DH and Doctor Frustrations! HELP!

[Justpeachy]

I think it's safe to say that everyone here has been on a roller coaster ride seeking a diagnosis. My ride started right before easter,  when I started to itch intensely around the...gosh this is embarrassing...anal area. I, naturally, freaked out and thought everything from hemorrhoids to parasites,  that is until the itchiness (and i mean, tear my skin off, wake me up at night, bruise inducing itchiness!) popped up other places, including my back, shoulders, chest, shins, scalp and elbows. My doctor diagnosed me with folliculitis and prescribed antibiotics and steroids. When that didnt work, she prescribed antifungal meds, and after that, treated me for scabies...twice. Next came the dermatologist who did patch testing and diagnosed me with 9 different chemical type allergies.  After meticulously,  zealously  (you get the picture) removing all trace of those chemicals, including having my husband change all his toiletries as well...still no relief. Next comes the allergist who decides not to test for food allergies but for environmental allergies...all negative (except mild dust mite allergy). Also ordered bloodwork for histamine and tryptase levels etc... all normal. Allergist prescribes taking zyrtec and pepcid for 8 weeks. I had to stop taking them after 3 days as they upset my stomach and made me feel like the walking dead. Next recommendation from the allergist,  go back to the dermatologist for a skin biopsy. After scheduling the biopsy, the nurse calls me to tell me they will not be able to diagnose me and it's something they dont see very often. So i cancelled that appointment and went back to my regular doctor, one because i have a sinus infection i cant get rid of and two, for advice on what to do next. She informs me that if I have DH, that that could be why I cant shake the sinus infection (crazy immune system!).  She refers me to a university affiliated dermatologist and tells me to be certain I ask if they are experienced with dermatitis herpetiformis.  And that is where i have been stumped.  I made the appointment but was told I have no way to ask the DR or nurse if they are experienced with DH. So, being desperate to try anything,  i have been off of gluten but have no way of asking the DR if I should be eating it before a biopsy, and if so, for how long. My rash seems to wax and wane but never goes away. It has seemed to settle on my elbows, scalp, back and "bikini" area and is symetrical. I was diagnosed with IBS years ago and about 8 months ago had bloodwork done to check for celiac  (though the exact test, I'm not certain of), which came back negative. I dont know if I should continue to search for a definitive diagnosis or take some time off from myriad testing and inexperienced doctors to try a meticulously gluten free diet. From what I  understand, it can take years to show improvement.  The only thing that worries me about that, is if it is not DH but some other more serious underlying cause...I know many others have had worse experiences and much crazier stories than mine. Any advice would be greatly, greatly appreciated !!!!

[squirmingitch]

I left some links for you on another thread where you had said your blood tests were negative. Here:

 

Get copies of your celiac serum panel that was done. #1, I bet they didn't give you a full panel. #2, 60% of those with dh test negative on the blood panel. 

Here is the official recommendation from the Chicago Celiac Disease Center on eating gluten & a dh biopsy.

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Interesting.... I can't find where it says you still have to continue eating gluten even for a dh biopsy. I know it's there somewhere!

Ah! I found it:

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Here are some other links you might be interested in:

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Scroll down on this link to the part that says: Diagnosing DH With Skin Biopsy. That tells exactly how the skin biopsy is performed. Print that out & take it with you to the derm appt. 

Here's an even better one to take to the derm:

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A positive dh biopsy is a dx of dh & no further testing is needed.

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How long have you been off gluten? That's also why I said get your doc to do a eTG (TG3) serum on you. If you read those links I posted regarding that, you will se at least 1 of them says it does tend to show a positive for a time after you have been gluten free so I really think you ought to get your doc to do that for you.

You sound like the type (I'm not making any judgements here) that needs a definitive dx in order not to doubt, question, & drive yourself nuts wondering if it's something else. If that's the case, then you need to pursue. Also, having no idea of your age or if you have kids or plan to then it's really important to have a solid dx because it makes it so much easier to get your kids tested.

I'm so sorry you've been through all this hell of misdiagnoses. It's ALL TOO COMMON to hear stories like yours. 

It can take years to get free of the rash BUT it also often happens that people get free of it in a couple months. You won't know which you will be until it happens.

BTW, many, many, many have tried Dapsone & had to quit because of side effects. Before you consider such, please do your research into the drug.

I am allergic to sulfa drugs & Dapsone is a sulfa drug. The next recommended drugs for dh are sulfa class drugs until you get about 6th down the line & then it's tetracycline + niacinimide. I got accidentally glutened & am having a flare of the rash. My doc & I are experimenting with Doxycycline. It looks quite promising at this point in time as pertains to me. I will update when I can say for positive.

 

[squirmingitch]

If you've taken oral steroids in the last 2 months it can give you a false negative on the dh biopsy. Don't use any topical steroids either for about 2 weeks prior.

[Justpeachy]

Thank you so much for all the info! I have been off and on gluten the past few months because i couldn't figure out if i needed to be on it for testing. Most recently i have been off for a week.  You are absolutely right about me...i like a definite diagnose, though part of that may be due to being teased incessantly about being a hypochondriac.  Do you or does anyone else know how long i should be on gluten before the bloodwork and/or skin biopsy? 

[squirmingitch]

The Chicago Celiac Disease Center says eating gluten 1 slice of bread or 1 cracker per day for 12 weeks for the blood tests and for an endoscopic biopsy 2 weeks prior. I can't find anything saying exactly how long to eat gluten for a dh biopsy except they recommend you keep eating gluten until the biopsy. DH seems to be the bastard stepchild of celiac disease in that far, far less research has been done on it. I would guess b/c only 15-20% of celiacs have dh. I have seen people on here say they had a dh biopsy that came back positive after they had gone gluten-free (varying time frames gluten-free) and then again, there have been people who got a negative after being gluten-free for only a week or so. 

A heads up on iodine. High iodine foods can make the rash flare like crazy so in order to give yourself a little relief, you can try going low iodine for about 2 weeks. Here's a low iodine diet:

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Also NSAID's can aggravate it. Most people seem to tolerate Tylenol though if you really have to take something.

[Justpeachy]

I had a biopsy done (2 samples, 1 on a lesion and 1 next to lesions), and also more bloodwork done. All came back negative. However, I only had been eating gluten for 2 weeks prior, and it took a week of gluten for lesions to reappear. I also used a topical steroid off and on (1x a week approximately) for a month or so before testing. The dermatologist told me to stay off gluten though, and said she wants to do more allergy testing (her next open testing appt is in 6 months!!). I know I'm not the DR, but I dont think it's allergies...without a doubt, my skin begins clearing about 2 weeks post gluten-free diet...this is without changing anything else in my lifestyle. And when i had to go back on gluten before my biopsy, it took about a week, but did reappear. Now, about 2 weeks post biopsy and gluten-free, it had begun clearing until i worked outside all day in heat, humidity,  sweat etc and it has definitely irritated all the places that were healing (not new breakouts, just aggravating what was going away!). All that being said, i have a friend who is an MD( who's hobby is to attend conferences on skin conditions!), and she has told me that without a doubt, I have celiac/DH.  I think I just feel like I need test results and paperwork to show for it...especially to show family members who are unsupportive (gross understatement!) of the extreme changes I've had to make!