Saturday, January 15, 2011

Dermatitis Herpetiformis...

If you've read my story, you know that when I first learned about Celiac, I thought for sure that it's what I have. I've been tested by blood test multiple times, all negative, and of course as you know I have been diagnosed with Crohn's. My remarkable recovery with a gluten and dairy free diet alone has always hinted towards the fact that I probably do have Celiac despite the Crohn's diagnosis, and actually, many Crohn's patients do also have Celiac. The one thing that made me really think that I did have Celiac was the recurring rash I used to get. It's an intense rash, your skin starts to tingle before the rash breaks out, then once it does, the itch is insane. Clusters of little bumps appear, you scratch, the skin breaks, weeps, burns. It's awful. Sorry if this is TMI but hey, this website is full disclosure!

Well I have had multiple doctors check the rash but they always say they don't know what it is. It's clearly a reaction to something they just don't know what. The problem is, it comes and goes so quickly that by the time I get to the doctors office, it's barely there for the doc to check out. I've done extensive research regarding types or rashes, but the only one that matches my symptoms exactly is Dermatitis Herpetiformis - the Celiac rash.

When I was undergoing treatment for Crohn's, the medications I was on cleared up the rash and I didn't see it for over two years. I thought it was gone for good but once in a while I'd feel that familiar tingle again. Recently I shared with you all that last year was a bad one diet wise and that I had been cheating on the gf diet. After about 6 months of this, the rash started to re-appear. It was mild at first and back in November I fully recommitted to the GF diet. In general I started to feel better right away and still do, but the rash persisted and when I started taking birth control pills it went out of control. It was just within the last couple days, in the middle of a major flare, that I decided to stop taking the pills as I started researching DH again and found that oral contraceptives can definitely exacerbate the rash. I know it was the pills because it got better during the week off of them and then the first week back on again the rash went nuts after about 3 days. I have been strictly gluten free for a few months now but the rash doesn't necessarily clear up right away. Needless to say I'm enormously frustrated with myself for cheating.

While researching DH, I discovered that it's caused by deposits of IgA antibodies on the skin. This sparked my memory of my very first Celiac panel. I was also in a mild flare of the rash at the time. The numbers were all within normal ranges, but the doctor had made a note on the report that my IgA levels needed to be monitored. I believe that my levels were in the high end of the normal range but I can't remember exactly and I can't find the test results. If the doctor had been looking at this as a DH test rather than a Celiac test, in combination with the rash, I believe this would be a positive result. Of course, just like all other Celiac tests, these don't ever seem to be 100% accurate. So frustrating!

I have appointments with both my docs in March. The plan right now is to stick to the gf diet, move forward with the Paleo diet and stay off the pills. Hopefully it will get better, but if it doesn't, then I'll make an earlier appointment and see if I can get in to see a dermatologist. Seriously, autoimmunity never ends does it?! It's a struggle, but I'm not letting it get me down. I've still made major progress, despite a few steps back. I'm just so glad to have this support community. I reached out to others with DH this week, read forums, articles, anything I could find. There's no doubt in my mind that I have DH, which means I do in fact have Celiac. I'd go back for more testing, but will it make a difference? No. I'm already GF anyway and there's not much else they can do. Just keep pushing on!

If you have any experience with DH I'd love to hear from you! Leave a comment here or email me - jen at alifeofsugarandspice dot com. And as always, THANKS for reading and for your support!!! The response to this site lately has been amazing and more and more people are spreading the word. I really appreciate it!!

20 comments:

Heather said...

My daughter had dermatitis herpetiformis.

Now gluten-free, that rash is gone but she has eczema and a lot of severe allergies.

Have you ever thought about testing for celiac through Entero Lab? That's what I recommend to people, because the blood test gives false negatives 65% of the time. That's what I would call a completely unacceptable means of testing people, because more than half are given an all-clear yet actually have celiac.

I have a friend with a little girl who has all the symptoms of celiac, even dermatitis herpetiformis yet her blood test came back negative. Luckily my friend still keeps her daughter off of gluten (if she doesn't, her daughter has severe symptoms that are impossible to ignore).

Good luck to you!!

Heather said...

