Hi everyone,
I haven't posted for a while, but I'm hoping someone in the forum can comment on using the RX drug Dapsone for Dermatitis Herpetiformis (DH).
I've tested negative twice via blood tests for Celiac, but cannot handle gluten at all. Not only do I experience digestive symptoms, but I also break out in DH on my scalp and other areas of my body. The scalp effects are chronic and I've had them for almost 10 years now. The sores and DH outbreaks wax and wane, but immediately flare w/ any exposure to gluten--no matter how small.
I've only recently realized that I react to even the slightest cross contamination from gluten, which manifests itself in the DH symptoms I experience. If I decided to eat a lot of gluten, which obviously I won't do, I'd experience extreme digestive issues. However, when only slightly 'glutened,' through cross contamination or accidental ingestion, I'm alerted by the sores appearing on my scalp. Needless to say, DH is painful, irritating, and frustrating.
It's baffling to me because I'm told I don't have Celiac, but I react terribly to gluten. I'm told I have Ulcerative Colitis, but I don't take meds and have no issues as long as I avoid gluten (and to a lesser degree dairy/eggs). Obviously, in spite of the negative tests, my body's reaction is telling me I have issues w/ gluten and now I realize I have issues even w/ foods 'manufactured in the same facility as wheat' or 'on shared equipment w/ wheat.'
Anyway, background info aside, I'm hoping that someone here has experience w/ the drug Dapsone for treating DH. I have an appointment w/ my dermatologist in two weeks to discuss starting Dapsone, but from what I've read it's a heavy duty drug that requires frequent blood tests to monitor for serious side effects (anemia, etc.). I saw my primary care doc today to discuss using Dapsone, but he'd never prescribed it in his 15 years of practice so he referred me back to my dermatologist. I appreciate his caution--but, again, so frustrating!
I plan to continue to eat gluten-free for the rest of my life, but I'd like to be free of the constant pain and frustration of DH through the use of Dapsone if possible. If anyone has any experience in dealing w/ DH and/our using Dapsone, please chime in because it's not a common condition that many people have.
Thanks for reading. =)
Dapsone for DH
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Dapsone for DH
"Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game." ~Voltaire
Hi Nathan,
Welcome back. While having DH proves that you have celiac disease, the catch is that DH can present even though small intestinal damage is not severe enough to qualify for a celiac disease diagnosis. (IOW DH can present before Marsh 3 or better villus damage develops, which means that the blood tests will also be negative for celiac disease). Obviously, your body is smarter than your doctors, because it's much more sensitive to gluten than the tests used to diagnose celiac disease. I've read that DH can be slow to resolve, long after diet changes have been made, but that's probably due to the fact that anti-gliadin antibodies have a relatively long half-life, so it takes them a long time to fade away.
Dapsone, of course, is primarily used to treat leprosy, but apparently it's effective for treating DH, (though not without risks, as you point out). I'm not sure if any other members have used or not, but you may be interested in these previous discussions:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10945
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11255
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10895
You seem to be having the same problem that I, and many other members are having, with cross-contamination by trace amounts of gluten.
I have a suggestion that may or may not work, but I think it's worth a try. Try avoiding foods high in histamines, and foods that trigger the degranulation of mast cells. IOW, I have a hunch that DH may be associated with mast cell activation syndrome, (MCAS).
The reason why I suspect that you may have MCAS, is because of your sensitivity to bananas. That's not a common food-sensitivity, but bananas are high in histamine content. And most of the other foods that you have listed are also high-histamine foods, FWIW.
Basically, foods in this category are either fermented,dried, or aged. IOW, don't eat leftovers, if you are trying to avoid histamines. You can find a list of such foods at this link:
http://www.michiganallergy.com/food_and_histamine.shtml
Also, try taking an antihistamine before eating any foods that may contain histamines, or foods that are known to trigger the release of histamines. You may have to experiment to find the one that works best for you.
Good luck, and please let us know if this helps or not, because many of us are currently experimenting with newly-discovered mast cell issues.
Tex
Welcome back. While having DH proves that you have celiac disease, the catch is that DH can present even though small intestinal damage is not severe enough to qualify for a celiac disease diagnosis. (IOW DH can present before Marsh 3 or better villus damage develops, which means that the blood tests will also be negative for celiac disease). Obviously, your body is smarter than your doctors, because it's much more sensitive to gluten than the tests used to diagnose celiac disease. I've read that DH can be slow to resolve, long after diet changes have been made, but that's probably due to the fact that anti-gliadin antibodies have a relatively long half-life, so it takes them a long time to fade away.
Dapsone, of course, is primarily used to treat leprosy, but apparently it's effective for treating DH, (though not without risks, as you point out). I'm not sure if any other members have used or not, but you may be interested in these previous discussions:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10945
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11255
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10895
You seem to be having the same problem that I, and many other members are having, with cross-contamination by trace amounts of gluten.
I have a suggestion that may or may not work, but I think it's worth a try. Try avoiding foods high in histamines, and foods that trigger the degranulation of mast cells. IOW, I have a hunch that DH may be associated with mast cell activation syndrome, (MCAS).
The reason why I suspect that you may have MCAS, is because of your sensitivity to bananas. That's not a common food-sensitivity, but bananas are high in histamine content. And most of the other foods that you have listed are also high-histamine foods, FWIW.
Basically, foods in this category are either fermented,dried, or aged. IOW, don't eat leftovers, if you are trying to avoid histamines. You can find a list of such foods at this link:
http://www.michiganallergy.com/food_and_histamine.shtml
Also, try taking an antihistamine before eating any foods that may contain histamines, or foods that are known to trigger the release of histamines. You may have to experiment to find the one that works best for you.
Good luck, and please let us know if this helps or not, because many of us are currently experimenting with newly-discovered mast cell issues.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.