Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Possible DH? And next steps?


HappyCamper8

Recommended Posts

HappyCamper8 Newbie

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! 

Screenshot_20180709-172219~2-432x330.png


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

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:

Open Original Shared Link

 

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:

Open Original Shared Link   

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.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

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 Contributor

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 Veteran

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:

Open Original Shared Link

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 Contributor

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? :D  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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,650
    • Most Online (within 30 mins)
      7,748

    NancyW
    Newest Member
    NancyW
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jenn D
      Hi. Did your ema levels ever go negative? My son is 2 years in gluten free and they are still positive.  I'm scared he has refractory celiac disease. Please if anyone has any info greatly appreciate it. His ttg is 3 which is considered normal.
    • MomofGF
      I will have that info soon but it was a laundry list of a test and 9 viles. ok so there were some days she was gluten she barely ate because of the reactions. I told her 3 weeks of atleast 10g’s a day and no gluten-free days. Thanks so much for your help! I didn’t know my suggestion for gluten-free days would have hurt her.    I will come back with the list to make sure the req was proper!! 
    • trents
      A "gluten challenge" of two weeks would be the bare minimum for expecting to render valid testing, and that would have been paired with eating a minimum of 10 g of gluten each day (the equivalent of 4-6 slices of wheat bread). And with the three gluten free days in the midst of that two week gluten challenge I would not have confidence in the results of the testing. Was there a blood test done for IGA deficiency? Can you post the test names that were done with the scores and with the reference ranges used by the lab? By the way, with celiac disease the issue is not being able to digest gluten. Celiac disease is an autoimmune disorder defined by the fact that ingestion of gluten triggers an immune system response that attacks the membrane that lines the small bowel. The immune system mistakenly identifies the protein gluten as a biologic invader.
    • MomofGF
      Hey all!! M i want to thank everyone for their suggestions and advice - I am a single mother of 4 (now 3) and was helping with my oldest leaving the nest. I have another child with medical issues and with work (it’s our end year), life has been crazy and I haven’t had the time to answer.    so we got a blood test done for my daughter that can’t digest gluten. She had been eating gluten for 2 weeks. The blood work came back normal? How is that possible. I see her with my own eyes and it’s not normal. Is that not long enough?  I am thinking about having her eat gluten another week then go to the hospital and see what they say.    She did have 3 gluten-free days in those 2 weeks but she was getting afraid to eat and I told her to may take a day off - was this a bad thing to do? Girl was having constant back pains and muscle soreness as well. Headaches/migraines…should I wait longer. I did see 4-6 weeks of Gluten consumption prior to testing… kind of at a loss now.    Thanks to everyone for whatever advice you can give.   Enjoy your Sunday 😃👋👋      
    • Scott Adams
      This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • Create New...