Dermatitis Herpetiformis
A celiac rash by another name?
© Can Stock Photo
Dermatitis herpetiformis is a VERY itchy rash (more on that below), but it can also be an important clue to solving your IBS puzzle.
If you have IBS symptoms and an itchy, burning rash, you may have celiac sprue disease or some other gluten intolerance. Dermatitis herpetiformis is a rash that is closely tied with gluten intolerance and… Gluten intolerance can cause IBS symptoms.
You see where I’m going with this?
What is dermatitis herpetiformis?
Dermatitis herpetiformis starts out as a burning sensation on the skin. Then itchy little blisters appear. These blisters often burst or get scratched open because the skin is so irritated and itchy. Be careful, this can lead to infection. While the blisters and scabs heal, new ones usually show up, and the cycle continues.
Dermatitis herpetiformis usually appears on:
- Elbows
- Back
- Buttocks
- Knees
- Back of the head
But it can show up in other places (such as hands). Often people that have this will get an instant diagnosis of excema.
What causes dermatitis herpetiformis?
One very common cause of dermatitis herpetiformis is a problem digesting gluten, which is a protein found in many grains.
In fact dermatitis herpetiformis is often called other names like celiac rash, or gluten rash. One reason I keep using the technical name is because gluten or celiac sprue are not ALWAYS the cause.
If you have IBS symptoms like cramping, chronic diarrhea, chronic constipation and also have the skin rash described above, there’s a good chance you have gluten intolerance or celiac sprue disease.
What is Gluten Intolerance?
© Can Bigstock.com
Whew! That’s a huge topic. Here is the short answer:
Gluten is a protein found in wheat, rye, and barley. That means it’s in bread, flour, muffins, etc., most beer, the list seems endless. It’s not in fruits, vegetables or meat (unless it’s added).
When a person has a gluten intolerance that person’s body can’t digest the protein (gluten). Instead, the person’s body attacks the protein (an immune system response). Because the protein is stuck to parts of the intestinal tract, the person’s bowels can be irritated, inflamed and damaged by eating gluten. This can lead to all kinds of IBS symptoms. It can also cause anemia and other vitamin deficiencies because the damaged bowels don’t absorb food properly.
IMPORTANT: Don’t stop eating gluten right away unless your doctor tells you to. There is a test for gluten intolerance. The doctor can run tests for certain antibodies (part of the immune system). If you stop eating gluten for a while, then get tested, the test will say you don’t have the antibody.
Many people don’t have these gluten antibodies, but still have problems with gluten! AFTER your gluten antibody tests, you can try a food elimination diet or food challenge diet. In other words you can try completely avoiding gluten for a little while and see what happens. Some people’s symptoms clear right up, other people continue to have problems.
Sorry, I guess that answer wasn’t very short after all. Take heart, it could have been MUCH longer :).
What can you do about dermatitis herpetiformis?
© Can Stock Photo
If you try a gluten challenge diet (eliminating gluten for a while) and the rash goes away; then try some food that contains gluten and the rash comes back… Well that’s probably your answer. The gluten is the problem. If that happens you’ll probably have to permanently avoid gluten containing foods. It’s probably a good idea to work with a dietitian so you get enough vitamins and minerals, etc.
If gluten was causing your IBS symptoms, and those go away too, so much the better (I haven’t eaten gluten for years!).
Otherwise… There are other kinds of food intolerance that can cause a dermatitis herpetiformis rash or something that looks similar. These foods may also be causing you stomach or bowel upset. Your best resource to figure all this out is your doctor. If your current doctor “writes off” your symptoms, you may need to find another one.
There are also medications, and antibiotics that your doctor can prescribe to help this agony. That’s why it’s important to find a doctor who takes celiac sprue or gluten intolerance seriously.
Dermatitis Herpetiformis Statistics in the United States:
In the U.S. it is estimated that:
- 1 in 10,000 have dermatitis herpetiformis
- Men get it twice as often as women
- White (caucasion) people are much more likely to get dermatitis herpetiformis than Black or Asian people.
25 Replies to “Dermatitis Herpetiformis”
I have the rash and bloating, tired spells, muscle aches, everything. I’ve been dealing with this 6 years and nobody has every suggested Celicas. I wish I could post pictures, I have taken lots to my dermatologist, my urologist/oncologist and GP. Now that I have found these pics of Dermatatis, I’m sure I can convince this, this is the culprit! Would you like to see pics, just let me know.
Thanks
Is it possible that I have DH without having blisters at all?? I notice that my rash gets worse after eating wheat products. But i don’t get blisters and I don’t have the rush on my knees and elbows scalp or face. I mainly have them in my inner upper arm..behind shoulders…and the most on my buttocks and back of thighs… they itch the worse after bath/shower and in the morning upon waking up. It is been going on for four months now – and I still have not been diagnosed :(
Have a rash on my lip linner that itches and burns and it seems to come when I have a flare up with my IBS it itches and burns and little bumps. I just don’t know
Omg i thought that I was going crazy I have the same thing it’s around. My lip liner it flares up when my ibs does but the little bumps always stay around the lip liner but you can’t see them there the color of my lips. But when my ibs flare up they itch and around the lip liner burns. Went to the doctor they was like you have contact dermatitis, then went to different doctor said you have atopic dermatitis. But I told them how it flares up with my IBS I guess I need some new doctors.
I am on a gluten free diet since a couple of months as suggested by my doctor & the rash has not improved .It’s worse in the sense that it is more itchy & burning.It hasn’t spread but I’m certainly more uncomfortable.Are there other causes for dermatitis herpetiformis?
I got worse when I ate gluten free too. I discovered it’s actually just grains and rice is the worst.
Has anyone ever had a rash around their mouth? It is red and extremely irated. I have been perscribed antibiotics and antibacterial sauve.
