If it's DH, do I have celiac disease?

[Baby Blues]

Hi everyone.  Brand new here and first post.  First of all, thank you Scott and moderators for all the work you do. 

About 10 days I "broke out" on my chin, which I thought was strange but blamed mask wearing for what I thought were pimples.  Then, it spread under my chin and down the front of my neck on the right side.  It had the severe burning itchiness of poison ivy, which I had been exposed to the previous day, so I tried using Benadryl gel on it.  That caused a painful caustic sensation!  Next, I thought of shingles, as and it followed the familiar pattern for shingles, so I  began treating it with antiviral medication.  Over the course of a few days, small red bumps with blisters that oozed and eventually crusted over began appearing on my forearms, upper arms, thighs, groin and ankle.  The itching was unbearable.  In addition, both elbows have red bumps on them, but they haven't blistered or weeped.  Out of desperation, I made an ointment out of Cortaid (1%) and a crushed acyclovir tablet.  It seemed to help temporarily but the painful burning itching persisted and more bumps keep appearing. 

Last night, I began researching and found images of dermatitis herpetiformis that looked like my bumps.  When I read that DH is a sign of celiac disease, I began reading about that.  The dots started connecting (no pun intended).  I had had a severe case of diarrhea after drinking a wheat ale a few days before the red bumps began.  I've also had greasy stools and a huge bloated and distended lower abdomen that won't go away for the past ten days.  I am thin, can't seem to gain weight.  My diet has included more bread than usual as well as a few more beers (I'm not a heavy drinker). 

So my question is:  what should I do first? Should I see a dermatologist or ask my PCP for a specific blood test? Any advice is much appreciated.

[Baby Blues]

I should add that I have had GI issues for a very long time (45 years or more), including chronic diarrhea, bloating, frequent gass, etc.  Also have depression and anxiety for which I'm taking 300 mg buproprion HCL.  I take loratidine daily for environmental allergies. 

[trents]

Everything you list as symptoms in your two posts screams celiac disease. Ask your primary care doc to order a celiac antibody panel. The most important test is the tTG-IGA so if he/she is not willing to order the full battery then insist on that one. It is the most specific for celiac disease but the least sensitive of the IGA tests so the full panel is better: https://www.imaware.health/at-home-blood-test/celiac-disease-screening

Don't hesitate to walk your physician by the hand with regard to diagnosing celiac disease. Most of them are woefully ignorant of the disorder. Everyone on this forum will attest to that. You will likely need to become your own advocate in this matter.

Edited May 17, 2021 by trents

[Scott Adams]

At the same time you're working to get your blood panel done you should also ask your doctor to refer you to a dermatologist to get a biopsy for DH. You may need a prescription drug to deal with the symptoms of DH, if that is what it is, although a gluten-free diet should, over time resolve the symptoms.

[Baby Blues]

Much thanks to both of you, Trents and Scott.  I will be sure to follow up.

[JenniK]

I’ll share my experience with DH and shingles, just FYI. I have been diagnosed celiac by a GI and have had maybe a year or more of constant DH before i went gluten-free for my stomach issues. (Self decided to try to see if gluten-free helped that.) Well, what a surprise that in addition to all the other symptoms disappearing, all the acne like bumps on my back went away!!! After getting better, i frankly forgot about the strange back acne, and never connected it to food. (Shrug. Maybe because no doctor ever mentioned food either.    ) Later, after years of gluten-free, then a 5 week gluten challenge test to see if I had healed what I thought was leaky gut or IBS, all symptoms returned (diarrhea/ constipation, canker sores, DH, arthritis, fatigue, vitamin deficiencies, nerve pain, vision changes...) The kInd GI I saw diagnosed me as celiac without even the need for the endoscopy. He said i had all the classic traits, and we could do the endoscopy, but he felt it unnecessary.  Honestly, I left that appt feeling conflicted by that, but now i am thankful that he was willing to be honest with me and spare me time and money.

