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Worsening Of Dh When Starting gluten-free Diet?

emerisle

By emerisle
in Dermatitis Herpetiformis

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emerisle Newbie
emerisle
Posted

Is this a common experience? I thought that I had read somewhere that it was, but am having trouble finding it now.

I am newly diagnosed and struggling with the large learning curve necessary for the gluten-free diet as well as DH. I am awaiting my G6PD test to come back before starting a trial of dapsone...

Thanks! Beth

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teebs in WV Apprentice
teebs in WV
Posted

Beth,

Everyone is different. I know - this is not the answer you were hoping for. Dapsone should help you immensely. It cleared up the worst of my DH symptoms in a few days (the gluten-free diet alone did not). It can take up to two years for the DH to go away (unless you are taking dapsone). So be patient and hang in there. It is tough at first, but it does get easier. If you stay gluten-free, you should be able to go off of the dapsone sometime. I have been at it for a year now - and I am extremely careful. But I had to increase my dosage to get my itching to subside.

lovegrov Collaborator
lovegrov
Posted

Everybody is different. I was unusual in that mine cleared immediately. And I mean that after I went gluten-free I never took another dapsone, even though I had been taking it for 20 years.

richard

tarnalberry Community Regular
tarnalberry
Posted

if it's DH, don't forget to significantly reduce iodine intake for a couple weeks/months, as iodine is part of the reaction that creates the deposits that lead to DH.

emerisle Newbie
emerisle
Posted
  • Author
if it's DH, don't forget to significantly reduce iodine intake for a couple weeks/months, as iodine is part of the reaction that creates the deposits that lead to DH.

So besides salt and seaweed, what should I avoid?

tarnalberry Community Regular
tarnalberry
Posted
So besides salt and seaweed, what should I avoid?

dairy, eggs, seafood... according to a google search.

  • 2 months later...
Katie618 Apprentice
Katie618
Posted

Eggs??!?!? i didnt know that would effect DH!!!!!!!

my sister told me about milk (thank God!! it has made a diff) i had no idea about eggs!!!

i stay away from iodized salt, seaweed (however, i do like sushi) and only have seafood when i have a sushi (besides outback, sushi it the only other place i can go on a "normal" date with my boyfriend)''

any other advice, my DH is going back and forth--some days good, most days not so good

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Rkasyank Newbie
Rkasyank
Posted

I wonder too. I think my husband may have that, has dermatitis for 2 yrs, dermatologist unable to get rid of it completely. How long does one have to be on gluten-free diet for the dermatitis to go away?

Sue

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