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Going Into My First Gi Doctor. What Should I Know Before Seeing Him?


KnightRobby

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KnightRobby Enthusiast

Hello again everyone.

I am going into my first GI Doctor. I was diagnosed with Celiac by my Allergist. Well, I am wanting to go in prepared and to really make sure all tests are done quickly - the reason being I am seeing a Pain Management Doctor, a Cardivascular Doctor, a Neuromuscular Dentist, and of course the GI Doctor. These appointments eat up a lot of time. I know there is no way to rush doctors (wish there was - haha) into running tests, but I'd like to make sure he doesn't accidentally skip a test (it's happened to me before). These doctors are very busy, of course.

Does anyone know all of the tests I should have taken for Celiac? I've heard about bone tests (density I believe?) but I've heard about many other possible tests. I did find out I am low on my Vitamin D.

If someone could list out the tests I need to get proper treatment, I'd greatly appreciate it. :)

Thanks again,

Robby


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gatita Enthusiast

Sorry I don't have an answer but I am hoping to see a GI doc soon too... so I'm looking forward to seeing the answers here.

nvsmom Community Regular

I'm not great with remembering all the tests but I do remember these:

  • calcium
  • B12 (many B's can be affected)
  • K
  • ferritin (iron)
  • D (you did this one right?)
  • Thyroid testing - Most doctors just run a TSH but with Hashimoto's the TSH can be in the normal range (mine was and they missed it for about 15years). Request a TPO Ab, Free T4, and Free T3, along with the TSH.

I don't know how the bone testing is done. I'm sure others will chime in here and add better advice. :)

Good luck.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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