(I’m getting to the DH/shingles part.) 

in the years right before i got desperate enough to try gluten-free on my own, i had a lot of weird symptoms for someone so generally healthy (early 40’s, acrive, good weight, exercised, etc) one of the strangest was that i had shingles  recur 3 or 4 times over a 3 year period. Now, my shingles were almost completely internal, meaning there was very little to see, but the nerve pain for like my skin was scraping against a sharp jagged edge at all times. It really hurt!! Mine wrapped around my hip/ buttocks and into my private areas. (Fun!)  My doctor said, ‘it really sounds like shingles, but I don’t see anything.’ My doctor did finally find a few she could see/ culture, and because of their location, had to test them for STDs. (My husband and i had been married 23 years and together since we were 20, so again, NOT fun bc someone was going to be in big trouble!!) Thank God, we were all clear from that issue. It came back clearly as Shingles. I was thankful for the culture after all because since mine were mostly internal or invisible, I was glad to know definitely what it was.  I took  the Acyclovir/ Valocyclovir to treat it, but over the next few years, i recurred. I now feel sure that this is related to my immune response and celiac. If you do a little reading, you’ll find that when shingles recurs in people, they generally have another autoimmune and/ or gluten issue. I still have nerve pain that flares there, and i do think those flares are gluten related sometimes. 
 

Shingles HURT! Yours sound more like shingles to me that DH. Most people’s shingles show on the outside.  My DH did look like acne (like yours) not at all like hives, like some photos, but my DH never hurt at all, although it is a little irritating, making you want to scratch a little, but not much. Mostly, mine was just THERE, ugly and worrisome and concerning. Shingles shows up suddenly and quickly, although it does spread out from the first tiny area during the first week or so. My DH showed up more slowly, one at a time. (But then did not go away.)  please note, that just because i think yours sounds more like shingles does NOT mean that i don’t think it is gluten, possibly celiac related. I think mine was connected.) 

For either one, you could try the creme i used (my doctor recommended) from drugstore, over the counter, not expensive. Salonpas Lidocaine plus creme or gel. I really helped numb the shingles pain, and was ok to put on slightly open sores, even in a delicate area. It will burn slightly for 5 seconds or so, then helps. 

Hope that helps. Feel better! 

 

[Scott Adams]

I had a shingles flare once and can definitely testify that it was one of the most painful things I've experienced. For me it flared behind my right ear and up the side of my head. Strangely I had what I thought was a pinched nerve in my neck for many years leading up to this--a tingling sensation that shot up the exact same nerves, and I now realize that this was a precursor to shingles.

During the flare I got the typical shingles hives/blisters, and it felt like I had lighter fluid sprayed on that area, lit on fire for a minute, then extinguished...like I had a severe burn. I recommend the new shingles vaccine, which is two shots, and is over 90% effective. I had to wait until I was 50 to get it, but so far I've never had another flare up (knock on wood!).

[Baby Blues]

On 5/17/2021 at 12:48 AM, trents said:

Everything you list as symptoms in your two posts screams celiac disease. Ask your primary care doc to order a celiac antibody panel. The most important test is the tTG-IGA so if he/she is not willing to order the full battery then insist on that one. It is the most specific for celiac disease but the least sensitive of the IGA tests so the full panel is better: https://www.imaware.health/at-home-blood-test/celiac-disease-screening

Don't hesitate to walk your physician by the hand with regard to diagnosing celiac disease. Most of them are woefully ignorant of the disorder. Everyone on this forum will attest to that. You will likely need to become your own advocate in this matter.

Well, I have an appointment for tomorrow with my PCP.  Here's the rub:  Since I first started reading about celiac disease here and elsewhere on the web, I have cut most gluten out of my diet.  My bowel movements have returned to normal, no abdominal cramping or distension, and the rash is clearing.  I ingested very small amounts of gluten-containing foods a couple times just to see if I had a reaction and, sure enough, new blister-bumps appeared along with that severe itchiness and abdominal discomfort and flatulence.  So, I DON'T WANT TO RETURN TO EATING GLUTEN-CONTAINING FOODS just in order to have the blood test.  There's no way in H-ll that I'll ever want to return to that awful, chronic, life-destroying diarrhea, cramping, gas, bloating etc much less the Devil's Hives (my name for DH). 

