Possible DH? And next steps?

[HappyCamper8]

Hi, everyone! Was just wanting to get an opinion on my symptoms and story. I am relatively unfamiliar with DH. 

I am a 28 year old female with hypothyroidism, and have been experiencing intense stress over the last 6 months. About 9 days ago, my right shoulder started to itch and there was a very mild rash (my husband said that it looked like a "food allergy" rash). Pretty itchy, but it hung around for an hour then disappeared. Then 6 hours later it came back and then disappeared. It kind of ebbed and flowed like this for a few days- each time hanging around a little bit more and getting bigger. It started looking more like hives (welt-type red raised areas, but also little circular spots coming out from it). The most unbelievable itchiness. Poison ivy times 100. About 4 days after that, spots appeared on my right inner elbow, and then a few days later on my left inner elbow. I was desperate because I wouldn't be able to see the doctor for another 4 days, and the creams and stuff I was using helped some with the itch, but didn't seem to do anything for the rash. There was some very minor blistering but not a ton. 

I stopped eating gluten Thurs night, and over the weekend the rash is finally starting to improve. I don't know if this is a coincidence or what, but the doctor I saw today said to keep staying off gluten for a couple weeks, reintroduce it, and see if the rashes come back. 

Does this sound and look like DH? Also, is this plan from the doctor reasonable as far as finding out whether this is DH? How soon after eating something with gluten does a reaction typically happen? 

Thanks for your help! 

[squirmingitch]

This is not a good plan for finding out if this is dh. 

FIRST:

ALL celiac testing requires the patient to be on a full gluten diet, not a gluten light diet & not a gluten free diet & not a, "I only went gluten free for a couple weeks & then started right back eating it for 3 days" diet. THIS INCLUDES DH BIOPSIES!

I get so pissed with these doctors who tell the person to try going gluten free & see what happens. Makes me want to pull my hair out!!!!! If one had gone gluten free & then wants to be tested for celiac, they have to do what's called a gluten challenge:

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NOTE:

60% of those with dh test negative on the celiac serum panel. If you suspect dh, the easiest, best way to get a dx is to get a dh biopsy

Here's a whole bunch of links for you:

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9 times out of 10 the dermatologist will do the biopsy wrong & take it right on top of a lesion. Take someone with you to make sure it's done correctly b/c they like to take it from areas where you can't see what they're doing such as your back.

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DH can come & go whether one is on a gluten free diet or not. You see, the antibodies are deposited under the skin & they are vexing as hell -- I swear they have a mind of their own. It takes time for them to all get out of your skin -- varies with each person; and until that time, the dh can wax & wane. 

 

[Ging]

Fascinated by your response, squirmingitch (and what a great handle.)  I'm very lucky that my tests (biopsy and bloodwork) all came back positive since I now know the biopsy was done incorrectly.  They took that whole little blister.  That was done by a dermatologist that has some familiarity with DH.  He actually has asked to use my case for teaching.  Here's hoping he gets it right!  Ha ha.

Now I'm also seeing a GI.  He mentioned doing a gluten challenge and I know he saw the look on my face that basically said 'you've got to be kidding' because he backed off for now in hopes of finding something definitive with endoscopy, etc.  The blood test he did was negative which I understand can be the case for DH sufferers and I'm also on a gluten free diet as of a couple months now.  

Here's my question - is there any need to do a gluten challenge?  Frankly, I'm scared to death to do one as I've had one outbreak that manifested on my face.  I get the usual elbows, shoulders, hairline, knees, etc, but the one on the face was right under the eye and quite visible - looked like someone bit me in shape.  I don't want any permanent discoloration or scarring on my face if possible and that was just from a tiny bit of cross contamination I think.  Though from what you've said, maybe preexisting?  

Too much to learn - seems like all I do is research and get a bit more info and a lot more confused info... :).  

Appreciate your time and any help,

Ging

[squirmingitch]

Ging, I'm confused. In the first paragraph you say your biopsy & blood work came back positive yet in the 2nd paragraph,, you say the blood test was negative. ??????

If you had a positive dh biopsy then you don't need any other testing. A positive dh biopsy is a dx of celiac.  See:

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I think you're very lucky to have had the incorrectly performed biopsy turn up positive!!!! It must have been that new that there were undamaged areas the pathologist could find in the area on the margins where the patterning had not been destroyed. 

Again, if you had a positive dh biopsy then you have a dx of celiac & there is no need for an endoscopy to confirm. For endoscopic biopsy, the challenge time you have to eat gluten is 2 weeks but I wouldn't do it come hell or high water! That's me personally. It's not that I fear an endoscopy, it's eating gluten that I fear. 

However, to answer your questions concerning scarring....... I have not had any PERMANENT scarring & I had some horrid, horrid outbreaks and I had outbreaks that occurred on the same areas over & over & over & over again. They will turn sort of brownish or purplish & then with time, they fade & get lighter & lighter until they just disappear. I have read where some people have white spots but I have only had purple or brown ones. Yes, the ones on your face could have been cc or pre-existing. That's what's so mind boggling with this stuff! It's really hard to be sure a lot of times so you end up chasing your tail or feeling like it anyway.

[Ging]

Thank you for the reassurance!  I find the amount of information mindboggling and there's so much anecdotal evidence... .  Nice to know that the chances of scarring/permanent discoloration are slight.

I apologize for the confusion on the test results.  The dermatologist got the positives and now the GI doctor has run his own blood test that came back negative.  I wondered if that might be the case when he decided to draw blood - as you said, I felt very lucky that the first round of testing with the dermatologist was clearly positive.

I think I'll tell the GI's office that the endoscopy is off.  If there's no need, there's no need, and why go through a procedure to no purpose?  

And the antibodies linger in the tissue?  Good grief.  How do you figure out when you've had cc?  How do you plan your Glamour Shots?   I do think I'm beginning to see a bit of a time frame when I've had some contamination - I confess though, that I really feel overwhelmed.  The reams of information and tantalizing bits of commentary that suggest new avenues to research (and worry about) are never-ending.  The doctor has said nothing about iodine, vitamin deficiencies, or any other complications.  I suppose I'll learn in time and with everyone here so willing to help it will be an easier time than trying to do it alone.

Thank you again so very much!  I'll keep an eye out for more informative links like you gave - those were great.