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Sick And Suspicious


MartyrMom2

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MartyrMom2 Rookie

Hey everyone! I am glad to have stumbled onto this site! I really appreciate the wealth of information and the sense of community here. I am a newbie and have posted under a few different topics already. I hope to not repeat myself, but I wanted to share my personal history to see if any of you think my symptoms/diagnoses (please see my signature or other posts) warrant testing for Celiac Disease or not. I am a 34-year-old female, but my health started to deteriorate 7 years ago. In late Sept.'05, I developed what I thought at the time was a stomach virus. I had pretty intense abdominal pain that radiated to my back and diarrhea. I purchased some Imodium and went about my day. My symptoms lasted throughout the day, only to stop the next, and then return again. My symptoms continued so I consulted a gastroenterologist. In Jan. '06, I had an endoscopy and colonoscopy. I was diagnosed with IBS. I left the office with a pamphlet and a RX for Hyoscyamine. My abdominal pain and diarrhea continued for the next seven years (until present day). I finally discontinued the Hyoscyamine in Aug. '07 due to its ineffectiveness. I might as well have taken a placebo. I was diagnosed w/ hypothyroidism in Oct. '08 and put on Synthroid. While I am thankful to have had an astute physician recommend testing my thyroid (I know some women aren't as lucky), I am frustrated that I do not know the cause of my thyroid disease or my IBS. I am curious to know if it is Hashimoto's or not and furthermore whether gluten is the culprit. I have developed additional symptoms over the years, namely unidentified rashes, unexplained bruising, acid reflux, and lactose intolerance. I am slightly overweight and experience constipation as well, but my view is that w/ having an underactive thyroid, these symptoms don't negate Celiac Disease. My latest complaint is sciatica-type back pain. Let's just say my heating pad is my new best friend! What brought me to the suspicion of Celiac Disease or even gluten sensitivity again is that I picked up the latest issue of Woman's World magazine due to the headline grabber, "Sluggish Thyroid?" Inside it stated than an underactive thyroid might be due to an undiagnosed gluten or dairy sensitivity. I have two young daughters and I want to know if there's even the remote possibility that they have a chance to develop this disease. It wouldn't hurt to have some validation either. I know it seems like I've made up my mind, but after years of being treated like a neurotic nutcase, I suffer from self doubt. I would so appreciate any advice/suggestions any of you have to offer. Many thanks for taking the time to read my novel! :)


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shadowicewolf Proficient

It sounds like you might have it. Stay on gluten until all testing has been done, then go off it.

It is also genetic, there are two genes commonly found within 30% of the population that has been noted to be connected to celiac.

But, yes, with your issues, i would suggest going in and asking to have a full celiac panal done (which for the life of me i don't know off the top of my head) and then, should that turn out positive or inconclusive, go for the endoscopy. Regardless of its results, go try the diet.

I too had massive abdomen issues with my "D". It was random and got to the point where i'd have to take pepto bismol just to go out. Oh its just IBS the doctors said /sarcasm.

mushroom Proficient

Here's the full celiac panel of tests. Do be persistent in getting them all -- many doctors will only do the tTG IgA.

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide)
  • Total serum IgA

Get the testing done sooner rather than later - your PCP can order it. The sooner you know the sooner you can start feeling better. Even if your results come back negative you should try going gluten free for at least 3-6 months. And do stay eating gluten until all testing is completed.

Let us know how it turns out. :)

MartyrMom2 Rookie

Thank you, ladies or gentleman?! :unsure: I think I will pursue getting the full panel of blood work this week! Be blessed! :D

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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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