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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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    • trents
      EMA Result

      By trents · Posted

      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
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      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
    • Scott Adams
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      By Scott Adams · Posted

      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      Violent reaction to gluten after going gluten-free?

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      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      EMA Result

      By trents · Posted

      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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