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Tired Of Playing Games - Finally Gone Gluten Free


leadmeastray88

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leadmeastray88 Contributor

A few weeks ago I had some testing done to check for parasites, as my surgeon said he'd like to rule that out before we talk scopes. I thought that was fair, so I did the testing. I got my results yesterday - they were negative for parasites.

I was relieved and was looking forward to talking scopes, when he told me "I think you have IBS. You're too young for me to be sticking telescopes in you. Plus, you've been through enough already this past year." He wrote me a prescription and told me to come back in a month.

I pretty much left there in tears. I know you'll all say I should have spoken up and demanded a scope. However, we have been very close over the past year because he cured my hernia problems that were caused bya birth defect which was ruining my life. I have so much respect for this guy, it's not even funny. But I'm sick of waiting, I'm sick of being sick. A month is a long time, I'm sure most of you can relate.

When I got home I talked to my mom, who was also shocked that he didn't suggest more testing for gastro issues or food intolerances etc etc. My mom said I should try the gluten free diet anyway. My grandma was also there and she argued that I should just take the pills and see him in a month. My grandma also said "well if the pills help then problem solved!" All I was thinking was 'No..problem not solved. I'd be on pills for the rest of my life - I'm 19!' I couldn't believe how emotional I was getting over this. I think it's more frustration than anything.

So today is my first day gluten free.

I kind of wanted a diagnosis for the same reason anyone does - just to have peace of mind, to know it's not all going to be for nothing, to make everyone else around you take it seriously... but I've realized that its really only me who needs to take it seriously, not everyone else. Maybe I'll give Enterolab a try.

I just wanted to thank all the people here (and I'm sure they know who they are) who have helped me cope with this and have been so encouraging not only to me but to everyone here. :)

Kim


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ShayFL Enthusiast

Im rooting for you!!

YoloGx Rookie

Good luck! Even if you don't clinically have celiac you could be gluten intolerant. So going without for a month is a good plan. I'd keep your doc informed since he seems to care about you.

Bea

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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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