Was my dermatologist wrong?

[awwhil]

Hi all, 

I've been reading a lot of your posts over the past year or so, and can relate to so many of you! I'm also hoping you might be able to help.

What initially brought me here was a wicked rash that started really small on my back and spread to my abdomen. At first, I thought, "Eh, it's just allergies. It is spring, after all." However, as time went on, the rash spread and was so itchy it kept me up at night. After a few months, I couldn't take it anymore and wound up at the dermatologist. Of course, she tested (and treated me for) scabies... which I clearly did not have and she could find no physical evidence of. None of the topical scabies treatments helped, although some of the steroids gave me relief for a while. She took a biopsy that came back inconclusive with a hard "maybe" on the arthropod bites. 

Jump to a couple of months later and those suckers started coming back with vengeance. After the several hundreds of dollars I'd spent in vain at the dermatologist, I went to an allergist. He tested me via skin prick tests for both environmental allergies, to which I lit up like a freakin' Christmas tree, and food allergies, which I had fewer and less severe reactions to. He then put me on a strict elimination diet where I could not eat a total of 16-some-odd foods, which included barley. I found that barley hides in many gluten products, so I essentially had it eliminated wheat products from my diet. After the 30 days, I slowly started reintroducing foods -- eggs, carrots, celery, etc. Then I drank a beer. Slowly but surely, the rash started coming back. 

I thought I'd made my big discovery. It's barley! But even mindfully not eating barley (with the exception of a couple of slips because I didn't know that some gluten-free beer still contains barley), the rash has been a constant fixture in my life for a while now.

To give a bit more detail, the rash usually shows up on my back/shoulder blades. It's been on my lower back before. It also shows up on my chest and has been on my abdomen before as well. Never shows up on elbows or knees like others describe. The little sons-of-bitches are itchy as hell and will wake me up occasionally, and sometimes I even wake up with blood on the sheets. They almost look like tiny scabbed-over craters after they've been there for a while. 

Could it be DH despite all the testing and dieting I've done? Should I bother with further testing, or just try a gluten-free diet? 

I appreciate any insight!!! 

H

[kareng]

15 minutes ago, awwhil said:

Hi all, 

I've been reading a lot of your posts over the past year or so, and can relate to so many of you! I'm also hoping you might be able to help.

What initially brought me here was a wicked rash that started really small on my back and spread to my abdomen. At first, I thought, "Eh, it's just allergies. It is spring, after all." However, as time went on, the rash spread and was so itchy it kept me up at night. After a few months, I couldn't take it anymore and wound up at the dermatologist. Of course, she tested (and treated me for) scabies... which I clearly did not have and she could find no physical evidence of. None of the topical scabies treatments helped, although some of the steroids gave me relief for a while. She took a biopsy that came back inconclusive with a hard "maybe" on the arthropod bites. 

Jump to a couple of months later and those suckers started coming back with vengeance. After the several hundreds of dollars I'd spent in vain at the dermatologist, I went to an allergist. He tested me via skin prick tests for both environmental allergies, to which I lit up like a freakin' Christmas tree, and food allergies, which I had fewer and less severe reactions to. He then put me on a strict elimination diet where I could not eat a total of 16-some-odd foods, which included barley. I found that barley hides in many gluten products, so I essentially had it eliminated wheat products from my diet. After the 30 days, I slowly started reintroducing foods -- eggs, carrots, celery, etc. Then I drank a beer. Slowly but surely, the rash started coming back. 

I thought I'd made my big discovery. It's barley! But even mindfully not eating barley (with the exception of a couple of slips because I didn't know that some gluten-free beer still contains barley), the rash has been a constant fixture in my life for a while now.

To give a bit more detail, the rash usually shows up on my back/shoulder blades. It's been on my lower back before. It also shows up on my chest and has been on my abdomen before as well. Never shows up on elbows or knees like others describe. The little sons-of-bitches are itchy as hell and will wake me up occasionally, and sometimes I even wake up with blood on the sheets. They almost look like tiny scabbed-over craters after they've been there for a while. 

Could it be DH despite all the testing and dieting I've done? Should I bother with further testing, or just try a gluten-free diet? 

I appreciate any insight!!! 

H

I just want to clarify that "gluten free beer" cannot contain barley.  "Gluten reduced" beers contain barley. 

 

Maybe its an allergy to barley?  Have you been eating wheat things but not barley?   Maybe try that and see if that works.  

 

[awwhil]

5 minutes ago, kareng said:

I just want to clarify that "gluten free beer" cannot contain barley.  "Gluten reduced" beers contain barley. 

 

Maybe its an allergy to barley?  Have you been eating wheat things but not barley?   Maybe try that and see if that works.  

1

Hi kareng, 

Thanks for the reply. It could have very well been a "gluten reduced" beer -- it was a at a microbrewery. 

