Help! Do I have DH?

[mrw824]

I think that I could have DH but my Dermatologist says it is eczema with edema. They did a biopsy but did not do a DIF on it. They also took the biopsy directly on affected and very inflamed skin. My Primary Care Doctor believes it is DH and wants me on a strict gluten-free diet for one month and to see her back. I have not had gluten in 4 days and not getting relief from the rash. How long does it normally take to go down once you are gluten free?

Does this sound like DH? It began about 6 months ago on my elbows, and it was very itchy, but I assumed it was eczema or dry skin. Then, it spread to my forearms, then my lower legs, and more recently my hip, near the top of my butt, my shoulder blades on my upper back (less severe there) and my hairline on my neck (also less severe there) and now to the backs of knee. It is on both sides of my body symmetrically- although currently only behind one of my knees.  Overall, it begins as a few clusters of raised, bumpy, inflamed red skin, then spreads out into more distant, spread out sores and blisters as it heals, then new lesions appear close by or a new location on my body and the process begins again. I cant get any relief. The itching is horrible and keeps me awake at night.

I just have a hard time believing that I could get eczema, for no reason at all, for the first time in my life at age 32 with this level of severity. But if it is DH, how come it is not responding to a gluten-free diet yet? Can anyone tell me about their experience with getting diagnosed? I feel like the dermatologist thinks I am crazy and just keeps giving me different creams, steroids, antibiotics and nothing is helping. If its not DH? What else could it be?

I would also appreciate any other diet tips, for example, I have read some about iodine and some about cornstarch. Anything else to look out for?

I appreciate all your thoughts! Thank you!!

Here are some pictures.

https://drive.google.com/file/d/0B1np6Oje1qRMNktiUGxYU1hPZW16SU0zZUoyQTZQUG1mX3ZZ/view?usp=sharing

 

[Scott Adams]

It certainly could be DH, especially since your doctor suspects it based on what they saw. Here are photos others have posted here:

and here are some articles we've published on this topic:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/dermatitis-herpetiformis-skin-condition-associated-with-celiac-disease/

When will you get the biopsy results?

[mrw824]

I already had a skin biopsy but they did not conduct direct immunoflorence which seems to be the only way to diagnose it. Anyone know of anything else that could cause this kind of thing?

[Franceen]

I had a very similar diagnosing experience back in 2004.  My PCP said "atopic dermatitis".  The dermatologist said same thing.  I was referred to an allergist, who was the only one willing to let me participate in the diagnosis.  I came from a family of doctors and so I did a lot of research with medical literature and textbooks.  I decided that it must be DH and the allergist was willing to read the literature I had found.  She agreed with me, and told me to go Gluten Free  About a month into the gluten-free (to my best ability) she had a specialist from Univ of VA come and do a skin biopsy.  The results were inconclusive (I was too much gluten-free!).  He too, only did a sample from a lesion.  So the inconclusive result did not surprise anyone.  At the same time my allergist prescribed Dapsone.  When that had a pretty quick response, she concluded that it was DH and made it an official diagnosis of Celiac/DH.  I took Dapsone for a few months until I got hemolytic anemia and then stopped.  I stayed gluten-free and rash free for 19 years!  Then, this past Nov I moved cross country and the DH returned with a vengeance.  I had to go back to the drawing board (more research!) and discovered that I had become complacent with the gluten-free diet - things had changed since 2005 - foods that were gluten-free now were not and vice versa.  UGH. That allergist was retired and on the other side of the country.  I went to a PCP here and got told that "50% of her patients had DH and were cured by taking L-lysine!"  (BS!).  She had never heard of Dapsone, and would not prescribe it.  She said that if I got a flu shot, it might help (BS BS).  She wanted me to see a psychiatrist and OB/GYN!!   So I found a dermatologist that had experience with DH.  He said he would not re-diagnose (thank goodness), gave me script for Dapsone and some really good cream.  Ordered bloodwork for the G6PD things and was seeing me once a month, now every 2 months.  The rash is taking a really long time to go away this time!  AGRAVATING.  Dr. said that it is almost impossible to be 100% gluten-free nowadays (my research proves that to be true too).  And he said new research shows that I might need to be on minimally effective dose of dapsone for a long time, maybe forever.     UGH.       Now, to answer some of your questions...…...

