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Celiac And Shingles (herpes Zoster)


hutmacar

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hutmacar Newbie

Hi,

I'd like to know if someone has falsely been diagnosed shingles (herpes zoster) instead of celiac. Is such a missdiagnosis common?


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Fiddle-Faddle Community Regular

With doctors today, anything is possible. (Sorry, I have developed a deep mistrust of our medical system in general, so maybe I'm not a good one to reply here.)

I do believe, though, that shingles seems to occur more often in celiacs than in the generally healthy population, maybe because our immune systems are hyper, I don't know. On the other hand, most dermatologists wouldn't recognize Dermatitis Herpeteformis if it jumped uip and bit them on the a**--and, having had both, I can say that in my case, they DID look very similar (except shingles hurt like you wouldn't believe).

Are you having trouble getting a solid diagnosis of a rash?

julie5914 Contributor

It's probably common. I never had the rash (DH), but I can imagine that a regular doctor would assume shingles. A biopsy can be done to confirm it is DH. Valtrex can help if it is shingles. I actually just got my first herpes simplex (cold sore) outbreak in the last couple of weeks and was so embarassed to have to take Valtrex. That rash on my lips was horrible though and kept getting worse, but the valtrex stopped it in its tracks.

mamaw Community Regular

This is so interesting My uncle who is 93 &1/2 just told me he has shingles but he didn't know it because it doesn't bother him at all, no itch or pain..... and I agree with Fiddle-Faddle most docs know squat about any of this. I don't have or ever had dh but I now wonder about my uncle.Plus what makes me wonder more is his great grandson has autism & possibly his great granddaughter has autism.His son had all kinds of stomach problems but won't listen to anything I say............

Okay someone help me make a dx please!!!!!!

mamaw

Fiddle-Faddle Community Regular
Okay someone help me make a dx please!!!!!!

mamaw

(Mr. Rogers' voice): Can you say, "Gluten Intolerance?"

Guest Robbin
This is so interesting My uncle who is 93 &1/2 just told me he has shingles but he didn't know it because it doesn't bother him at all, no itch or pain..... and I agree with Fiddle-Faddle most docs know squat about any of this. I don't have or ever had dh but I now wonder about my uncle.Plus what makes me wonder more is his great grandson has autism & possibly his great granddaughter has autism.His son had all kinds of stomach problems but won't listen to anything I say............

Okay someone help me make a dx please!!!!!!

mamaw

From what I know about shimgles from people that have had it, is that it is painful and debilitating and if he had it, he WOULD definitely know it! As far as his son, some people have to really hit rock-bottom before they would even consider giving up gluten.

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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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