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Dapsone ~ Members Taking Dapsone Please Respond.


sisterlynr

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Victoria1234 Experienced

How long have you been gluten-free? Took my dh many months to go away after I mastered the diet.

  • 2 weeks later...

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Tim (DH Poster Boy) Newbie

Still eating gluten with DH ... can't fathom it.

It takes two things to create DH - celiac disease, ie. your own body producing gluten antibodies when gluten is consumed, and iodine.  Eliminate the iodine in your diet the rash will subside...unfortunately you will probably cook off your thyroid.  I'd rather eliminate the gluten.  Any doctor that tells you that you can have DH and still eat gluten should get booted from the medical field.  As far as dapsone is concerned it doesn't cure anything it just suppresses you immune system's response to gluten - I was on it for 45 days saw some changes in the rash but not a lot of improvement - but it was allergy season and I think I also get rashes from hay fever which is an allergic response (histamines not anitobodies) so who knows - but the dapsone came with some pain in my kidneys or liver area every day and my blood work was moving out of the normal range...again I'd rather remove the gluten from my diet - especially when I read that aplastic-anemia (sp?) is a possible side effect.  I accidentally glutened myself with some rice that was packaged in a facility that also packaged wheat products (dumb dumb dumb...) it's taken about 4 months for the resulting rash to subside to the point where it was before I shot myself in the foot.  So for me at least that's probably about how long it takes to clear newly created antibodies - and that's why I can't fathom anyone with DH even considering eating gluten.  Even if the dapsone works and you tolerate it well, ie. blood work stays within normal ranges - the gluten is still causing your body to create the antibodies and is still storing them up in the top layer of your skin so that it will take that much longer to clear once going gluten free which is the only option for people with celiac disease which EVERYONE WITH DH HAS or you wouldn't have DH.  Eating gluten with DH is like eating sugar with diabetes.

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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