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DebNC84

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DebNC84 Apprentice
Have you tried Dapsone?

No but I've heard about it - prednizone may do the same thing... but isn't dapzone hard on the liver?


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happygirl Collaborator

According to Dr. Green:

"Q: What triggers DH?

The simple answer is ingested gluten. But iodine (potassium iodide, iodized salt, kelp), some anti-inflammatories and stress can exacerbate the disease. An area of controversy is whether or not gluten can be absorbed through the skin. Most medical experts say no, only dietary gluten is of concern.

DH can be "exquistely sensitive" to gluten. Since the skin may not be rid of the IgA deposits for 2+ years after starting a gluten-free diet, flare-ups may continue to occur. The skin response is much slower compared to the healing of the intestinal mucosa. In particular, outbreaks of facial and scalp lesions while on otherwise adequate treatment is not uncommon."

You would have to talk to your doctor about Dapsone. I don't have DH and can't comment on it. There are others on the board who have been on it, and in the DH/Celiac literature, it is recommended for DH.

Hope you find some relief.

lovegrov Collaborator

The only things that really work on DH are dapsone and some sort of sulfa drug that I can't name. Steroids don't work and are more dangerous to take anyway.

Dapsone has some scary warnings but the most severe reactions are very rare and extremely easy to monitor for (normally you'd go in a few times for a liver panel and blood cell count). Once the complication is found, reducing the dosage or stopping the drug almost without exception reverses things. I took it for more than 20 years and so did my father.

All drugs have potential side effects and many can be hard on the liver, but I've very rarely heard of anybody who wasn't able to take dapsone.

richard

DebNC84 Apprentice
All drugs have potential side effects and many can be hard on the liver, but I've very rarely heard of anybody who wasn't able to take dapsone.

richard

thanks for the information - it helps a lot.

I've eliminated a few food products yesterday - I was better last night - You know how the itching gets worse in the evenings... right? Well no new lesions in two days - itching was minimal last night so we'll see. I'm being careful to only put into my mouth that which I know is gluten free -

I also recently have been using Celtic Sea Salt - which I was told was best for minerals - I wonder what the iodine level is in this salt... probably hasn't helped me at all - but that isn't the reason I've been glutened... just elevated my symptoms.

Does anyone have any input about Celtic Sea Salt?

VioletBlue Contributor

I'm sorry you're having such a hard time. I don't have DH, but I've dealt with an itching problem and dermagraphia for the last couple years. Itching is the worst.

I did a quick google on Celtic Sea Salts and they apparently contain natural iodine and are "rich in trace minerals". It is possible to buy table salt at the grocery store that does not contain iodine, but most types and brands of natural sea salt will contain trace amounts of minerals and iodine.

thanks for the information - it helps a lot.

I've eliminated a few food products yesterday - I was better last night - You know how the itching gets worse in the evenings... right? Well no new lesions in two days - itching was minimal last night so we'll see. I'm being careful to only put into my mouth that which I know is gluten free -

I also recently have been using Celtic Sea Salt - which I was told was best for minerals - I wonder what the iodine level is in this salt... probably hasn't helped me at all - but that isn't the reason I've been glutened... just elevated my symptoms.

Does anyone have any input about Celtic Sea Salt?

DebNC84 Apprentice
I'm sorry you're having such a hard time. I don't have DH, but I've dealt with an itching problem and dermagraphia for the last couple years. Itching is the worst.

I did a quick google on Celtic Sea Salts and they apparently contain natural iodine and are "rich in trace minerals". It is possible to buy table salt at the grocery store that does not contain iodine, but most types and brands of natural sea salt will contain trace amounts of minerals and iodine.

I thought it "was safe to go back in the water" meaning I THOUGHT that it would be OK to add iodine into my diet again - since I had been doing so good and since iodine is essential for proper thyroid function - and I was doing so good at keeping the gluten out - but maybe by keeping iodine out of my diet my DH symptoms were lessened during accidental glutenings - and the whole reaon I'm reacting so heavily now is BECAUSE of the added iodine.

things that make you go hmmmmm.

you know... I REALLY don't like this. But i'm learning and that's good I guess. :)

for those of you who DON'T suffer from DH - Celtic Sea Salt is supposed to be the best thing to add if you are looking for natural minerals - the process the minerals right out of table salt... so there isn't anything left in it when they get through "purifying" it. I got this information from a book by David Brownstein, M.D. & Sheryl Shenefelt, C.N. - they have a book on Celiac - thyroid health - healthy eating - and more / my gynocologist who is gluten sensitive recommended them to me.

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