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Mystery Diagosis


KarenCM

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KarenCM Rookie

I just wanted to let everyone know that a Celiac episode aired today I didn't get the chance to watch it but luckily it is repeating next week Sunday October 23 12noon channel DHC. Did anyone else watch it today?

Karen


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VydorScope Proficient

What show is this? Is it a drama or somthing? Never heard of "Mystery Diagosis"... what network carries it?

sb4480 Newbie

I watched it last night. The show is called "Mystery Diagnosis" and it's on the Discovery Health Channel. I think it was the first segment of the show. It told the story of a little boy who was really sick, he kept having seziures and they had no idea why. His mother had celiac disease but her doctors told her it was "rare" and not genetic so not to worry about her family. Well, low and behold, it turned out that his problem was in fact celiac disease but he had atypical symptoms. He had no GI problems at all.

I was so happy to see the subject being discussed. There was also discussion about the fact that celiac disease is not as rare as doctors used to think and should be considered regardless of symptoms if family members have it.

Stephanie

julie5914 Contributor

Yeah, the show usually covers people who go from doctor to doctor, knowing something is wrong but being unsatisfied with what doctors were telling them, essentially not knowing what was wrong. (Sound familiar?) They usually cover a few different people's stories (who have finallly found out what is wrong) in an hour episode. Last time we watched this, my husband said I should be on it - I am glad they are doing one on Celiac.

robbiesmom Rookie

I was thrilled to turn on this new show and discover they were talking about celiac! I taped the second showing so I could have documentation of this when we have to switch doctors or a second child has atypical symptoms. Anyone know when the House celiac episode is to be aired? I hope I didn't miss it!

CeliacMe Rookie

Me too! I was diagnosed with "IBS" 4 years ago and Celiac in July! You know, IBS isn't a diagnosis right? It's something the doctor says when he cant figure out you have diarrhea. LOL I hate doctors!

Yeah, the show usually covers people who go from doctor to doctor, knowing something is wrong but being unsatisfied with what doctors were telling them, essentially not knowing what was wrong. (Sound familiar?) They usually cover a few different people's stories (who have finallly found out what is wrong) in an hour episode. Last time we watched this, my husband said I should be on it - I am glad they are doing one on Celiac.

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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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