Oh and I didn't meant to say that you should ignore symptoms ever, I just meant that the symptoms are very severe for my friend's daughter so she knows to keep her daughter off of gluten, despite the test results.

I had DH as well, but it was not my only symptom and it was sporadic but after my daughter was born and she had the same rash - I was really confused! It all made sense when we were diagnosed though.


If you have any questions about DH you can contact me! I like your blog! :)

heacollins (AT) gmail (DOT) com

Anonymous said...

So glad to have read this article. I,too, have been suffering from what I believe is Dh. The rash came and went for years and at the time, I didn't link it to gluten... not until now.

It would start with the feeling of being stung, like a deep sting or burning pinch. I would know when a lesion was about to develop due to the pain. sure enough, when it formed, it was intensely itchy and painful and would burst open in the middle and burn even worse with the feeling of a throbbing bruise. The lesions always leave behind a purple scar that takes forever to fade. They show up symmetrically on both sides of my body usually.If they were on my left leg, they would also be almost identical location on my right leg, etc.

With the rash, came a whole slew of other symptoms. Constant bloating, weight loss, inability to gain weight, malnourished ( nails cracking, dry hair, acne, dark circles under my eyes) diarrhea with undigested food after eating gluten, multiple pale mouth sores, exhaustion, etc.

I fully believe I have celiac disease. When I did a test run gluten free, I was shocked at how dramatically i changed from the inside out. it was as if a magic spell had been broken and the body of pain and damage was being reversed and I actually am starting to look and feel like my old self again. The rashes have faded dramatically and only one or two crop up now and then. everything else is changing.

I don't see that I would or could ever put myself through being poisoned again to get validation from the doctor to tell me what i already know is true.

Coley said...

Here I am crying and awake in the middle of the night. I've been keeping strong, but tonight it's just terrible and getting to me emotionally.

I've had test after test after test tell me that my hellish rash is not DH, I do not have celiac, and gluten is not to blame.

Last year in late September, I had a huge water blister appear on my right temple. No rash, big like a penil eraser, little did I know my life was about to change dramatically.

I have an intensely itching, burning, blistering rash - in between the blisters is itchy, painful burning red, raised "hives" even though they're like no hives Ive ever encountered. THey're big, like continents instead of bumps.

Doctor to doctor to doctor, endles, endless copays, I was controlling the devastating rash with prednisone and dapsone. My rash did NOT come and go, it is constant. Is that ever DH? It is always constant without treatment.

So, I've been on some sort of treatment since November. The higher my dose, the better. With 150 mg dapsone and 70 mg prednisone, my rash was gone. The scars and scabs were starting to heal and it was wonderful, but I knew being on those medications long term was not safe. Here we are in July... still no cure. I have weaned very slowly off of the prednisone. Dapsone is working, but at only about 85 percent. I still continue to break out daily on my face with blisters. I'm ugly, but still, I can live my life. I have other symptoms, waking up every morning with stomach pain, but whatever... no one knew wtf was wrong with me and at least life was tolerable.

SET IN: Sunday, July 3rd 2011. I discover I am pregnant. I must stop the dapsone. So here I am... my rash has only intensified since and I'm crying, unable to sleep at 4:39 am with my scalp, back, neck erupting in blisters, so itchy that I want to pull out my hair (Did I mention that it seems like Ive lost over half of it? And the other half has broken off so I look like I have a mullet?)

I'm completely devastasted. Finding your post makes me think I should just go gluten free, in desperate desire to help myself. How will I survive this pregnancy? Should I get the "a-word".. yes, it's so unliveable in the middle of this night I've considered getting an abortion - even though that is NOT WHAT I WANT - as a woman with 2 other children happily married over 10 years to my husband, that is NOT what I want... but how will I survive this?

Ter said...

