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First Post-diagnosis Trip


FMcGee

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FMcGee Explorer

Hi! I've only been gluten-free since Saturday, and tomorrow I leave for a beach trip in South Florida with my family, and I'm terrified. I don't want gluten coming near me, of course (I think some snuck in yesterday somehow, and that's not helping me feel better), and I'm really worried about being able to enjoy myself when food is going to be a constant problem. It's further complicated in that I've never done well eating cheese, red meat, or really greasy food, so it's not like I can just order a steak. Besides, I'm paranoid about cross-contamination. Any advice for calming down but still managing to avoid gluten? I feel like this is the worst possible time for a trip, but it is what it is. I'm committed now. Any help would be extremely appreciated.

Thanks!


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MySuicidalTurtle Enthusiast

Hello! If you are really scared, you could always stock up on some items to take with you or buy there. Then, you could eat in your room and when everyone goes out to eat just join in for the fun and conversation. You could also try to just do a plain baked potato and salad, etc. It will be hard and frustrating but you can do it! Good luck and have fun!

munchkinette Collaborator

I travel quite a bit. I take a lot of food with me, and I search on the internet for good places to dine and shop before I leave. A burger patty without the bun is something that I get all the time when I travel.

I know this sounds bad, but if you just went gluten free, would you really notice trace amounts of gluten? I was making a lot of mistakes with my diet in the beginning, and I didn't even notice. If I made those mistakes now, I'd be really sick because I don't have a tolerance built up. I guess what I'm saying is, enjoy your vacation and don't stress too much, because chances are, you'll make some mistakes in the beginning anyway.

FMcGee Explorer

Thanks to both of you! I took all the above advice - to stock up on food, look up restaurants ahead of time, and not to stress too much - and had a good time. I did get sick from food once, but not because of the gluten - it was just bad food! I appreciate your responses!

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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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