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Dh Testing

Monkeygirl1337

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Monkeygirl1337 Rookie
Monkeygirl1337
Posted

I have nonconfirmed celiac. I went gluten free before I got testing, so elimination of other causes  began. It's not fodmaps, or IBS, or other allegries or thyroid. My GP says its like every case he has seen. I think I have DH, because I have a red itchy rash that won't go away and gets worse after glutenings. It's annoying, ugly and itchy.  I am thinking into getting DH testing but I don't  know if it will work. I am pretty sensitive, so getting tested would ruin my life for weeks, but the rash is pretty bad.  It looks like DH.  I don't know if its DH, and if I need dapsone do I need testing.  I don't know what to do.

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cyclinglady Grand Master
cyclinglady
Posted

You need to be eating in order to get tested for celiac disease. That includes a blood panel or a skin biopsy. The only testing not requiring the consumption of gluten is a celiac gene test. This test just rules out celiac since about 30% of the population carries the genes but only 1% actually develop celiac disease.

A skin biopsy is very tricky and requires a dermatologist who understand celiac disease.

I suggest you read old forums in our DH section to help you understand how to get diagnosed.

You said you have been gluten free. How long? Why the need now to get a diagnosis?

Welcome to the forum and I hope we can help you!

cahill Collaborator
cahill
Posted

antibodies can stay active under the skin for up to 2 years after going gluten free , this is why the slightest bit of cross contamination can cause a flair in DH.

The trickiest part of getting a diagnosis by skin biopsy is finding a dermatologist that has even a clue about DH.

 

A diagnosis of DH is a diagnosis of Celiacs

 

I would suggest thoroughly researching .dapsone before you consider taking it .

 

 

Welcome to the forums 

 

edited to add:

I forgot to mention , you must have active lesions to be tested for DH, the doc needs to take the biopsys from the skin NEXT to the lesions not of the lesions them selves .

Monkeygirl1337 Rookie
Monkeygirl1337
Posted
  • Author

I been gluten free 18 months. I have a cross contimination accident and I was sick for days. My what ever it is bad and triggering by gluten.  It's all over my back and face.  Every time I get sick I appears. It takes weeks to clear. Nothing works.  You can't conceal it and its bad and looks digusting.  I am at a loss.  For a while before I knew DH existed I thought it was acne and tried every  acne product, but it makes it worse.  Hydrocortisone, and eczema creams don't work.  So if I have the rash/lesions I can be tested.  I know I have the gene its on both sides of the family.  I went gluten-free because of Dr. Oz and he didn't educate me on getting tested.  I had all 7 of the 7 signs of Celiac and I tried it.  I am a little scared about whats been going on in my body. I eat strictly gluten-free, but I eat a lot of gluten-free cookies, and crap.  I eat over the recommended to maintain a healthy weight, i eat 2300-2700 calories a day.  I have been eating healthy lately but the amount of food I eat scares me.  I am scared the damage is severe.  All of the men on my grandfathers side (6 of them) had celiac after they came back from WWII, and my aunt who has literally been self-diagnosed with EVERY disease on the planet *claims* she has celiac. Both my mother's side and father's side have multiple autoimmune disorders.  So I don't know if I am celiac but I can't stand the lesions.  Is this worth  investigating? I am SURE I have many of places to collect samples.  But I rarely eat gluten because I avoid it, but accidents happen every few months. Should I see a GI because I get SOOO bloated after I eat and going to the bathroom is painful and exhausting.  I just have spent SO much of my life being not understood by doctors and I don't know what to do.

irish11 Apprentice
irish11
Posted

Monkey girl....

 

I'm sure you have it....and im new here.....

 

I feel your pain grrrl..

 

I am a bit long winded....but you can check out MY odyssey....in the DH area....

 

Im STILL not diagnosed either...and miserable....and just getting off gluten...im still blistering...but not as much..

 

its going to be trial and error i think.....it will prob take MONTHS before i even know if its old stuff or new stuff i ate...

 

its a nightmare...they have NO IDEA about it....and you are not alone.....

 

docs dont understand it....(for the most part)...I myself am seriously considering setting up an appointment with

 

Dr. John zone in utah.....I need to talk to the head guy....everyone here is slightly clueless..and ive lost ALL patience....all.

 

dont know where you live but......are you next to utah?  im not....but i could fly in and out do an overnight and be back...

 

i have one foot on the plane in my mind...i know my odyssey aint over.

 

(((irish))))

cyclinglady Grand Master
cyclinglady
Posted

Have you read all the postings under our DH section? It might really help you.

Hang in there!

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      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
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      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
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