I've had a rash for almost 2 years I have no health insurance. My bf's dad (an endocrinologist) diagnosed me with hives. He told me to take h1 and h2 antihistamines together- zantac and zyrtec and told me to get blood work done to see if I have a thyroid problem.
This combo of drugs works for me to control the itch. But at it's worst, I would be taking 6 of each per day! After 3 months with this antihistamine regimen, I was still breaking out and I began having diarrhea. Daily. As miserable as the proceeding 3 months had been with the GI symptoms, plus the rash.. it was something of a blessing in disguise. I now had the 2 symptoms to google together and Wham! Gluten intolerance came up. I spent whole days online looking into it. Of the 250+ associated auto-immune diseases that can come with the gluten intolerance, I know my immediate family has a huge number of them. Diabetes, food allergies, eczema, migraines.. My older sister even has Turner's Syndrome! I learned that Turners and Downs Syndrome patients are way more likely to have a gluten intolerance- and so are their immediate family members. Another thing that really surprised me, pouring over the celiac message boards, is how many folks (in the US) are not being diagnosed in a reasonable amount of time. I called my sister, who has had a rash of some kind for more than half of her life and she told me that her doctor says it's eczema and has her on some prescription cream.
Even with my boyfriend's dad, the Endocrinologist's diagnosis, he wants to look at my blood work and see if I should be on drugs to regulate my thyroid!
I then look into gluten intolerance and thyroid issues to learn that the thyroid problems can be a RESULT of the gluten problem!

I have been gluten free for a month now. My GI symptoms went away in about 2 days. The rash has flared much less often and today it is far less itchy and has almost disappeared completely in some places. I have been off dairy for the last few days and that seems to be a huge help. I am being patient. I do miss beer a lot! Not many places have g-free beer yet, but I've been giving out a list every place I go, now. My friends have been amazingly supportive, now that my symptoms have almost disappeared after going off gluten. But for a while, during the worst of it, they all said, "Go to the doctor", "Go to an allergist", "Go to the dermatologist". They really had no idea how unrealistic it is for someone (in the US) without insurance to just go and drop $300 on an initial office visit, with tests and diagnostics costing upwards of $3k. What I have learned and what I hope to leave you all with is this; It can't hurt you to just remove gluten from your diet. You CAN diagnose yourself. Go off gluten completely and see if you heal. Be patient. Eat a lot of Mexican food. Stock up on Udi bread and hamburger buns. Throw out all your cereal and processed foods and feel better. I had no idea how depressed I was until now. Nearly symptom free now, I can't believe I lived for 2 years with an itchy rash and diarrhea! It's madness!
Doctors and insurance companies in this country can't make any money off of you by telling you to go off gluten. Healthcare in the US is a for-profit venture. I still see some folks on the message boards saying to get tested for Celiac. "Get bloodwork, get a biopsy!" "Only your doctor can diagnose you"... If you have the means or the coverage, then go crazy. But don't expect the correct diagnosis until Glaxo-Smith-Kline stands to make a buck from your taking a pill.

Anonymous said...

Hi my name is Orla.
I've had the rash for 5 years on and off for 2 and constantly now for 3. It is the most insanely itchy, bumpy annoying rash ever to exsist!
My GP really hadn't a clue what it was. He gave me anti bacterial scrubs and creams along with anti biotics all failed miserably.
I brought the suggestion of dermatitis herpetiformis to him. He said there's no way it could be this, that its definitly a bacterial skin infection, despite 3 full weeks on anti biotics!!
Eventually a dermatologist was suggested, by that stage I had decided to cut out wheat and gluten and low and behold the rash cleared up! By the time the dermatologist came around there was little of the rash left.
It absolutely infuriated me that I was left waiting almost an hour and was seen and diagnosed in less than a minute. Her diagnosis...psoriasis. I could have screamed at her!!!! Idoit!!!
Went back to my GP furious at her diagnosis. He then told me that my thoughts of dermatitis herpetiformis were correct. The internet is a very helpful thing!! It diagnosed my CD.

Anonymous said...

I've been gluten free for a long time, mostly dairy free also. But I still have flare-ups. On the weekend I baked a wonderful rhubarb crumble (GF of course) and for the past two days I've had a nasty flare-up. I am now highly suspicious that it may be triggered by sugar. I don't consume much sugar but I'm thinking that when I make a dessert with sugar I have a problem. Nobody so far that I see has ever mentioned sugar. Anybody?

Anonymous said...

Iodine can somehow irritate dh. Throw out your potato chips, your salt shaker, and your shrimp.as if we are not limited enough. See if it helps. Good luck I know every day is a struggle but being healty is worth it to me. Take care.

Anonymous said...

