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!!
Comments
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!!
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
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.
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?
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.
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.
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/
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.
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
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.
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!
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.
Ng
Advice and information in UK is soooo limited about DH.
I have a doc appointment today because of the spots and itching on the tops of my feet and ankles, but also seems to be appearing elsewhere too. Not feeling too hopeful.
I have stopped drinking coffee and esting citrus. I take fish oil supplements and b and c vitamins.
Nothing seems to help.
I feel so low. It's really knocking my confidence.
Reading comments about sugar and dairy are interesting.
But what are you supposed to eat if you avoid grains, gluten, dairy, coffee, citrus and sugar????
Google a paleo or low carb diet. I've been very low carb for just over a year now- I'm lucky I can eat dairy,citrus and solanums, though I rarely eat fruit other than berries because of the fructose.
Did it because of high fasting blood sugar / pre diabetes. blood sugar normal now/ weight what it was as a teen, but all sorts of other things have improved/disappeared unexpectedly too including psoriasis, hunger, achey knees and feet and long term depression. Eating and cooking so easy now as I don't try to replace baked goods, pasta etc - just plonk a bit of meat/fish on some green veg and that's dinner and a handfull of walnuts or brazils is breakfast or lunch. I no longer crave the carbs or sweet stuff at all
I tried everything that I could think of / find to relieve the itch and the only thing I've found that actually works is "GLYSOMED Foot Balm" (over the counter). It's relatively ($9.00 Canadian), is effective almost immediately, goes a long way and actually works, at least for me. I do not know what is in it that makes it effective but whatever it is works very well.
Perhaps the best thing is it has allowed for me to cut way back on my perscribed 100 mg. daily Dapsone consumption (not a healthy drug) to twice a week, if that.
I hope this helps someone.