Treated DH with Roaccutan

[Alnlv]

From childhood i remember myself always bloated, unexplainable urticaria (hives) and mother supposed its lactose intolerance.

I was get used to “always-bloating” condition and thought it’s normal human body condition.

At 20 years manifested rash on sacrum, elbows, face.

I thought it’s herpes, I had vesicles. 
Acyclovir didn’t help. Dermatologist told its acne and I started Roaccutan for 1 year.

It treated me, so I can tell that Isotretinoin is good treatment for Dermatitis herpetiformis. My skin was perfect.

when I stopped Roaccutan, rash came back.

It devastated me since I’m young woman and want to be beautiful.

I started google in PubMed and found that herpetic rash have people with Celiac.

bingo! At this moment bloating issue and rash match up in my head and left only to make confirmation test for gluten antibodies TTG etc.

they were increased 5 times. And I started gluten free diet.

First time in my life I didn’t feel bloating. Rash subsided.

now skin clean and no stomach issues anymore. 
but! If accidentally I eat gluten - first what I have is urticaria after 15 min, more severe than ever I had. After 20-30 min I start bloating. and after 2 days of gluten exposure appear vesicles on eyelids.

Ig E also high. So I think I have DH and wheat allergy.

I afraid that one day on gluten diet my immune tolerance to wheat will decrease and I’ll have anaphylaxis. Because hives year by year become stronger. 

Who else have urticaria?

[trents]

Alnlv, welcome to the forum?

You suspect you have a wheat allergy? Do you mean celiac disease? It is not an allergy but an autoimmune disorder. tTG antibody tests are run to detect celiac disease. It is possible you also have wheat allergy in addition to celaic disease. High Ig E indicates allergies. Ig E reactions utilize an entirely different immune system pathway than does celiac disease.

[Alnlv]

Thank you.
is it possible to have urticaria in celiac disease? 

 

[trents]

Yes. The rash associated with celiac disease is dermatitis herpetiformis or "DH". It characteristically has blisters (vesicles) in the bumps. Most people who have DH also experience damage to the villi that line the small bowel, which would explain your bloating after eating wheat products. The kind of gluten that causes celiac disease is found in wheat, barley and rye. Celiac disease is the only known cause for DH. A small percentage of celiacs have only DH. They experience no small bowel villi damage.

You mention having tTG levels five time higher than normal. Were there other celiac antibody tests run? Can you post the results along with reference ranges used by the lab for negative vs. positive?

Normally, when celiac antibody tests are positive, doctors will order and endsocopy with biopsy to microscopically check for damage to the small bowel villi. This is for confirmation and is considered the gold standard for diagnosis of celiac disease.

[Scott Adams]

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[knitty kitty]

@Alnlv, welcome to the forum!

I have Celiac and DH (dermatitis herpetiformis) and I get urticaria sometimes.  

Urticaria can occur when you have a deficiency in Cobalamine Vitamin B12.  Cobalamine Vitamin B12 deficiency is frequently found in Celiac Disease.  Cobalamine Vitamin B12 can help remove histamine and reduce inflammation when you have a response to wheat that feels like anaphylaxis (high histamine levels are the cause of those responses).

Have you been checked for vitamin and mineral deficiencies caused by the malabsorption that goes with Celiac Disease?  A B Complex supplement is tremendously beneficial while recovering.

Niacin Vitamin B3 is another B vitamin that helps with DH and skin health.  Flaxseed oil supplements provide Omega Three fats that are good for skin health, too.  

Best wishes!

 

[Alnlv]

Thank you.

Yes I have done tissue glutaminase Ig A test only and it was five time increased. 

now I understood that it’s not enough for precise diagnosing,  I need to check Total IgA firstly. 
and indeed vitamins level.
 

[RMJ]

3 hours ago, Alnlv said:

Thank you.

Yes I have done tissue glutaminase Ig A test only and it was five time increased. 

now I understood that it’s not enough for precise diagnosing,  I need to check Total IgA firstly. 
and indeed vitamins level.
 

Since you already know that you have increased levels of tissue glutaminase IgA, I don’t think you need the total IgA test.  It will not add any useful information in your case.

 

[Scott Adams]

I would like to mention that a 5x elevated tTg IgA test result strongly indicates celiac disease, and if you were IgA deficient your result would likely have been much higher. In other words, being IgA deficient on this test would lead to lower scores, not higher ones, and might cause false negative results, but would never cause false positive results. This means that your next step should likely be 1) endoscopy to take biopsies to see if your villi are damaged; OR 2) go on a gluten-free diet for life.

[trents]

To add my 5 cents worth of advice to what RMJ and Scott have said, the total serum IGA test is only relevant in uncovering a cause for negative celiac antibody scores in the face of continuing celiac symptoms.