Years of being undiagnosed and my rashes being ignored or being treated as contact dermatitis or eczema right here. I've been three years gluten free and didn't think of mentioning that I might react to iodine (helps trigger DH) for surgery and look what I got: http://imgur.com/cQ5Ka,9IcGo#0
owee! I was sent in to the dermatologist right away and was given topical steroid and topical dapsone. Yay! topical Dapsone. I never wanted to be on the oral Dapsone but this topical stuff (technically it's Aczone) is VERY helpful, fyi.
http://disasterkitchen.wordpress.com/2011/12/05/my-blood-test-was-negative-therefore-i-dont-have-celiac-disease/

Anonymous said...

Started last August with a severe case of skin outbreak. Off to urgent care and a couple of rounds of prednisone.To an Allergist and then a Dermatologist. Skin biopsy diagnosed with contact dermatitis.
Patch testing too. List of products that I could use. After 1 year I started to put things together. Not a beer drinker but at the ballgame I would have a few cold ones. The licorice for inside the statium. I am now 2 weeks gluten free. Bumps are starting to fade and no more horrid itching. We have to watch out for things like hair gel that have wheat in them too. Who would have thought.

Melanie said...

To anonymous who has a reaction to sugar,

I do too! The dermititis herpetiformis comes out when I eat anything with sugar. I could never find anyone else with this reaction so I am guessing it is rare, but happens. I also react to vinegar and when I used to eat gluten. I have
Celiac- asthma, which came on 4 years ago. Before that I was an athlete/ dancer with absolutely no health problems.
This is a hard one to heal but I am very hopeful I can get off the inhaler. It is like a puzzle and I pray I can find the last piece.
Good luck to you all
Melanie

Anonymous said...

I've been suffering from various ailments the past 15 years and been to many doctors without success. I've had chronic congested sinuses, hypothyroidism, aching joints, phantom pains in my lower right abdomen, rosacea and anemia. I finally consulted a nutritionist who thought my problem might be Candida, so I have been following his Candida diet for over two years with limited success. While on the Candida diet some of my ailments improved but the constant chronic sinus issues still persisted. This past November Super Storm Sandy destroyed the lobby of my apartment and forced me out of my home for 8 weeks. During those 8 weeks I suffered a blistering mystery rash starting on my lower back and hips, then spreading to my thighs, calves, arms belly, chest and shoulders. Three trips to the dermatologist and all I could do was scratch and watch it spread. They first thought it was contact dermatitis, then stress, but nothing they prescribed helped. It wasn't until my mother suggested it might have something to do with my hypothyroidism and I googled it that I came up with DH. I'm sure that's what I have. It behaves exactly like all the descriptions I've read. Four years ago I had ended up in the hospital with a perforated colon - another mystery that was never solved. At that time I suggested that my internist test me for Celiac's and the test was negative. I naively assumed the issue was closed at that time. Of course, now with an active rash all over my body I went back to both internist and dermatologist and had both blood and biopsy tests. I made sure to continue eating gluten until that day to try to get a positive result. Both doctors told me I don't have Celiacs because the results were negative (despite slightly elevated IgA but still within normal). I then went off gluten. It's been two weeks now and the rash is much less itchy but I do notice that it flares up when I have dairy and sugar. I also feel my sinuses are less congested, although still far from normal. I'm thankful for contracting DH because I would never have known the damage I've been doing to my digestive system if not for this rash. It keeps me on the straight and narrow. I have an appointment in April with a Celiac specialist. I'm hoping I don't have to go back on gluten at that time. Perhaps getting a positive diagnosis isn't that important now, but I'm going to give it a try.

MJ said...

So happy and relieved to find this blog. I just returned from the doctor's office with a negative result after testing for Celiac Disease. I've had a rash for the past 3 months that totally fits the description of DH. My dermatologist's PA did a biopsy, but even after telling her I suspected it was DH, it's not what she tested for and it was not done in the correct manner for determining DF. SO frustrating! I'm beginning a gluten free diet and hope that gives me some relief. I've also just finished some food allergy testing (don't have the results yet) and am going to see a naturopath. Has anyone else has a reaction to alcohol? Vodka and some red wines set my rash on fire within minutes.

