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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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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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