get accurate testing while you are OFF gluten.

You may wish to read about valid and invalid testing for "food intolerances" and food allergies.

There are tests for wheat , dairy and other food allergies, but there are no valid tests right now for gluten sensitivity. And technically, there is no such thing as a "gluten allergy".

Celiac disease is not an allergy. It is an autoimmune disease.

....and there is NO validity to "electromagnetic testing" at all. Sorry.

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angelynnb Newbie
angelynnb
Posted
  • Author

When you had testing, you were gluten free.

Since testing is based on gluten antibodies present in the body, there is no way

you can get accurate testing while you are OFF gluten.

You may wish to read about valid and invalid testing for "food intolerances" and food allergies.

There are tests for wheat , dairy and other food allergies, but there are no valid tests right now for gluten sensitivity. And technically, there is no such thing as a "gluten allergy".

Celiac disease is not an allergy. It is an autoimmune disease.

....and there is NO validity to "electromagnetic testing" at all. Sorry.

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So, since I know gluten is the culprit, is it important to find out if I or my daughter are celiac?

What are the next steps for my five year old? What are the benefits of a diagnosis for her?

shadowicewolf Proficient
shadowicewolf
Posted

If you are in the U.S., school accomodations. Under the ADA (americans with disabilities act), celiac is covered and the school would have to accomodate. For example, if she were to have a gluten incident and be forced to stay home for a week, they would have to accomodate that. Likewise with anything gluteny in the classroom or whatnot.

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