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Suspecting Celiac Disease

KLH36

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KLH36 Newbie
KLH36
Posted

I am 36 yes old and I have severe stomach problems, daily headaches, some mild joint pain,and what I think is psoriasis on my head and nose. My aunt has been tested and has Celiac's. I have diarrhea almost daily, bloating, horrible painful gas, nausea,and heartburn. Also, every few months I have severe abdominal pain lasting about an hr but I am curled in a ball for that hr. I take a lot of pepto. My headaches have been diagnosed as migraines but meds don't help. I have a history of anxiety and depression and right now I'm dealing w some slight memory loss or maybe just brain fog. How much is testing? I'm miserable most days but I'm not letting it affect my life. In need of advice.

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KLH36 Newbie
KLH36
Posted
  • Author

I have also had an elevated platelet count for the past year and a half.

nvsmom Community Regular
nvsmom
Posted

I'm afraid I have no idea what testing costs, but I can tell you which tests to look into, which I really think you should - your symptoms are the same as mine were.  :(

 

Make sure you are eating gluten (1-2 slices of bread per day) in the 8-12 weeks prior to blood tests, and 4-8 weeks prior to the biopsy.

 

The tests:

  • tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
  • DGP IgA and DGP IgG (deaminated gliadin peptides) - newer test, good at detecting early celiac disease
  • EMA IgA (endomysial antibody) - similar to the tTG IgA but tends to detect more advanced disease
  • total serum IgA (a control test)
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests
  • endoscopic biopsy (6+ samples taken)
  • skin biopsy - if there is a dermatitis herpetiformis rash - taken from beside an active rash
  • DQ2 and or DQ8 genetic tests - these won't tell you if you have celiac disease, but will let you know if you are in the higher risk portion of the population

Good luck!

KLH36 Newbie
KLH36
Posted
  • Author

Thank you so much for the information. I suppose I should start eating bread more often for awhile.

nvsmom Community Regular
nvsmom
Posted

If you can stomach it, it will help make the tests more reliable.  Those blood tests can miss up to a quarter of all celiacs (the old AGA tests miss even more) so it is wise to make sure you are not gluten light before the test.  Good luck.

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    • kpf
      ttg iga high (646 mg/dl) other results are normal

      By kpf · Posted

      I think you may be correct. The way the results are printed makes it appear as though it’s the ttg iga but I think you’re right—the 646 is total iga. So this would be indicative of another issue (another autoimmune condition, infection, cancer, etc.) and my doctor would need to do further testing. Thank you for saying this! 
    • RMJ
      ttg iga high (646 mg/dl) other results are normal

      By RMJ · Posted

      Are you sure that is the TTG IgA? Based on the units (mg/dL) and having an upper limit to the normal range, it looks like a total IgA result. 
    • kpf
      Vegetarians and vegans with celiac disease

      By kpf · Posted

      I am wondering if there are any vegetarians or vegans on this forum. I’ve been vegan for 15+ years and am just finding out I likely have celiac disease (blood panel done, need biopsy). My favorite foods—outside of vegetables, fruits, nuts, seeds—I will likely have to give up. Anyone else? 
    • trents
      Fiber Supplement

      By trents · Posted

      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
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