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Which Type Of Doctor Should I Go To?

maitrimama

By maitrimama
in Dermatitis Herpetiformis

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maitrimama Apprentice
maitrimama
Posted

I have a sneaking suspicion that the horrible rash I have had since July that the doctor thought was shingles is not shingles but DH. What type of Dr should I go to for a biopsy? Dermatologist? I have already had blood tests and they are negative. My 15 yr old daughter was diagnosed by biopsy with celiac and ibd and just last night I had a horrible aha moment when I realized that the "shingles" I have had since July was in likelihood DH.

I grew up in a home where you didn't (still don't) complain about every little ache or pain, you pulled yourself up by the bootstraps and keep moving forward. But if I look back over the last couple years I have migraines different from any in the past, severe indigestion (gerd that has gotten much worse), a rash on my bottom that I mostly ignore because I can't see it, unexplained sweating and fatigue. I am hoping I am wrong but have a funny feeling that the new rash and symptoms are pointing in the direction of DH. Has any one had a similar situation or symptoms?

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maitrimama Apprentice
maitrimama
Posted
  • Author

I also have had very elevated lipase (pancreatic enzyme) levels that they have nevered explained, vision issues and involuntary movement. The more I remember the more nervous I get.

Hopeful1950 Explorer
Hopeful1950
Posted

Since DH is on the skin, we have all usually started with a dermatologist. I had no luck with any because they didn't really take the time to listen to me. An allergist finally made the connection and diagnosed me.

Since your daughter has been diagnosed, maybe start with the doctor who helped her. If he/she is not comfortable working with a skin condition maybe you can get referred to a dermatologist who can help you. To diagnose DH, the dermatologist must know how to do the biopsy correctly and also must know what to request from the lab.

If you search this forum you'll find a lot of information on how the biopsy should be done.

The most important thing is to keep advocating for yourself until you have a definitive answer.

maitrimama Apprentice
maitrimama
Posted
  • Author

Thank you for the info. My daughter's pediatrician actually started the ball rolling right off the bat. On her first visit complaint of belly pain etc. He ordered the correct blood tests and stool samples, once they got those results she was sent directly to a children's gi. Endo/colonoscopy were done and she was diagnosed with celiac and ibd. She is 15 and angry at this point. I have made an appt with a very nerdy but knowledgable dermatologist. Being bipolar and dealing with the pysch side of medicine I have learned to advocate for myself and my children!

lovegrov Collaborator
lovegrov
Posted

A dermatologist diagnosed mine just by looking. I had the classic weeping blisters.

richard

glutengirl42 Rookie
glutengirl42
Posted

I would go with an allergist first. Had I not visited an allergist in conjuncion with a Gastroenterologist I would have never been diagnosed.

maitrimama Apprentice
maitrimama
Posted
  • Author

Go figure - my pyschiatrist thinks it's DH based on things he has seen in the last year but not the dermatologist?! I have gone gluten free because my daughter has been diagnosed by endo/colonoscopy biopsy so we will see what happens.

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pricklypear1971 Community Regular
pricklypear1971
Posted

If you want a biopsy go to a derm. DH is very hard to biopsy.

If you want to see if it acts like DH, go on a low-iodine diet. If it recedes at all, it's a good indicator that it's DH.

maitrimama Apprentice
maitrimama
Posted
  • Author

Lol, I already feel like I am starving but I'll ask anyway...what foods should eliminate if I want to reduce iodine?

mushroom Proficient
mushroom
Posted

Lol, I already feel like I am starving but I'll ask anyway...what foods should eliminate if I want to reduce iodine?

Iodized salt, fish and fish oils, eggs, cheddar cheese, there's a start

pricklypear1971 Community Regular
pricklypear1971
Posted

Lol, I already feel like I am starving but I'll ask anyway...what foods should eliminate if I want to reduce iodine?

There's a low-iodine cookbook and guidelines on the thyca website. Google it.

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      Shingles - Could It Be Related to Gluten/ Celiac

      By Flash1970 · Posted

      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
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      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
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      GI DX celiac despite neg serology and no biopsy

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      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
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