Cass said...

I get the DH rash when I eat sugar. It's usually only on my left hand. when I google "hand reflexology" and look at where the blisters are on my palms, I know which organs are being affected by mast cells.
There is a natural substance called quercetin that can prevent the rash and for me if I take it in time, cuts the rash reaction down time ways and the blisters do not itch and dry up VERY fast. If i get a DH rash and I take Quercetin, my rash is resolved within a few days.
I need to be more dilligent with the sugar. I do not eat wheat, dairy, night shades, salicytes and other grains. Sugar is just another thing I need to avoid.

Anonymous said...

Omg, this is the first description of a rash that sounds like what I have had the past year. I'm going to google celiac and DH now!

Anonymous said...

I am surprised that doctors don't know more about DH. They say it is so rare so it is not very likly that you have it... But probably that is why so few are diagnosed with it.

I told my doctor that I get rashes when I eat or drink something with milk. He told me that it is very unlikely that I have milk allergy because I am an adult.

I've been tested for celiacs, but no positive results. Still all the symptoms for it. And althoug now on gluten free diet for two months, I react to milk.

And reading abuot DH I see that this is quite normal, because of the iodine in milk. And that it may pass in a couple of years. But why can't doctors see the conection: celiac symptoms, rash, reaction to milk -> DH???

It has taken me ten years to figure out this by my self!

Happiness Factory said...

Hi

Thanks for sharing.

I'm from southern part of India.


CD is unheard of here. Most GP Docs don't even know what it is. I have been having acidity like symptoms from my childhood I'm 44 and have been poping pills for acidity for 20+ years. Right now on esomeprazole 40 mg/day. I have allergic reactions also from childhood. I have been on cetrizine/Allegra and the likes for more than 13 years now. I have been having itches and bumps on and off for last 15 years mostly on the upper body, back and outer biceps. I'm lean and have weighed 50 kgs till 15 years back, now I'm 62 Kgs for 5'7" frame. For last 1 year itching is unbearable. I went to many dermatologists, they gave me steroid creams/pills, which I stoped, and was aplying calamine lotion twice a day for last 6 months. Little effect.

Thanks to Dr.Google I was able to find a possible cause - gluten. I am abstaining from GD for last 1 week - presto - the itch is gone. My IgA is 270. I've given for tTG-IgA. Waiting for the results.

Anonymous said...

I am so happy to have found this page! I have had this same rash, as you have described, for over 20 years. Too many numerous trips to the dermatologist to mention. Every cream in the book I have tried, with no change. They said it was eczema, or atopic dermatitis. But when I look up pictures of my rash and descriptions, it looks just like dermatitis herpetiformis. This last year went to the doctor for several tests I requested including celiac tests and thyroid. So everything came out normal. I was considering going gf before, but lost incentive with my test results. After having a bad episode this week, I was looking up false negative test results. Reading this and other posts has been so eye-opening. I am starting a diet of gluten- free, dairy free, and also sugar, as I believe that is also a trigger for me. It's too early to tell the results, but I know this is the direction I need to go. Thanks again!,
Ng

Anonymous said...

I have been struggling with health problems over the last couple of years. Rashes and body pain. At first I thought it was some sort of tick disease but tested negative for those. I saw many general practitioners, a rheumatologist, dermatologist and no one had a clue. I have recently discovered that sugar may be the culprit. Any time i eat anything with refined sugars in it, i get pain instantly throughout my body, mostly in my hands arms and joints and i will have eczema break outs over a couple of days following. When i stop eating sugar, the itchiness practically disappears. I guess i need to go to an allergist to see if i am allergic to sugar or any other certain foods. I know that it is possible to have a sensitivity even if you don't have an allergy. I did read about one commenting about boils and other issues. My sister is believed to have Lupus and she has IBS, boils, and hair loss.

Anonymous said...

Wow!! So glad i found this! I have had mysterious rash that appears off & on on my lower back w/pain at 1st, then next day extreme itching & fluid filled blisters, then scabs over & may not appear again 4 a month 2 up 2 6 months. Have ibs w/extreme belly pain at times then diahrrea & constipation 2. The pain is so bad sometimes that ive gone 2 the er only 2 b sent home with no dx:(