So the story with the barley is that, after being told to eliminate it, I also eliminated most (if not all?) wheat products since I found wheat/barley together so often on ingredient lists. It was a sad, breadless, pastaless, zoodle-eating existence. The only time I ate wheat was *probably* in a brownie or cookie here and there, but I honestly don't have a crazy sweet tooth so typically turn down such treats. I only did that during the elimination diet which lasted about 2-3 months. During that time, the rash itch got less severe, and eventually went away. I was also using topical steroids. 

Since the "aha" barley moment, I've been pretty strict about not eating barley. That said, I went back to eating the occasional slice of pizza, french bread, pasta, etc. The rash came back and is still here. The last barley I (knowingly) ingested was about a month ago.

[kareng]

11 minutes ago, awwhil said:

Hi kareng, 

Thanks for the reply. It could have very well been a "gluten reduced" beer -- it was a at a microbrewery. 

So the story with the barley is that, after being told to eliminate it, I also eliminated most (if not all?) wheat products since I found wheat/barley together so often on ingredient lists. It was a sad, breadless, pastaless, zoodle-eating existence. The only time I ate wheat was *probably* in a brownie or cookie here and there, but I honestly don't have a crazy sweet tooth so typically turn down such treats. I only did that during the elimination diet which lasted about 2-3 months. During that time, the rash itch got less severe, and eventually went away. I was also using topical steroids. 

Since the "aha" barley moment, I've been pretty strict about not eating barley. That said, I went back to eating the occasional slice of pizza, french bread, pasta, etc. The rash came back and is still here. The last barley I (knowingly) ingested was about a month ago.

Barley isn't in pasta or pizza dough, etc.

 

Open Original Shared Link

 

[awwhil]

5 minutes ago, kareng said:

Barley isn't in pasta or pizza dough, etc.

 

Open Original Shared Link

 

Right, I understand that. So what I'm wondering, is if the rash is still present (and quite frankly, RAGING) even though I'm not eating barley, could it be DH? 

[Ennis-TX]

Could be....quite frankly the gluten free diet is not that bad now if you eat only at home...they make gluten free everything. But to you question about testing, it is quite simple if you have active lesions they take a biopsy BESIDE the lesion not on it and test that. Hear you can read it here Open Original Shared Link

[squirmingitch]

The best way to find out for sure is as Ennis pointed out, a dh biopsy. Make a print out of that link Ennis gave & take it with you to a derm. Preferably a derm who has experience with the proper way to biopsy dh. Bring a friend or relative with you so they can help advocate for you. If the derm takes the biopsy on your back, you won't be able to see if it's being done ON the lesion or on a clear spot ADJACENT to it, whereas anyone who accompanies you will be able to see. I think it's shameful that you & so many others get dx'd with scabies when all the derm has to do is a scraping & put it under a microscope to know for sure.    Something screwy is going on where my cursor won't go to a new paragraph so please excuse my run on writing. DH can come & go at will whether you're eating gluten or not. You see, the antibodies get deposited under the skin & can rage or lay sort of dormant until something triggers them to go off. If things go on long enough where one with dh continues to eat gluten then one day, the dh is going to present & not go away (while you eat gluten). You don't ever want to get to that point. I want to make sure though that you understand that EVEN for the dh biopsy you MUST have been eating gluten each day for the previous 12 weeks. 

[apprehensiveengineer]

Oh gosh. This sounds like what happened to me. I originally thought my rash was allergic in nature and asked to be referred to an allergist, had skin prick testing done, and was told to do an elimination diet (whereby I "accidentally" became gluten-free for long enough to make an official diagnosis impossible).

As others have said, try to insist on getting a biopsy done properly while you are still eating gluten. I know that this is easier said than done - I'm not a pushover and I've not managed to convince dermatologist to do one on me. Because I am young and the lesions I get are on my back/neck/scalp, I'm always told it's acne, bad hygiene or an allergic reaction to lotion/shampoo (very lazy diagnoses). I think the suggestion to bring a family member/friend is a good one. I wish you good luck in this endeavour.

My rash primarily appears on my upper back, chest, neck and scalp, centered along the mid-line. If it gets very bad, sometimes it will appear on my elbows, knuckles and knees, but this is rare for me. Although most doctors will say that this is "not classic DH," most primary literature indicates that the locations I listed are among the most common sites. When I was still consuming gluten, the rash was so itchy that I had a lot of trouble sleeping most nights and fantasized about bathing in bleach/burning my skin off (don't worry, I didn't). You should take my account with a grain of salt of course, as I do not have a biopsy DH diagnosis.

As for barley, I find that it messes me up very badly. I love[d] [conventional] beer, and actually stopped drinking it long before being gluten-free because I noticed that I always felt terrible the next day and that it blew up my mysterious rash. If it is indeed DH, you do need to avoid other sources of gluten (wheat, rye, all oats until you have healed enough to do the oat challenge) as well though.