Best first step to diagnosis?

[lol712]

Hi everyone, I'm relieved to have found the words dermatitis herpetiformis today. My question is if I suspect that this may be what I have, is it worth it to go to my primary care doctor at all, or go straight to a dermatologist? If I go to a dermatologist, how long does a biopsy take? How likely is the common dermatologist to take this concern seriously?

 

Background: last winter, my stepson and his girlfriend were diagnosed with scabies. They both had a pretty bad case of it on their arms, but didn't know what it was. I hugged both of them prior to them finding out what the rash was, all of us in sweatshirts - no skin to skin contact. Several weeks later, I noticed red bumps and a small "track" of scab-like material on my upper back/shoulders. I went to urgent care, where I was diagnosed with scabies (I disclosed the exposure during the appt). I treated the whole family with cream and we moved on. I honestly can't remember if I was still itchy at that time. During the summer, I started noticing bumps on my arms - bicep to forearm region, just below the elbow. My arms felt really itchy fairly often. I thought I must have been re-infected with scabies, so I treated myself again with the cream. 

The symptoms have never gone away, the itching is persisting, and meanwhile, neither my husband or little boys have ever exhibited a single red bump or rash. I now have more red bumps across my upper back, and spots continue to bother my arms. I've used the scabies treatment cream several times now, and I've obsessively searched my bedroom for signs of bed bugs. Basically, I'm going completely crazy. The biggest thing that stood out in reading about DH was blisters reappearing in the same spots, and I had 2 show up right in the middle of scars from old blisters.

Meanwhile, I didn't have a heavy gluten diet for a long time. When my husband was diagnosed diabetic a few years ago, we went as paleo as possible for a few months. I noticed that all belly fat completely disappeared. But then I got pregnant and went back to eating anything I wanted. But obvious gluten foods stayed further on the outskirts of our diet. During this past year, I've developed a random addiction to pretzels, and I've been eating them for every snack. I can't help but correlate this sudden heavy gluten/iodine intake with the crazy itchy incurable bumps.

Pictures of DH are the closest thing I have found to actually looking like what I have. I don't have bumps on my knees, though. I always attributed red bumps on my back to being pimples, but I've always experienced itching with them, which of course means scratching and picking.

So all of this being said, if I go to the doctor and say this is my concern, how high are my chances of being blown off? I'm so exhausted and embarrassed from the itching and rash; I'm kind of worried about being dismissed and getting no relief. I know that going gluten free is a major undertaking, and wouldn't even necessarily bring relief in the short term, so I'd rather get diagnosed before making drastic and expensive dietary changes.

[Ennis-TX]

To diagnose Celiac DH they get a biopsy from next to one of the lesions if I recall, let me go find that page.

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

I hope this helps, if you get tested and they find out your celiac this is a great place to get some help, with have others with DH also.
As to your doctor...it varies. I had to go through 5 doctors to get my regular celiac diagnosed...even then I had to take some drastic measures. It really depends on your doctor. Many hate to give the Celiac dia. because there is no money in it (doctors get commissions for prescribing RX, there is no medicine for celiac, diet is the cure)

[squirmingitch]

Here's another link for you:

http://www.cureceliacdisease.org/?s=dermatitis+herpetiformis

OK, I won't mince words; it'a a flat out crap shoot. The easiest route to a dh dx is a skin biopsy. 60% of us test negative on the celiac serum panel. Also, it's more difficult to find the damage in our small intestine as our damage tends to be patchier. 

One thing is for sure. Even for the dh biopsy you MUST stay on a normal gluten diet right up until the biopsy is done just like for the blood panel & the intestinal biopsy. You have to have been on it for 12 weeks prior to the skin biopsy. Oral steroid use prior to biopsy can make the biopsy false negative. Topical steroid can affect it to a lesser degree depending on the topical. 

Make SURE the derm does the biopsy correctly!!!!!!!!!!!!! NOT ON a fresh lesion but on CLEAR skin ADJACENT. 90 times out of 100 they nod their head & say they will & then they take the biopsy smack dab on top of a lesion. Best thing to do is take someone strong willed, strong minded with you so they can watch the biopsy & advocate for you b/c they like to take it on your back where you can not see what's going on. 

I would do a dermatologist first & just bypass the primary care doc. You can use that later if you need to but since 60% of us test negative on the blood panel........

Call to ask if the derm has experience in DH -- many times the staff will say yes but that doesn't make it true. They don't always listen well, they don't always know & some just say yes b/c they never tell a potential patient the doctor doesn't know everything. 

BTW, DH can appear ANYWHERE on the body. I know the internet of paste & copy makes it to where everything you read says elbows & knees but those are just common areas for it. Actually, my elbows were the very last place it appeared on me. We've had people come on here & say the dermatologist said it can't be dh b/c they don't have it on their knees or on their elbows & such as that. 

Be your own advocate.

 

 

[kareng]

I don’t know where you live, but a lot of cities have Facebook groups.  That’s a good place to ask about doctors.  Maybe someone will have a dermatologist that diagnosed them.  
 

you might have to try variations of “ gluten free Kansas City”. Or “ Celiac Kansas City”. Or “ celiac northeast Kansas”.  That sort of thing.  Just using my city  for examples .