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Newly Diagnosed Dh - Have A Couple Of Questions?

Tephie

By Tephie
in Dermatitis Herpetiformis

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Tephie Apprentice
Tephie
Posted

Hi All,

My name is Stephanie, I am 29 years old and was diagnosed with DH a few weeks ago. It's taken me almost three years to get this diagnosis, so I am glad that I do finally have a cause, but I still struggling with some of the aspects of the gluten free diet. I have a couple of questions:

1. I have been gluten free for 10 days (except for a bad experience at Olive Garden :( ) It seems that my rashes are now worse then they were before I started the gluten free diet, could I possibly be detoxing or could something else be going on?

2. I received my diagnosis from a group of dermatologists that study this disease quite a bit, however, he told me not to worry about personal care products or pills....should I be watching both of these as closely as I do food?

Any words of wisdom would be appreciated, and I am sure I will be back here with more questions.

Thanks in advance, Stephanie :D

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Eriella Explorer
Eriella
Posted

Hi,

First of all, welcome to the board!

I am not sure about rashes, so I'll allow someone else to answer it.

As far as medicine goes, doctors can be wrong. Check your medications (easiest way is by googling the name of the medicine and gluten). Unless they are life or death, see if you can switch to a gluten free brand if necessary.

With personal care products, if it has gluten, and you could get it in your mouth, then don't use it. Example-- your shampoo has gluten in it, you rub your hands through your hair/pull it back, and then you grab a handful of pretzels :( . If you are one of those people who is actually good about constantly washing your hands and not eating with your fingers, then the glutenous products are fine. But it is a heck of a lot easier to find gluten free alternatives.

If you need any advice, please ask! This forum has great advice!

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Eriella Explorer
Eriella
Posted

Hi,

First of all, welcome to the board!

I am not sure about rashes, so I'll allow someone else to answer it.

As far as medicine goes, doctors can be wrong. Check your medications (easiest way is by googling the name of the medicine and gluten). Unless they are life or death, see if you can switch to a gluten free brand if necessary.

With personal care products, if it has gluten, and you could get it in your mouth, then don't use it. Example-- your shampoo has gluten in it, you rub your hands through your hair/pull it back, and then you grab a handful of pretzels :( . If you are one of those people who is actually good about constantly washing your hands and not eating with your fingers, then the glutenous products are fine. But it is a heck of a lot easier to find gluten free alternatives.

If you need any advice, please ask! This forum has great advice!

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Tephie Apprentice
Tephie
  • Author
Posted
Hi,

First of all, welcome to the board!

I am not sure about rashes, so I'll allow someone else to answer it.

As far as medicine goes, doctors can be wrong. Check your medications (easiest way is by googling the name of the medicine and gluten). Unless they are life or death, see if you can switch to a gluten free brand if necessary.

With personal care products, if it has gluten, and you could get it in your mouth, then don't use it. Example-- your shampoo has gluten in it, you rub your hands through your hair/pull it back, and then you grab a handful of pretzels :( . If you are one of those people who is actually good about constantly washing your hands and not eating with your fingers, then the glutenous products are fine. But it is a heck of a lot easier to find gluten free alternatives.

If you need any advice, please ask! This forum has great advice!

Thanks Eriella for this reply and the reply to my other question. I never thought about the shampoo that way, guess I will be finding some new hair care products...good thing I am not too picky about my hair :rolleyes:

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Franceen Explorer
Franceen
Posted
Thanks Eriella for this reply and the reply to my other question. I never thought about the shampoo that way, guess I will be finding some new hair care products...good thing I am not too picky about my hair :rolleyes:

Welcome to the board. I have DH and only DH (not intestinal symptoms and no damage to villi)....But I have wicked DH if I eat one small gram of gluten!

I have never worried about personal care products and they've never bothered me (including lipstick - but I only wear that about once a month). I don't have the problem with my hair after it's dry. But, I've never checked my shampoo either - it might be gluten-free.

Lotions don't bother me, inlcuding those with wheat germ and oatmeal, etc.

My biggest problem is eating out in restaurants and at other people's homes.

I read the label of everything I buy and ask the ingredients of things I can't see the label of - and if it's iffy, I don't eat it.

When I first was diagnosed I had really bad DH all over my body. It took at least a couple of months to see improvement. And yes, it got worse before it got better - that's because it takes 3 days to 3 weeks to react to what you ate. Once it's cleared up it may be quicker to react - I react after 3 - 5 days now. But that still makes it really hard to know what you're reacting to. When I get "glutened" badly now, I have to take prednisone to stop the rash - or it will just keep getting worse and worse and worse because scatching causes more rash and on and on.

I DID avoid iodine at first because that can make the rash much worse in the beginning. After you have cleared up and become gluten-free for a while you can go back to it. (You need SOME in your diet, but you get plenty without added salt)

Drugs/vitamins are a major problem for gluten and a worse problem for iodine......especially vitamins - so I stopped vitamins for about 3 months.

I bought non-iodized salt and used it until I had used up the cannister (about 9 months).

And if you have a breakout, you may want to cut back on iodine for a while once again.

Hope this helps.

Franceen :rolleyes:

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