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Hives


DogWalkerNYC

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DogWalkerNYC Apprentice

Let me start by saying I've never had hives and, to the best of my knowledge, never had food allergies. I'll be 65 in October. Two years ago my dr diagnosed me with mild GERD and a daily Prilosec usually stopped the heartburn and night time vomiting, unless I ate too late or the wrong foods, etc. But basically the GERD was under control.

Then the bloating started after eating a buttered roll every night as I did computer work. I had never heard of gluten intolerance or Celiac Disease until the bloating scared me into doing some research. And then,the bloating, along with symptoms I've had since I was a child, began to make sense. I 'played' with a gluten-free diet, not wanting to see my dr yet, because I started to think the GERD diagnosis was wrong, and I decided to test myself and then discuss my reaction with my dr. Within a week 3 major symptoms, among them the bloating, STOPPED!!. Then I glutened myself again (not so much to test my theory but honestly because I fell off the wagon) and the symptoms started again.

For about a month I was a yo-yo dieter .. gluten free .. gluten .. gluten free, etc. In addition, I started ordering gluten free meals from restaurants, only to get mild reactions after eating them. Further talks with the restaurants uncovered the fact that there may be small amounts of gluten in sauces, etc. but they assured me they didn't add any gluten. Well, duh!! They just don't get it.

About a month ago the top of my right arm, from wrist to elbow (top only) became severely, ridiculously itchy and eventually broke out in hives. I don't believe it's DH because the little bumps swell to inch round, ridiculously itchy hive like things. No liquid comes out of the welts. Also, the skin on my arms changes and looks very leathery. Then this itchy condition spread to my left arm and two huge hives appeared on the back of my neck. The hives on the back of my neck eventually went away and I'm left with two extremely itchy arms (tops only) and the hives come and go.

I thought this might be related to my dog licking my arms, but I stopped him from doing that and the hives still come and go. So, although I don't know exactly what they are (DH, hives, or something else) I'm convinced they are yet another sign that 'gluten has entered the building'.

At this point I do not plan to go through the pain of eating gluten again just to be tested. I'm seeing my gastroenterologist next month for a yearly check up. I have pictures of the hive like things, lists of my symptoms and when they stopped and I'll discuss a plan of action going forward.

I am very grateful to be responding to a gluten-free diet, and I'm very grateful to have delicious gluten-free food, certified gluten-free bread, rolls, coconut milk desserts that are mouth watering and fill all my cravings (company is called 'So Delicious' and it's dairy free, cultured coconut milk. The raspberry is truly incredible).

No more eating out for awhile. If I have to for business I'll have fresh fruit or veggie salads. I have a big reunion coming up next week. As hard as it will be to avoid the foods everyone else will be eating, the thought of the pain, the intestinal damage and those huge, red, itchy disgusting hives will get me through it.

Sorry for the long post and thanks for the support.


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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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