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Glutinized - Duration Of Symptoms?


MisterV

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MisterV Rookie

I've been searching for anwswers on this forum, but haven't quite found out what I'm looking for.

I've been gluten-free for 3 years. I went off gluten before being tested so I don't know if I am Celiac or non-celiac gluten intolerant.

2 weeks ago I unknowingly had a big dose of gluten hidden in some food...the usual symptoms GI, muscle pains, happened the next day. The usual anxiety attack happened 2 days later, but this time my tongue feels swollen, my speech is slightly impaired. I thought it was probably the gluten, but the tongue sensation has been fluctuating up and down without quite going away for about 5 days. I've been poking and prodding so much in the soft tissue under my skin that now I don't know if I'm sore from prodding or if my salivary glands are painful and inflamed.

If anyone has had slurred speech or a fullness in the tongue from a gluten reaction...can anyone reassure me that the symptom will fade eventually?

The problem is the anxiety aggravates my thoughts about what it is and of course I think it's a series of hundreds of other diseases.

 


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Fire Fairy Enthusiast

This is one I haven't had happen (yet). Once in High School the inside of my mouth swelled up but not my tongue. I was glutenated Tuesday morning and have suffered from various issues everyday since. The most worrysome reaction besides being depressed and suffering some senseless anxiety has been feeling like I have bubbles popping in my head. Strokes run on both sides of my Father's family and my mother had a stroke last fall so I'm a little paranoid about my brain. Afraid I'm no help, just sharing to bump your topic up.  

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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.
    • 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.
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