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I Think I Have Celiacs Disease And Dh Rash. Please Help!

JujuBa

By JujuBa
in Dermatitis Herpetiformis

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JujuBa Newbie
JujuBa
Posted

Hi everybody,

 

I think that I may have Celiacs Disease and the DH rash.  I was hoping that since lots of you have experience with Celiacs Disease/ Gluten Intolerance, you might be able to help me out. My doctor does not seem to believe that a gluten intolerance is anything more than a fad. I have been so frustrated and really appreciate any advice/help you have!!

 

Here are my gluten-related symptoms:

 

  • Severe stomach problems for the past 13 years. These lasted until I decided to try giving up gluten last year. They are now MUCH better, although still not 100%.
  • Depression/Anxiety/Fatigue - also (amazingly) relieved after giving up gluten.
  • Chronic, itchy rash - began after giving up gluten

Gluten-Related History:

 

Since giving up gluten one year ago, I have developed a chronic, itchy rash.  The rash usually begins on my legs, and spreads over my whole body. It is worst on my legs, the sides of my hips, and my arms. It sometimes spreads to my hands, neck, back and face. It looks like the pictures that I have seen on the DH forum here. It is extremely itchy and doesn't seem to be caused by anything in particular (I have been keeping a food diary). I am a bit confused about why it started AFTER giving up gluten.

 

About 10 years ago, I had a test taken to check for Celiacs disease, which came back negative (I had a colonoscopy - a procedure I hope I'll never have to suffer through again!!). My gastroenterologist at the time diagnosed me with IBS and prescribed many types of pills, etc. - none of which worked. He also suggested that I eat only white bread, pasta and rice for a while, and then re-introduce other foods back into my diet to see what was causing my problems. (Obviously eating the bread, pasta, etc. did not relieve my symptoms). 

 

Since giving up gluten drastically relieved my symptoms, I assumed that I was gluten-intolerant. Now I am considering the possibility that i might have Celiacs.  I am careful about what I eat, but I still sometimes eat food that "may contain traces of gluten," etc., but perhaps I should start being more careful...?

 

Questions I'm hoping you can help me with:

  1. Is it possible my Celiacs test was not accurate, and do you think I should be tested again? (I understand a lot of the tests out there are inaccurate and many doctors don't know enough about Celiacs/Gluten Intolerance)
  2. Do you think that my rash is DH, and why did I only get it after giving up gluten?
  3. How much gluten do I have to reintroduce into my diet in order to be accurately tested (and is it worth it??)
  4. Do topical sources of gluten make a big difference? I haven't been checking for them...

 

 

Thank you so much, and I truly appreciate ANY help you can give me!!

 

Julie

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kareng Grand Master
kareng
Posted

Just because you didn't have celiac 10 years ago, doesn't mean you couldn't have it today. A colonoscopy doesn't check for Celiac, so it that is all you had, you weren't tested properly.

Sounds like you need a new doctor. Or at least show your doctor some info from a source he can trust like the Univ of

Chicago Med Ct.

Open Original Shared Link

I just realized you have been gluten-free for a year? You can't do any tests for Celiac without eating gluten. DH wouldn't appear after you go gluten-free. Maybe a Dermatologist could look at your rash?

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ItchyAbby Enthusiast
ItchyAbby
Posted

I also have IBS and anxiety and DH. The IBS cleared up almost immediately after going gluten-free.  Someone on here once told me "IBS is NOT a diagnosis, it's a symptom". Basically, when a doc says you have IBS, they are just telling you what you already know! The anxiety still waxes and wanes, but is much better. And the $%&#ing rash is still with me, but MUCH, MUCH better.

 

To answer your questions:

1 - Yes, the test most definitely could have been inaccurate. If you want to get tested again, you will have to eat something gluten every day for a few months, and even then you may get a negative. How important is a dx to you? You can read more about the "gluten challenge" here: Open Original Shared Link

 

2 - Is your household gluten free? How strict have you been with being gluten free? I am not questioning your intentions, mind you, but just trying to get an idea of the potential for getting cross-contaminated and possibly making mistakes. My DH showed up after I cut way back on gluten. This was 4.5 years ago when I started seeing my boyfriend. He was/is gluten intolerant so I just ate what he could eat, and cooked what he could eat, which meant most of my meals were gluten free. I would still eat gluten containing items infrequently, when I went out or something, and I was never too concerned about cross contamination (because I did not know I had a problem!) Does this sound at all like your situation?

 

3 - See #1

 

4 -Go through all of your toiletries and such with a fine tooth comb and eliminate anything suspicious. Some people say that you cannot absorb gluten through your skin, but why risk it? Also, there is anecdotal evidence here that people are sensitive to lotions with gluten in them. It's just not worth it!

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squirmingitch Veteran
squirmingitch
Posted

itchyAbby is right.

 

Also, if you are still getting traces of gluten then you can not say you gave up gluten. I'm not coming up against you, I'm just saying there is a difference & on this site or to celiacs, when one says they gave up gluten, it means they do not eat gluten at all & avoid cross contamination as if it were the plague. 

The dh rash can present if you are getting cross contaminated & that is certainly how you could turn up with dh "after you went gluten free" b/c you were never truly gluten free. The dh rash is sensitive to the tiniest amount of gluten. 

 

Also, I will disagree with Kareng that the dh rash can not appear after going gluten free. The very nature of the dh rash is b/c the antibodies get deposited under our skin & just b/c we go strict gluten free tomorrow does not mean the antibodies under our skin disappeared magically overnight. I wish that were true! If it were, then people with dh would not suffer the dh rash for years & years after going gluten free. It takes time for the antibodies to get out of our skin -- time differs with each individual & dh can & does flare long after having been strict gluten free. And that's a fact.

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ItchyAbby Enthusiast
ItchyAbby
Posted

Now that I think about it, my WORST flare happened after I went strictly gluten free. The last day I ate gluten was May 31, 2013. On about June 8th the rash spread for the first time to my tummy, and all the other areas were redder and angrier than ever before. Pure hell! About a month after that was when I got a new little spot on my inner thigh. Was it cc from my newly-gluten-free kitchen? Or was it just the time it took for the antibodies to make their presence known? I'll never know. This rash is the most mysterious, fascinating and infuriating thing I have ever encountered. A year does seem like a long time if you have been very strictly gluten-free. But if there is ANY bit of contamination, that may be all it takes for the rash to appear. (But sadly, is likely not enough to get you a positive on a blood test)

 

So, two things: You know gluten is bad for you. If you need to a dx then you will have to do a gluten challenge. Only you can decide if you are up for that. And, you need a new doctor, one who will be supportive of you and what you know to be true about your own body, dx or no.

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