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Celiac Disease, Sjogrens Syndrome and now Dermatitis Herpetiformis


Triple Whammy

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Triple Whammy Newbie

I have been a medically diagnosed coeliac for nearly 30 years so I'm so used to the GFD and it's a walk in the park in my house. Three years ago I was diagnosed with Sjogrens Syndrome which I mostly manage with Plaquenil but last December I was diagnosed with Dermatitis Herpetiformis as well. I'm very strict with my diet and a 5 yearly endoscopy mid last year showed that but 200mg of Dapsone is barely controlling the insane DH itching but has caused such bad hemolytic anemia I've got to cut it back. My dermatologist added Doxycycline and Vit B3 to the drug cocktail but so far I haven't noticed a difference. Any suggestions on what my next step should be?


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GFinDC Veteran

Hi,

DH reacts to gluten in the diet.  Members report it is sensitive to very small amounts of gluten.  So you might need to review your foods, vitamins, and maybe teas or other drinks to see if they could possibly have cross-contamination issues.

Also, some members report doing their DH subsiding faster if they avoid iodine.

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    • HilaryM
      Thank you Scott - I can’t think of much that’s changed diet wise but I’ll definitely try to see if any of this works and probiotics are a great idea thank you!
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    • RMJ
      Yes, it would make sense to go mostly gluten free, since it gives your troubles.
    • SMK7
      Yes, I made an effort to eat extra gluten at least 3 weeks before the endoscopy. I probably ate a some amount in the weeks before that. I had diarrhea, which resolved once I cut back after the endoscopy. So I think it would make sense to go mostly gluten free?  
    • RMJ
      Yay for the normal biopsy! Thanks for the follow up. Were you eating gluten prior to the endoscopy?
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