True DH is not affected by antihistamines or a low histamine diet, as the cause of DH is an autoimmune reaction caused by the protein in gluten and the way your body processes it. There are blood tests that can be done to check histamine and mast cell levels. To diagnose DH, a skin biopsy must be performed to check for a certain pattern in the IgA. There are blood tests for celiac, but they are not always definitive. Also, the DH rash tends to be symmetrical, and though often appears on the elbows, knees, scalp and back, it can appear other places, including the hands, neck, groin/pelvic area etc. DH is uncommon and it can be difficult to find doctors who are experienced in diagnosing it. Especially since there seem to be similar rashes related to gluten intolerance but unrelated to true DH/celiac disease, which is neither an allergy or an intolerance, but an autoimmune response that can have serious consequences if not properly diagnosed and treated (which consists of a strict gluten free diet)
In addition to avoiding gluten, I suggest a low-histamine diet as well. (you can search online for specifics) That has helped me immensely.
I too realized myself i had a wheat allergy after using one slice of whole wheat bread every day for low carb weight loss for four years in 2010/11.
I eliminated whole wheat for 3 weeks and could tell it was better not cured.
About 6 months later I gave up all wheat, beer, cookies etc. and i still have scars but have hope they can heal as i’ve noticed most allergy rashes come from inside and do not have to heal from the outside just from the inside.
Latest: went to allergist and he says i dont have an allergy. WHAT?!?
Once in awhile, those hard itchy blisters will erupt even if we don’t remember any gluten in the diet, but we HAVE found a way to keep the itching to a minimum and help the blisters go away sooner: use that “Nu-Skin” type liquid bandage (it smells like Super Glue). Twice or three times a day usually does the trick. No idea why, but maybe the blisters thrive on oxygen? Kind of like chiggers do, perhaps, which is why we always “painted” them with clear fingernail polish when we were kids.
Anyway, maybe this idea will help others. It sure has been a lifesaver here!
I have had IBS for years. About 2 yrs ago I started with this horrible rash that would come and go. I saw several Dr’s and Derm’s. They tested me for everything you can imagine and just kept saying Lupus. There is no test for Lupus, they just rule out other things so I will definitely be mentioning this next time I go in.
I admit I don’t know much about lupus rash, but I just read about it, and it seems it CAN come and go. Did you do some kind of allergy testing with them, or did you you do a food elimination diet? Anything like that? One kind of lupus rash is the facial butterfly rash. That’s a pretty telltale sign of lupus, from what I’ve read. Keep trying. It’s YOUR health. All the best – Shawn
Thanks for the information. I was diagnosed with IBS a year ago and left on my own. I have gotten help from Heather’s IBS web site and the book Wheat Belly as well as other articles about gluten free foods. It’s an up hill climb. But thanks for clearing up the itches i have on my head and hair-line and hands. A dermatologist was not able to help me.
So it actually helped clear up the itches Berta? That’s GREAT to hear!!! – Shawn
Can this come on all of a sudden? I’ve never had a problem before but the last couple of weeks i’ve suddenly had the rash on my neck, underarms, legs, chest, etc. Its driving me nuts and it certainly seems worse after eating wheat products
Hi Lily, sorry you’re suffering.
Please make sure to read this comment all the way to the end :)
Everything I’ve read about dermatitis herpetiformis indicates it’s a reaction to gluten, and wheat is probably the most common gluten containing food most people encounter.
Celiac, or coeliac (depending on where you’re from) is caused by a genetic problem. I was just reading that if you have the genes for it, celiac disease can be “activated” by surgery, pregnancy, childbirth, viral infection, or even severe emotional stress!!!!!
So that makes it sound like dermatitis herpetiformis could suddenly start happening.
HOWEVER! There can be all kinds of other things that are more likely to cause a rash. I would strongly suggest going to see you medical professional before changing your diet (which is a real pain in the butt).
All the best – Shawn
Thank for the information!
I have this type of skin problem with tiny blisters apearing. It’s on my hands and between fingers.
I’ve tried few doctors but no joy.
always been diagnosed with something else.
On next visit I’ll try to go to dermatologist and will show him this website.
cheers
I think you’re on the right track with a dermatologist, Mike. Good luck! And thanks for the positive words.
I just came across your website the other day. What an eye opener! I was diagnosed with IBS a few months ago after suffering for some time with bloating, incredible pain, constipation etc etc – you know the drill. More recently (the past 6 months) I have been suffering with an itchy rash on my neck and bottom of my jaw line which flares up for what seems like no apparent reason. The doctor said it was most likely eczema and gave me some steriod cream for it but it didn’t do anything. I wonder if the two are linked then? I have recently moved to British Columbia, Canada from Scotland with my husband so we don’t have a doctor yet, but having read this I think I’d better get one asap to get this checked out. Thank you for this post, I would have never thought these things might be linked (and the tiredness, the hayfever, aching joints etc etc). Isn’t the human body a curious thing? ;)
Yes. Curious indeed. I hope you get the help you need Helen! Good luck settling in.
Ask your doctor to try Dapsone (antibiotic) used to treat DH .
You will get relief but need to stay on gluten free diet. Also will need blood test to monitor liver function initially. I’ve struggled with DH but recently started Dapone … Feels like a miracle !
Thanks for the Info Shell!
Wish I could find some relief rom this Dermatitis Herpetiformis. It’s just painful and sooo ongoing. My doctor seems to be just beside herself with the knowledge of helping me with this skin disorder. Please Help. Thank You.
Sorry that you’re suffering. That sounds miserable. Dermatitis herpetiformis is frequently linked to gluten. Have you and your doctor tried an elimination diet for gluten? What about tests for celiac sprue? I hope you get the help you need soon. If not perhaps you need another doctor to look into it with you.