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My Frustrating Story- Advice?

Kopka

By Kopka
in Dermatitis Herpetiformis

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Kopka Rookie
Kopka
Posted

After lurking around these forums I am finally making a post. Just looking for some insight/advice from experienced people, so thank you in advance.

 

I will try and make this as short as possible I promise!

 

For as long as I can remember I have had GI issues. The usual bloating, gas, diareah, constipation. Had food allergy test and blood test when I was maybe 10-13 years old and of course nothing. Just the usual "Irritable Bowel Syndrom". Fast forward to last year-I am now 28 years old-

 

  • I started to get incredibly itchy bumps on my elbows that lasted maybe 3 weeks. Never went to doctor and eventually just went away
  • A couple months after that I got another itchy rash but this time on my thighs (not the groin but the top of both thighs, symettrical). This was so itchy that I went to my doctor. Doctor said its probably contact dermatitis. Gave me a cortizone cream that did nothing.
  • 2 weeks later went to Dermatologist. Dermatologist did not know what it was but said looks like eczema. Gave me corbetisol which i think did help but not for long.

Around this time I started to read about celiac and gluten. Immediatly i thought this has to be it so I tried gluten free and rash went away. However I dont know if it was the clobetasol or the gluten free. Here are some other interesting facts that should be factored in:

 

  • around this time I find out my first cousin (my dads brothers son) was just diagnosed with Celiac by blood test and endoscope
  • My dad has Type 1 diabetes since age 10
  • my uncle, his brother has type 1 diabetes since age 9
  • reason for including this is the auto immune connection

So at this point im kind of doing a gluten free diet but really only about 70%. The rash comes back and i go see a different dermatologist. He has no idea what it is. I ask about DH, and he says hes only seen 4 patients in 25 years with DH but he says ok ill do a biopsy. He does a biopsy ON THE INFECTED SKIN which is a no no. Plus the rash was 3 weeks old and already itched to the point of bruising. Of course biopsy comes back negative for DH. Doctor says its def not the alternative diagnosis's listed like eczema, scabies, etc. So 3 doctors literally said "i have no idea what this is".

 

 

So, finally on to my question. I went 80% gluten free for the past 6 month with no rash and it did help with the GI symptoms. However, I NEED a diagnosis to be 100% gluten free or else I just cheat. So 3 weeks ago i started eating gluten again pretty heavily. The rash is just starting to appear on my thighs again. Its never appeared on the elbows except the first time.

 

Is it possible to have a 3 week lag time from starting to eat gluten and getting the rash?? Everything I read says usually 24-48 hours but its never been that way for me. Both times I reintroduced gluten it was about 3-4 weeks until the rash appeared. Right now i am trying to get into a derm who is knowledagble on DH but thought maybe you guys could give me some insight or thoughts.

 

Thanks a ton and sorry for the long post!! Oh and I will post a picture as soon as I figure out how to.

 

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BlessedMommy Rising Star
BlessedMommy
Posted

I'm sorry, that sounds frustrating.

 

Have you tried celiac blood testing yet?

Kopka Rookie
Kopka
Posted
  • Author

I'm sorry, that sounds frustrating.

 

Have you tried celiac blood testing yet?

 

Yeah I actually did have a blood test done but it was by a GI doctor who said "i dont think you have celiac" within 2 minutes of meeting him. That ticked me off. So i dont know if he got all the right test and what not, plus I keep reading celiacs with DH are often false negative for blood work but dont know what to believe.

Kopka Rookie
Kopka
Posted
  • Author

Oh also I forgot to add this-

 

When I went to get my blood test taken I had been using corbetosol on my rash which they told me is one of the most potent topical steroids i can have. I had been using it for 3-4 weeks. I have heard this can alter blood test results but cant find any actual medical journals or doctors saying this just people on forums. Anyone ever heard about this??

 

Also why cant I post a picture on this forum and how do i add them to "My Media"

Kopka Rookie
Kopka
Posted
  • Author

Figured it out. Here are some pictures of the first time I got it. It was like this on both thighs. 

 

847_zps737cbaab.webp848_zps56db1ee1.webp849_zpse72bd7f2.webp

GF Lover Rising Star
GF Lover
Posted

I have to say, it doesn't look like DH to me.  And yes, topical steroids will effect a skin biopsy result since the antibodies are under the skin.  It almost looks like you had your lap top on your bare skin.  I don't really know how you would biopsy that unless the Dr. just took it from one side.  

 

There are many rashes that can develop with celiac that are not DH.  And they may go away eating gluten-free.  I would make sure all of the appropriate blood tests were done for Celiac.  How much gluten were you eating at the time of your blood tests?  

 

Remember, Celiac is an autoimmune disease.  Your immune system can attack any where in or on your body.

 

You really need to know the answers to those question to make informed decision as to what to do going forward.

 

Best Wishes,

 

Colleen 

Kopka Rookie
Kopka
Posted
  • Author

Thanks for your reply. These pics are from the first time I had a rash, later I got them on elbows and lower shoulder blade that looked much more like classic DH, but yes I agree these don't look like the stuff I see online. Just odd that no derm could tell me what it was. What they do know is that it's definitely autoimmune based on the biopsy (which was taken from involved skin after I scratched it so much I had bruises the size of dinner plates on my thighs so might not even count). It's just so frustrating-- my dad and uncle with type 1 diabetes and now first cousin with celiac all of which are autoimmune. I feel like it has to be something related.

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