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Am I Being Glutened Or Is This Something Else?


HS7474

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HS7474 Apprentice

I've been struggling with gluten-esque symtpoms for quite awhile and have just accepted them. I eat gluten free and I'm pretty careful so I'm not sure what the problem is. However, I was finally able to notice that I have symptoms after drinking 4C Totally Light 2 Go energy drink packets. I've looked thorugh the ingredients, however, and can't seem to locate anything with gluten. I thought perhaps the sucralose was the problem, but I drink Swiss Miss Diet Cocoa with Splenda without issues. Does anyone have any ideas? I'll post the ingredients for the water packets below. Thank you so much!

Ingredients

Berry Ingredients: Citric Acid, Taurine, Glucuronolactone, Sodium Bicarbonate, Sodium Citrate, Caffeine, Acesulfame Potassium, Natural (Mixed) Berry Flavors, Sucralose (Splenda Brand), Niacinamide (B3), Calcium Pantothenate (B5), Pyridoxine HCl (B6), Silicon Dioxide, FD&C Red 40 & Blue 1, Folic Acid (B9), Cyanocobalamine (B12).

Citrus: Citric Acid, Taurine, Glucuronolactone, Sodium Bicarbonate, Sodium Citrate, Caffeine, Natural Citrus Flavors, Acesulfame Potassium, Sucralose (Splenda Brand), Niacinamide (B3), Calcium Pantothenate (B5), Pyridoxine HCl (B6), Silicon Dioxide, FD&C Yellow 5, Folic Acid (B9), Cyanocobalamin (B12).

Orange: Citric Acid, Taurine, Glucuronolactone, Sodium Bicarbonate, Sodium Citrate, Natural Orange Flavor, Caffeine, Acesulfame Potassium Sucralose (Splenda Brand), Niacinamide (B3), Silicon Dioxide, Calcium Pantothenate (B5), FD&C Yellow 5, Pyridoxine HCl (B6), FD&C Red 40, Folic Acid (B9), Cyanocobalamine (B12).


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mbrookes Community Regular

I am kind of wary of anything that has that many chemical ingredients. I don't know what half of them are. I try to limit myself to foods that I can actually pronounce.

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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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