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Which Type Of Doctor Should I Go To?


maitrimama

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maitrimama Apprentice

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

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

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

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

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

richard

glutengirl42 Rookie

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

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

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

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

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

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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    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
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