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Furthing Testing


beach

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beach Newbie

My sister has celiac and my question is this. For the past month I have had nausa and lose stools and a very rumbling stomach, especially first thing in the morning. I also have a lot of acid reflux, nervousness and dizziness (although the dizziness may be from the fluid my doctor said is in my left ear). I also have occassional night sweats and I can't sleep at night. I've also lost my appetite and have lost 7 pounds in the last month. (my doctor said it's just from not eating) He did blood work, although I have not heard back with the results, he said he would run the test for celiac as well. However, because I haven't been eating much I'm afraid the test will come back negative. If it does, should I pursue further testing? My doctor seems to think all my symptoms are related to anxiety. I know my chances of having celiac are only 10% but I'm curious. THANKS!


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lovegrov Collaborator

Top celiac rexperts and the NIH say ALL first-degree relatives should be tested. My whole family did this and my dad, with no symptoms, was positive on everything.

richard

SherriRoy Newbie

Anxiety might be the cause, but it doesn't hurt to check out celiac. I got celiac disease from my mothers half brother...so even though he's distant it is totally possible. Since it is your sister...the blood test is a good idea. I turned out half positive and half negative to the test...so they weren't initially sure if I had celiac, but with the biopsy it did show damage.

You do have a lot of symptoms that I have with celiac disease..and I even have IBS. So all aspects are worth checking out. Once you start feeling better, that might help with the sleeping problems.

Hope this helps,

Sherri

plantime Contributor

Since your sister has it, you should definitely get tested. My sister is taking my biopsy results to her doc and asking for the tests, since celiac is genetic. Your symptoms could be anxiety, which seems to be the diagnosis of choice these days, but they could also be celiac. I went to my doc about a severe headache that originated in my right ear, she said it was anxiety. Two doctors and three rounds of progressively stronger antibiotics later, the deep ear infection finally cleared up and the headache went away. Anxiety is not the cause of everything that ails us!

Carriefaith Enthusiast

You should ask your doctor to get tested for celiac, since your sister has it and because you have a lot of the symptoms. It may be just anxiety but it's better to know for sure.

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    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
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