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First Post--questions, Questions, Questions....


ElvisLives

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ElvisLives Apprentice

Greetings from the foothills of North Carolina!

OK, here we go: First of all, I was diagnosed with DH around September 1st. I had both types of testing. I also have psoriasis, which is what the dermatologist thought was the problem originally. During the worst of my recent outbreak, which began in mid-June, the itching was unbelievably intense!

For the last month, I have been gluten-free (although, I may have made mistakes as I am learning). My DH has been quiet for the last few weeks. Now, all of the sudden, it is coming on strong (elbows and knees). I have yet to use Dapsone since my outbreaks are limited to a few areas.

Several questions: 1) I am taking large doses of Advil and Aleve for a muscle issue. After looking around the site, I see that folks claim that his can lead to outbreaks. Are there studies that bear this out? Or, do we just have anecdotal evidence?

2) I love to drink beer, and as much Red Bridge beer as I am purchasing, I ought to own stock in the company! This is gluten free beer. But, there seems to be some correlation between heavy drinking and psoriasis outbreaks. Can drinking gluten free beer lead to DH outbreaks?

3) During this recent outbreak, I also have small areas of redness with little bumps which itch mildly to moderately. These issues have arisen on my inner forearm, just above my knees, etc. But, there are no blisters in the classic DH sense. Any ideas as to what this might be?

4) Have any folks here developed lymphoma due to untreated DH?

Thanks for any help! I hope to get to know you all better.


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Ahorsesoul Enthusiast

Psoriasis can also look like Mycosis Fungoides. I have a family member (32 yrs old) who was being treated for psoriasis for years. He happened to find a doctor who knew this disease is often (yes often) mistaken for psoriasis. It's another disease ,like celiac, which is still thought to be rare. And don't think you have to be older to have this. Most cases aren't found until the patient has been treated for psoriasis for most of their lives.

Of course gluten can casuse psoriasis like symptoms. But once gluten free if it doesn't go away I strongly suggest you have your doctor do a biopsy.

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    • Aretaeus Cappadocia
      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
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      oops. I didn't see that before posting or I would have at least referenced it. The two recipes are pretty similar, but I think the newer one is a little simpler/faster. Next time though I will search more before posting.
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