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What's My First Step?


Fettucini

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Fettucini Newbie

Does anyone know where I can be tested? I have low income, and no insurance.

What level of testing (if any) would be appropriate for me given my symptoms:

- difficulty focusing, forgetfulness

- headache

- diahrea, loose stools

- depression/fatigue

- feeling a need for nurishment, even when full

Also, I am thin despite eating plenty.

I have been unable to clearly establish a link between eating wheat and my

symptons. If there is a link, there seems to be a delay of three days to a week.

This delay (and perhaps lack of mental clarity) makes it difficult for me to know

whether of not I am imagining the connection. I do not have any obvious

increase in symptoms on the same day I eat wheat, even in large quantities.

My understanding is that the response time to wheat among people with celiac

disease varies. Is three days to a week typical?

After avoiding wheat for a couple months, I noticed improvement, but this could

be due to a variety of unrelated causes. Casein or lactose intolerance may be

another suspect because I was severely allergic to milk as an infant.

I am starting a spreadsheet to track diet and symptoms over time. This should

be useful in any case.


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Fettucini Newbie

BTW, I am in the Santa Cruz, California area. Any thoughts about how

I can find a good clinic that can to celiac screening?

celiac3270 Collaborator

I know what everyone else will recommend so I may as well say it now: Open Original Shared Link. You get advice on what tests to take (and they're supposed to be more inexpensive)....you have choices on how many and which you choose to take. Someone else can give you more info. I haven't taken any tests there, but many others have.

-celiac3270

tarnalberry Community Regular

If you're trying to do a dietary challenge for gluten intolerance, don't forget that just cutting out wheat is not enough. You have to cut out anything that has or is made from wheat, barley, rye, and oats. Have you gone over the safe/unsafe list on this site?

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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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