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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
      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
    • MicG
      Test results as follows: Deamidated Gliadin Abs, lgA 40 H (normal range 0-19) Deamidated Gliadin Abs, IgG 4 (0-19) t-Transglutaminase (tTG) IgA <2 (0-3) t-Transglutaminase (tTG) IgG <2 (0-5) Endomysial Antibody IgA Negative (Negative) Immunoglobulin A, Qn, Serum 535 H (87-352) Do I have celiac?
    • catnapt
      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood work comes back negative for the genes, then I will cancel the endoscopy. If positive, I will try the 2 week gluten challenge and get the endoscopy done. If I can't manage the gluten challenge (I had HORRIBLE symptoms last time and quit after 12 days) then we'll just assume it's celiac disease and go from there. She says she does a full nutrient panel on all her pts every year, that was nice to hear.I'm on so many supplements it would be nice to only have to get the ones I truly need! so yeh, really anxious about the test results for the genes!! I have an identical twin sister so I'd need to tell her if it's positive, she'd prob want to get tested too. *interesting note: when I said if the blood work comes back that I don't have the genes, then I'm in the clear - she said, well,,,,,,not necessarily. But she didn't want to go into as we had a lot to go over. I did make a  mental note of that comment and will ask her when I see her next time.   she was very thorough! I was impressed! she even checked- up on some lab work I had done that my Endo ordered. I like her, I am looking forward to seeing her again. I think I'll get some good advice and info from her she also complimented me on my diet.   said it was a very gut friendly and healthy diet 
    • Scott Adams
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    • Russ H
      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the gut lining normally recovers on a strict gluten-free diet, and this happens much faster in children than in adults.
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