Iodine (extra iodine in the diet, from normal salt) can exacerbate DH.  But you need it to live.  So, it is good to use "non-iodized salt" for table and cooking.  Iodine is added to regular salt by mfg to aid health.  I use Kirkland "pink Himalayan" salt as they don't add iodine to that.  Or Morton's non-iodized salt.  

Time from gluten-free to relief:   Can take weeks or even a few months.  4 days is way too little to expect results.   That's why it is so hard to determine what the culprit was when you get gluten'd.  

Diet:  Cornstarch is a good thing on labels - it is a substitue for "modified food starch" and "wheat starch".  In USA "modified food starch" is supposed to be made from corn unless otherwise labeled.  HOWEVER, I have found that not to be true by calling/emailing mfg  They simply don't comply all the time.  

Other things to watch out for:  "Natural Flavoring" and "spices".  Wheat, Barley, and Rye are "Natural".  and "malt flavoring" is an all natural way to disguise sweetening - and it's made from barley,  Kellogs cereals almost all contain malt flavoring. 

Many spices are made with wheat for texture, etc.

Walmart's Great Value products are very glutenous unless marked "gluten-free" (I prefer "certified gluten-free").  

Cross-Contamination issues are what will get you frequently:  In your own home, plastic, silicone, Teflon, wood, paper all absorb gluten and it doesn't necessarily come out when washed.  You MUST have two toasters.  I had a 4-slice toaster with left side marked "gluten-free only" and other people never paid attention.  I use aluminum foil under all foods on pans that go in oven.  Toaster Ovens are a major source of X-contamination.  Gluten does NOT wash out of cast iron - so now all my pots and pans are contaminated.  I went and bought a set of stainless still.  ALL dishes and pots/pans go in the dishwasher (not cast iron!), hand washing doesn't remove much except the visible stuff.  

Restaurants:  Most don't practice procedures for x-contamination - so they are not gluten-free.  So far, Outback and it's sisters (Carrabas, etc) do pretty well.  Also Red Robin. Maybe Famous Daves.   I had a restaurant tell me what was gluten-free on menu and found that they rolled their baked potatoes in flour to make them crispy and not burned.  Most servers don't get it.  I caught a waitress take my hamburger away, pull off the bun and bring it back.  I just read an article (yesterday) about how Sushi in many places is not what it says:  many of the fish are actually made from imitation crab (which is often made from wheat).  And although not an issue for Celiac's other "exotic" fish are actually tilapia!

MSG is made on wheat starch everywhere but USA.  You don't know where they got it from!  Mexican food is always full of gluten.  Asian food is too (soy sauce is not gluten-free, unless it is certified.  I do not go to Chinese restaurants.   gluten-free pizza is not baked in a separate oven or on a separate pan.  Dominoes and Ledo are examples.  gluten-free pizza still may have flour on bottom.  

Elizabeth Hasselback's book (a bit dated, but still good) is a great reference on how to set up your kitchen, cook, etc.  

Wow, I could write a book.  If you google "Dermatitis Herpetiformis" and read some of the medical journal articles, you can learn a lot!  Meanwhile, I'll go back to scratching and starving to stay gluten-free!  LOL.  Best of luck to you.  I think you have DH, by the way from your pic.

A link to Elizabeth Hasselback's book:  https://www.amazon.com/gluten-free-Diet-Gluten-Free-Survival-Guide-ebook/dp/B0029XF9PM/ref=sr_1_3?crid=1VYQZMNK2BFK3&keywords=elizabeth+hasselback+book&qid=1557593527&s=gateway&sprefix=Elizabeth+Ha%2Caps%2C184&sr=8-3

Franceen