Gluten-free & Dapsone - but still struggling

[dwaage1]

I've been GF and on Dapsone for two full years. I've been treating at Mayo Clinic where their reputation leads one to be optimistic about resolving this miserable condition. This week I told the doc that perhaps I should stop the Dapsone - to see if it actually makes any difference - because my symptoms of late have been really bad So I stopped the Dapsone, and now 3 days later I am blistering and itching at a new pace of severe outbreak. I am excited about finding this site though, to at least share the misery, and perhaps get some new ideas.

I'm curious about the issue of iodine. I have stopped using iodized salt, but I notice that my adult vitamin has 150% adult minimum requirement of iodine - and I take it daily. Has iodine been a culprit for many of the afflicted? Could this be what I've missed?

[dwaage1]

Meat, baked potato, vegetables cooked or raw, some dairy (sour cream, cottage cheese, butter, yogurt, cheese) fruit. popcorn for snack. Thanks for responding.

[Penel]

From what I've read, it seems that too much iodine can worsen DH. Perhaps try some vitamins with a lower iodine content?

celiac.org/blog/2015/10/der...

This is a link to some past posts on DH which may be useful.

healthunlocked.com/search/d...

[dwaage1]

Also wondering what most who have this condition use directly on the itching blisters. I have been using Triamcinolone Cream - I believe it's a cortisone ingredient that helps with the itch, but it does tend to leave the skin in bad shape. I have started using the Triamcinolone Cream along with an anti itch prescription - Atarax (Hydroxyzine) - which is suppose to act as a sleeping aid too.

[dwaage1]

I've seen a few posts refer to being lactose-free. Is this a common connection with DH, since both seem to be autoimmune problems. I did have one doctor ask if I had ever been tested for lactose intolerance - just wondering if getting off dairy products was beneficial for anyone having the DH condition.

[Heman69 in reply to dwaage1]

I'm lactose free as well as gluten but it makes no difference the skin still peels of my face.

[Jacks]

I was originally diagnosed with DH and coeliac disease. The DH was the thing that made the doctor sit up and take notice. The itchy, burning, painful skin was horrendous. The gluten free diet did help but after being unable to take Dapsone I followed a low halide diet. So for low iodine, I only ate river fish, not seafood and that seemed okay. But halides are also fluorides, bromide, chlorides etc. I replaced fluoride toothpaste with a health shop brand and it helped but freaked out my dentist! Do you need iodised salt? Are you at risk of a goitre? [nb All salt is halide.]

Lactose is nothing to do with this. For lactose read "gas", so "fart, belch, abdominal madness". If you have a lactose intolerance you will react to it by belching first, and you'll clear the room with the smell from the other end!

However, milk and dairy contain iodine, you're having quite a lot in your list, but don't give up on it, it is a good protein.

Avoid kelp in supplements.

I'd change my vitamin - it could be this alone that is tipping you over the edge. Lithium for bipolar disorder, is a halide but I wouldn't advise just stopping it, but talking the whole thing over with a medic.

I think you can do it by making a few tweaks and it isn't forever. I'm fine now and can include all these in my diet, but it took a couple of years to get clear.