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gnna

By gnna
in Coping with Celiac Disease

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gnna Newbie
gnna
Posted

I am very new to this forum, and i'm so relieved that there are people to talk with about this. I have felt pretty low about this, because it's an adjustment to maintain a strict diet. I'm going to be making all my foods now and follow an atkins style diet from the book called 'Wheat Belly.' My reactions are now so that if I have a tiny little drop of tocopherol (in a dressing) I react pretty badly, but I tested negative for celiac. Someone mentioned on this forum that I could have a false negative test for celiac, but I don't know. All I know is that if I eat stuff with gluten I have issues.

I just wanted to ask...does gluten senisitivity/celiac disease get worse with time? Did you have suspicions that you had issues with gluten, or felt like you had some kind of problem, before you were diagnosed? If you were diagnosed as a kid what were the symptoms? Are they coming up with new tests for celiac disease?

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tom Contributor
tom
Posted

...I just wanted to ask...does gluten senisitivity/celiac disease get worse with time?

...

While continuing to ingest gluten? 100% certainly yes, except I suppose in what's called "silent celiac" - I'd suspect their condition worsens as well, but they don't notice via symptoms.

Hi gnna,

I'm not sure what to make of the tocopheral issues. It's not generally a problem for celiacs as far as I know.

Hopefully someone w/ some experience w/ that will comment.

Re: new tests, there is research being done, but I haven't seen anything to indicate that any new testing is close to ready.

One promising route I've seen for testing would eliminate the need for a gluten challenge. Instead of loading up the patient & grabbing intestinal biopsies for examination, they'll take intestinal samples & feed THEM the gluten "ex-vivo", outside the body.

So . ..did you already have a negative celiac blood test?

It's true that the tests can give false negatives.

Making all your food yourself is a great approach while figuring out what's safe (any issues besides gluten & tocopherol?) & just for the peace of mind of KNOWING exactly what you're eating, compared to eating out & having to presume.

Best of luck going forward. Are you reading other threads?

The Search Box at the top will search just this forum, e.g. Open Original Shared Link

Tom

kareng Grand Master
kareng
Posted

From your post yesterday - I would think it was the soy sauce in the dressing or cc of the salad someone else made.

Look for the obvious gluten sources first. I think I said that yesterday? :(

gnna Newbie
gnna
Posted
  • Author

Tocopherols are made from wheat germ or soy, it's a kind of preservative.

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