J in Cincy

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Everything posted by J in Cincy

  1. On average my DH has been better with a gluten-free diet (additional benefit to 50 mg/day Dapsone) and I have been eating gluten-free for ~6 months. However, I have occasional, seemingly random, outbreaks and it doesn't seem to be getting much better when I thought it was supposed to clear up completely. And without Dapsone I get an immediate rash (<1 day) despite eating gluten-free. It is frustrating.... my wife and kids are not gluten-free so there is likely small amounts of CC but it has got to be very small amounts. It seems like I am either getting more sensitive or it will just take time .... the doctor seems to think that it should be immediate i.e. no gluten = no dh rash & blisters. I am curious to hear how long it has taken people to heal or eliminate symptoms with a gluten-free diet and if they are more sensitive now than before going gluten-free. Thanks for your response!
  2. I am looking for some advice regarding dapsone use. I have farely minor GI symptoms treatable with prilosec and no villous atrophy. The DH is tolerable with 50mg/day dapsone but I probably need more to completely eliminate symptoms. Both the GI doctor and dermatologist do NOT recommend a gluten-free diet - presumably because it will be too much trouble - and I tend to agree - there is a lot of time spent planning and cooking and worrying. Not too mention gluten-free bread and gluten-free beer aren't quite as good as their non-gluten-free counter parts. However, I want to better understand dapsone side effects? It isn't very clear from what I have read - most of it negative towards dapsone whereas my doctors say it is very safe. Are there stories out there, good or bad regarding long term dapsone use at 50 - 100 mg/day? Just trying to make a tough decision... thanks in advance for helping to decide!
  3. J in Cincy

    Dapsone Or gluten-free?

    Thanks for all the advice - over whelmingly to go gluten-free. I have been eating gluten-free for the last few weeks except for possibly smoke flavor and carmel color . . . and I'm slowly figuring out products based on the websites. My rash is better (still with 25mg dapsone) but I don't notice anything terribly different as far GI symptoms but I assume it takes time... I'm also seeing a new doc in a few weeks to see what he says. Thanks again
  4. J in Cincy


    Ask your dermatologist about dapsone or possibly other drugs to treat DH. Dapsone worked for me within a few days. From what I have read it can take months of a gluten-free diet before you can reduce dapsone dosage and be symptom free. Good luck!