All that leaves me wanting to cancel the appointment, as I believe it will be a complete waste of time.  I'm feeling so much better and it's all because I changed my diet.  It's not that big of a deal at this point.  I don't mean to minimize anyone else's experience, because I understand that it can be extremely difficult if the condition is more severe than mine.  So, for now anyway, I'll self-diagnose as  celiac and adjust my diet accordingly.  After a few more weeks of avoiding gluten, I'll begin to eliminate other foods such as dairy and sugar -- just because I believe it will result in even more improvements in my physical AND MENTAL health, specifically depression and anxiety.

[trents]

Not a bad decision at all, really. One of the viable options. The only pitfall of not seeking a clinical dx of celiac disease is the temptation to rationalize and cheat.

[Baby Blues]

On 5/18/2021 at 8:28 AM, JenniK said:

Shingles HURT! Yours sound more like shingles to me that DH. Most people’s shingles show on the outside.  My DH did look like acne (like yours) not at all like hives, like some photos, but my DH never hurt at all, although it is a little irritating, making you want to scratch a little, but not much. Mostly, mine was just THERE, ugly and worrisome and concerning. Shingles shows up suddenly and quickly, although it does spread out from the first tiny area during the first week or so. My DH showed up more slowly, one at a time. (But then did not go away.)  please note, that just because i think yours sounds more like shingles does NOT mean that i don’t think it is gluten, possibly celiac related. I think mine was connected.) 

For either one, you could try the creme i used (my doctor recommended) from drugstore, over the counter, not expensive. Salonpas Lidocaine plus creme or gel. I really helped numb the shingles pain, and was ok to put on slightly open sores, even in a delicate area. It will burn slightly for 5 seconds or so, then helps. 

Hope that helps. Feel better! 

 

Hi JenniK.  I have had recurring shingles so many times I've lost track.  The first case was over 20 years ago.  I've had doctors tell me it's impossible to have shingles more than once-- ignorant!  Yes, shingles is very painful.  The rash I had on multiple areas of my body bilaterally recently wasn't shingles, that's for sure.  But it was very painful.  In reading other descriptions of DH, I learned that it is usually extremely painful with a burning itch.  So, it seems you were lucky not to have any major problem with yours.  I appreciate the recommendation about Salonpas Lidocaine Plus.  I'll try it if I have another outbreak either of shingles or DH.

[Baby Blues]

1 minute ago, trents said:

Not a bad decision at all, really. One of the viable options. The only pitfall of not seeking a clinical dx of celiac disease is the temptation to rationalize and cheat.

NEVER! ABSOLUTELY NO!  I say that now, but when I'm feeling really well, I'll probably forget how bad it's been and cheat.  Woe is me!  Why are we humans so stupid when it comes to our health?

[GFinDC]

Hi Baby Blues.

You do need to be eating a little gluten each day for the DH testing.  For DH they take a small biopsy of skin from next to a blister, not on it.  DH can take 6 months or more to clear up from some people.   Dapsone can be used to treat DH on a temporary basis.  That might be a reason to pursue the testing so you can get a Dapsone RX if needed later.  Dapsone reduces the itching and blisters.  Sometimes people have a really difficult time getting rid of their DH blisters/itching.  DH can react to very small amounts of gluten.  A dermatologist is the doctor to see for testing DH.

 

[Scott Adams]

If you have a good doctor that can accept that you have gluten sensitivity you should still be able to get a prescription for Dapsone if you need it, but you could always discuss this with your doctor beforehand. I agree that if you're convinced that gluten is the cause of your severe symptoms, and you feel great after going gluten-free, then there is no real reason to torture yourself just to have a piece of paper that says you have it (and then good luck getting life insurance without paying crazy costs...I've consistently paid a premium consistent with someone 20 years older than me. Private health insurance rates could also be affected. Doctors never discuss these things with you as a consequence of a diagnosis.).