Dermatitis Herpetiformis

[Pamp8]

I'm new here, although in the past I know I've read some of the messages.   My doctor and I have long suspected that I have celiac. I have several other autoimmune illnesses. But, my celiac biopsy was negative, so I started eating a lot more gluten.  Over the last several years, I've had minor bouts of an extremely itchy rash that I was correlating to gluten, but it wasn't very bad and would improve in a short amount of time. Last year, I had a bout that was a bit worse, but it went away rather quickly, so I didn't think too much about it. Fast forward to this year. I have had a REALLY BAD case of it, for a few months, so I went to a dermatologist, and she diagnosed dermatitis herpetiformis without a biopsy. It was pretty obvious to her that it is dermatitis herpetiformis, but she said that if I wanted her to, she would do a biopsy. She said that I have just become more sensitized over time. She prescripbed Dapsone gel, which helps a lot, but I run out of it long before I'm eligible for a refill. So, I am going CRAZY. It is on my arms, legs trunk, everywhere, and it itches like chiggers. If I get even the slightest bit sweaty, it is so unbearable. I've been 100% gluten free since April, but it keeps flaring up. (I've been under intense stress, too.)  My questions are:  1.) Do many people have celiac without a positive celiac biopsy?  2.) How long will the dermatitis herpetiformis persist, even though I'm 100% gluten free? 3.) Is my story a common one?

Thanks so much!

[trents]

Welcome to the forum, @Pamp8!

As to your first question, it is possible to have only the epidermal form of celiac disease but it is not common. Most people who have dermatitis herpetiformis also have damage being done to the villous lining of the small bowel. 

As to your second question, most likely you are getting some gluten contamination from an unknown source on occasion that you are unaware of and are not suspecting. It could be something like in a medication or supplement you are taking or an oral hygiene product you are using or a spice you are using in your cooking. You might also look into a low iodine diet as iodine is known to exacerbate dermatitis herpetiformis.

As to your third question, many who suffer from dermatitis herpetiformis find it is a stubborn problem and difficult to completely control.

[Jacki Espo]

Hi there @Pamp8  yes I've had dermatitis herpetiformis and a negative test for celiac and a negative biopsy. I had stopped eating gluten before taking the test.  I have had an inconclusive genetic (?) test.  I developed the same all body rash.  It was one of the worst experiences of my life and I am sorry you're experiencing it.  What helped me: 1). I stopped eating oats of any kind. 2). I also took some anti-biotics that were not prescribed for dermatitis herpetiformis but I read they could help. 3). Salty food exacerbates it for me. 

Now I have a small flare up any time I get cross contamination like from french fries or a shared grill at a restaurant but it's not as bad as it used to be.  Wishing you relief soon. 

[knitty kitty]

Welcome to the forum, @Pamp8,

I stopped foods high in iodine, like dairy and eggs, kelp and iodized salt.  

I take Niacinamide also called Nicotinamide or Vitamin B3.  I haven't taken the tetracycline with it.   It seems to make the blisters disappear quicker.

I also use tallow balm, a cream made from beef fat, which has been used for thousands of years.  It is absorbed into the skin better than creams made from plants.  It helps prevent or lesson scarring.  See the study below.

Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide

"The combination of tetracycline and nicotinamide can be recommended as a useful therapy for patients where dapsone is not available or for patients who do not tolerate dapsone."

https://pubmed.ncbi.nlm.nih.gov/30390734/

[trents]

I would hesitate to recommend tetracycline or any antibiotic as a long term therapy option because of the negative impact it has on the gut biome. I took it for years as a teenager for acne and I'm convinced it was a contributing factor in my having developed celiac disease.

[Jacki Espo]

8 hours ago, trents said:

I would hesitate to recommend tetracycline or any antibiotic as a long term therapy option because of the negative impact it has on the gut biome. I took it for years as a teenager for acne and I'm convinced it was a contributing factor in my having developed celiac disease.

I would not be surprised if that is the case. I briefly took doxycycline and it cleared up but I also stopped eating oats at the same time so hard to say what did it. And I understand doxy is nasty stuff. I had to take it with yogurt because it messed up my stomach so badly. 

[Pamp8]

Thank you for all of these helpful answers!  I really appreciate them. I typically eat 2 eggs every morning, so I'm going to stop those, in case the iodine is an issue. And, I'm checking all of my medications and supplements for gluten. I will try some of these other suggestions, too. Thank you all. I feel like I have a little bit of hope that this can get better soon.

[DebJ14]

On 6/18/2025 at 10:03 PM, trents said:

I would hesitate to recommend tetracycline or any antibiotic as a long term therapy option because of the negative impact it has on the gut biome. I took it for years as a teenager for acne and I'm convinced it was a contributing factor in my having developed celiac disease.

Our son was put on Minocycline for his acne.  It did not solve the acne problem.  He developed drug induced lupus and pericarditis from it and missed an entire year of high school.  He literally went from playing football to bedridden in a couple of weeks.  His PCP tested him for genetic antibiotic resistance and he cannot take any drug in the Tetracycline family.  His gut microbiome was totally destroyed.  In fact he had a stool test done and had no good bacteria, whatsoever.  

What did fix his (and his brother's acne) years after the Minocycline debacle was when I was diagnosed with Celiac disease and the kids were tested.  They were both put on a Gluten Free/ Caesin Free diet and within a week both kids were totally free of acne.  The family has now been on the diet 18 years and no acne, except for a teenage grandson who will not adhere.  The big clue that he is eating gluten is that his face breaks out!