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New Dx of DH

RNinGA

By RNinGA
in Dermatitis Herpetiformis

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RNinGA Newbie
RNinGA
Posted

So have been (at least I think I have been) eating gluten free for the last two weeks and have noticed an increase in my DH.  Is this common?  I also started on the topical dapsone around the same time.

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!  

I encourage you to read postings in our DH section.  I do not have DH, but from all the posts I have seen over the years, DH can take longer to resolve.  DH seems to have a mind of its own.  You must be extremely strict on the GF diet.  More so than celiacs with intestinal symptoms.   Best to stick to Whole Foods and avoid going out to restaurants at least until you have mastered the diet.  Temporarily avoiding foods with high iodine levels can help too.  

Remember, CD is an autoimmune disorder.  When exposed to gluten antibodies start to increase (flare up).  The antibodies can keep going and going.  Everyone has different responses.  For me, an exposure can last three to six months.  

The good news is you know the source of your rash -- gluten!  

GFinDC Veteran
GFinDC
Posted

Hi RNinGA,

IMHO it's really helpful for anyone with celiac disease going gf to stick with a simple whole foods diet for the first 6 months.  It's much easier to avoid gluten exposure in our foods if the foods we are eating are naturally gf, like meats, veggies, nuts, and eggs.  Also the ingredients lists are much shorter and faster to read on whole foods.  Bonus! :)

I also think it is helpful to avoid eating out at restaurants and at friends unless they are really good at the gf diet.  It is generally ok to take your own food though if you check with the people first.

The other things that can be helpful are to avoid processed foods, even GF processed foods for a while.  And also avoid dairy.  Gut damage can cause gas and bloating and pain for some of us, and processed foods and dairy can make that worse.  Carbs and sugary foods are a problem too in a damaged gut that can't digest them right.

Eggs may be a bad idea I suppose with DH as they have iodine in them.  Generally it's helpful to avoid iodine when trying to get the DH rash under control.  At least that's what the DH'ers here say.  I don't have DH myself.

There's a stickied thread titled "Newbie 101" in the "Coping With " forum section.  It may have some helpful tips.

Welcome to the forum RNinGA! :)

squirmingitch Veteran
squirmingitch
Posted
9 hours ago, RNinGA said:

So have been (at least I think I have been) eating gluten free for the last two weeks and have noticed an increase in my DH.  Is this common?  I also started on the topical dapsone around the same time.

DH doesn't magically disappear when you go gluten free. It doesn't necessarily follow a logical course of action. In other words, it doesn't start getting better & better & better & better & then gone. It can/will be a roller coaster ride. The rash can get better & then flare or not. The antibodies are under our skin and only when they get out from under our skin will we be truly free of the rash AS LONG AS YOU DON'T GET GLUTENED.

BTW, the iodine in eggs is contained in the yolk but egg whites don't have the iodine concentration so if you're going low iodine, egg whites are a-okay.

RNinGA Newbie
RNinGA
Posted
  • Author

Thank you everyone.  I can do this.  I had gastric bypass 4 years ago so I am used to making food choices now.

  • 2 weeks later...
Charli61 Apprentice
Charli61
Posted

For me it took almost a year of being gluten-free to get it mostly cleared up also the arthritis took about the same time to go away, but I had been un-diagnosed for about 10 years  - which may have made things a little more difficult to get rid of.  Apparently I am an odd one, DH and the typical intestinal issues.... I had the whole works and how!!  My understanding is that most have one or the other, not both  ( I guess I am just an over achiever).

  • 2 weeks later...
RNinGA Newbie
RNinGA
Posted
  • Author

So after seeing the flare up a couple of weeks ago, things are going so much better.  MD says my rash is looking fantastic on the topical Dapsone.  No more burning and itching.  Wahoo!!!.  We are now a mostly gluten free household ( still allowing DH and daughters pizza and a few other things).

 

 

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squirmingitch Veteran
squirmingitch
Posted

Great to hear RNinGA!!!

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