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Could It Be Something Else?


#1mommy

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#1mommy Newbie

I have been gluten free for 6 months now with no results and actually my BM's have gotten worse like undigested food. I still have stomach pain all the time. Something strang happened the other day I ate a meal and felt great. I was the first time in months that I was not running to the bathroom after eating. To my supprise I read the lable and wheat was one of the top ingredants.This was probable one of the only times I did not read first. I was told by a woman that has celiacs that I could have a corn alergy instead. I was diagnosed by blood test and biopsy. The lab that did the blood test had to look it up to see what the needed and said they had not ran that test before. Could they have done the test wrong? I don't understand why there was so much difference.


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CarlaB Enthusiast

If you were diagnosed with a positive biopsy, you have it!!! Sometimes celiacs have a delayed reaction to glutening and sometimes they become more hypersensitive with a small amount. It's like when you're getting a lot of gluten, your body can't do anything about it, but when you get a small amount, the body wants to eliminate it immediately!

My first guess is that you're getting hidden gluten from somewhere.

My second guess is that you need to cut out dairy until you're healed.

Flor Apprentice

Are you eating soy?

ravenwoodglass Mentor

In addition to the other great advice have you eliminated non food sources of gluten? Things like shampoos and toiletries, gluten in hobby or craft items like paints, clays and glues, remodeling stuff like drywall and compound or wallpaper paste? Sometimes as we heal we become more sensitive to hidden gluten aroung us. I kept making myself sick with a shared can opener and pet food, took me over 2 years to figure that out. I hope you get some relief soon but as another poster said with both bloodwork and biopsy positive there is no doubt you are not handling gluten. You also may want to have the blood tests run again, since you did show positive they will be a good indicator of how gluten free you have been.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      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.
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      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/ 
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      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. 
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