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Do Symptoms Get Worse?


JustAGirl79

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JustAGirl79 Apprentice

I was diagnosed in mid-April with celiac, based on blood tests, though my IgA was a 3 (which I've been told is negative for celiac), my tTg was 200 (which I've been told is positive).

Leading up to the diagnosis, I was suffering from what the doctor thought was IBS. It wasn't unbearable, but I definitely got the sense that something wasn't right with my digestive system, which is why I pushed for blood work, etc.

I've largely been gluten-free since my diagnosis (a couple slip-ups, here and there) and generally have felt better - though not 100%. Now, it looks like I'm going to have the endoscopy and biopsy done, likely within the next 2 months, so I'm back on gluten for the time being. I'm trying not to overdo it and I don't think I am, but I felt rotten all weekend. I don't remember feeling this rotten when it was "just" IBS.

Is what I'm going through simply psychosomatic now that I know I have celiac or are my symptoms progressing/getting worse?


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MySuicidalTurtle Enthusiast

All I know is that if I accidently eat gluten, it is way worse than it ever was before diagnosis. Probably because we heal and then destroy all that.

ravenwoodglass Mentor

What you are experiencing is common and an excellent indication that you do have an issue with gluten. Your body has been very relieved to not be getting what to you is a toxin. You have now added that toxin back into your diet and your body is telling you that it does not like it at all. Unfortunately if you want to a doctor derived diagnois you will need to keep poisoning yourself until the biopsy is done. One thing I would suggest is that you let your doctor know what your reaction to the gluten challenge has brought about. In some cases if the reaction is severe enough a doctor will stop the challenge and diagnose based on the severity of the reaction.

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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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      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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