CELIAC (SPRUE) DISEASE COMMUNITY
DH Diagnosis and Celiac Next Steps?

DH Diagnosis and Celiac Next Steps?

Scenario:  I've recently been diagnosed with Dermatitis Herpetiformis (DH) via positive skin biopsy with a dermatologist.  First course of action was a gluten-free diet and Dapsone oral treatment which cleared the DH syptoms (symptoms) up right away.  I eliminated the Dapsone and have since tried to persist with just a gluten-free diet but the DH syptoms (symptoms) (skin blisters) are raging.  I have no other Celiac's related symptoms but do have a known genetic link to Celiac's.  

Questions:  First, what more can I do for DH syptoms (symptoms) other than cut Gluten and take Dapsone?  Second, is long-term Dapsone use harmful?  Third, what steps do I take to assess the underlying causes and unseen symptoms related to DH and ultimately confirm / deny Celiac's?
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I also have DH....I was told you can have Celiac without DH but, not DH without celiac, for me the longer that I am gluten free the less blisters I have.  I noticed that when I'm stressed I have breakouts of the blisters.
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It sounds like even though you are gluten free, you may be getting some gluten in your diet...it might be in something that says modified food starch, etc.Also - It can take up to a year or so after you have been totally gluten free for all of the dh symptoms to go away. Remember, you have damaged the villi and it takes time for them to grow back. And every time you ingest even a little bit of gluten, your progress is impeded.
Labelling laws are making choosing gluten free food easier. There is a web site I know of that spells out a  lot and has helped me. If you want it, please respond to this and I will give it to you. Our local support group uses it and  it is updated all the time.
What does your doctor and dietician say about your diet and the dh?
I have celiac. I had a lot of the symptoms up to 1990 when I was diagnosed. Not knowing it was for life, I was on the diet for 6 years and then went off it. Almost 5 years ago my son was diagnosed (he was 22) and he asked me to get the blood test. I had no symptoms - but my numbers were higher than his. It took 2 years for us to convince my daughter - who also had no symptoms to get tested. She also has it and the biopsy showed the atrophy of the villi.  
  
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