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How Do You Know How Much Gluten To Avoid?
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4 posts in this topic

My neurologist recently told me I have celiac disease because my IgA was 101 (normal range 0-18). I have not had any meals with gluten since 5/21. Do I need to get rid of all my makeup, lotions, and shampoos? I went to a gastroenterologist yesterday and I am having a celiac panel test done to see if I have the celiac genes. The only differences I have noticed since going gluten-free are less post nasal drip and fewer headaches.

Thanks

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With some forms of celiac disease, the symptomatology is not gastrointestinal - the neurological symptoms are a good example - so you cannot measure your improvement on the diet in the same way as with GI symptoms. It makes it harder to judge whether you are still getting gluten because you don't have that immediate GI response. But in answer to your topic question, I believe you should rid yourself of all gluten possible. I have eliminated it from my toiletries, makeup and personal care products, just to be sure. When it all comes down to it. how much gluten sets you off is a very individual thing, but as far as diet is concerned, the goal should be to eat gluten free and keep gluten out of the house as much as possible. I don't know what other symptoms you have, but those with mainly neurological report that they take longer to resolve than the GI symptoms.

With GI symptoms some manage with products that are manufactured on shared lines with gluten products, some manage only with products that are made in the same facility as gluten products, and some need a dedicated gluten free facility to be safe. It is a matter of experimentation. As you get further into the diet you will get more of a feel for what is safe for you. :)

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Just to make sure you understand, because not all doctors are aware- you can have Celiac disease without necessarily having either of the two "celiac genes" it is not common, but there are a few people on this board who were dx despite being DQ2 and DQ8 negative. Your neurologist is one of the few who are on the ball in identifying celiac as the likely cause, so good for him!

As for avoiding gluten- it is debatable as to how far you need to take it, and everyones sensitivity varies. I use gluten free lotion and lipstick, because those are two products very likely to end up in my mouth. I don't worry about regular makeup or shampoo for myself, because I can keep it out of my mouth and I don't react to it. My antibodies are at zero.

My two celiac kids however are more sensitive. My sons antibodies are dropping, but still not zero, and he still has some tummy issues (though not bad) so I make sure his stuff is gluten free. Fortunately, many of the mainstream brands are anyway, and are not expensive.

My daughters antibodies are at zero, but she reacts to the teeniest amount of gluten with severe vomiting. Usually it is "mystery gluten" that we can't find the source for, so her stuff has to be gluten-free too.

Also be aware that while a gastroenterologist will perform an endoscopy with biopsy, celiac doesn't always show up. That doesn't mean you don't have it!

The real diagnosis is confirmed when you go gluten-free, your antibodies start dropping, and your symptoms start resolving! The last one can take a long time for some people, so don't get discouraged if you don't feel better right away!

Also, your doctor should NOT have told you to go gluten free before seeing the gastro! Common mistake. The gastro will want to do endoscopy to look for damaged villi, and if you stop eating gluten, even for a short time, the villi can heal. Depending on how much damage there is to begin with, that can mean unidentifiable celiac damage within just a few weeks! So go eat some gluten, pronto! And keep eating it until after your biopsy! Very very important!

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