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

Okay Now Im Really Confused...just When I Thought I Couldn't Get Any More Confused!

jodikris

By jodikris
in Dermatitis Herpetiformis

Recommended Posts

jodikris Apprentice
jodikris
Posted

I just got a fax from my dermatologist at my request to SEE my biopsy results...ONE test came back positive ONE came back negative for DH....is this possible>!>!>!>!>!

So they are acting like I am crazy to be concerned about this...lets examine this...I am having to change my ENTIRE LIFE for a disease no one can tell me for sure that I have!! WTF!!!!!!!

ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Someone tell me its not me!

I have a terrible rash on my: knees, elbows, back, waist and hair/chin line

I react to Dapsome

I have stomach problems

my you know what sticks to the bowl....

SO do I have DH or do I not have it? Do I have celiac disease or do I not have it?!

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

What does your gut tell you? Run the tests over, have the endo. with biopsy, or try the diet.

Sounds like you have the same kind of luck I do.

Laura

  • 1 month later...
Dlapham celiac & DH Newbie
Dlapham celiac & DH
Posted
I just got a fax from my dermatologist at my request to SEE my biopsy results...ONE test came back positive ONE came back negative for DH....is this possible>!>!>!>!>!

So they are acting like I am crazy to be concerned about this...lets examine this...I am having to change my ENTIRE LIFE for a disease no one can tell me for sure that I have!! WTF!!!!!!!

ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Someone tell me its not me!

I have a terrible rash on my: knees, elbows, back, waist and hair/chin line

I react to Dapsome

I have stomach problems

my you know what sticks to the bowl....

SO do I have DH or do I not have it? Do I have celiac disease or do I not have it?!

Your symptoms are correct for c/d--d/h. If you have d/h you DO have c/d. The d/h coverage area for me was generally the same as you outlined. It is hard to hear and accept that one has a disease like c/d and d/h. I was big time angry. But after the gluten-free diet and the improvement it made in my over all health, I am now seeing it as a blessing, and thank God for helping me to find out what has caused me so many problems over the last 58 years. I can now actually start thinking that I may actually make it to my 80s.

Some times the tests are not conclusive. I had some positive and one skin biopsy that was none conclusive. ( that was in the middle 80's) But my symptoms worsened until October 2005 when I finally went gluten-free again and this time with better information. Now everything is better. Go with what your gut tells you, and thank God for helping you to find the problem.

Ursa Major Collaborator
Ursa Major
Posted

I guess that one skin area just was wrong for a biopsy. But if one definitely is positive, then you obviously have it. They take biopsies from more than one area to examine, just to make sure. If both were negative, you could question if you actually have DH (and even then it could be a false negative). But if one is positive, that's enough for a diagnosis.

So, I say you'd better go on the gluten free diet, and see what will happen! If you feel much better, and your stomach and bowel symptoms improve, you have your answer. The rash can take up to two years to completely clear up, unfortunately. But my skin improved dramatically within a short time on the gluten-free diet. Its not perfect, but at least my skin looks so much better, especially on my face!

And doctors are often so ignorant, what do they know. You have your answer. Act on it and ignore them.

frenchiemama Collaborator
frenchiemama
Posted

I don't know much about the lab work, but given your symptoms and the fact that you had one positive I would say that you probably have it.

colorado kathy Newbie
colorado kathy
Posted

I had one biopsy that was "inconclusive" and another one about 6 months later that was positive. At that time I was told the gluten-free diet would take 7 years before it would work and even then, it was questionable if it would help at all. I felt like you did - I thought I couldn't change my lifestyle for the rest of my life and I was pretty angry. So I didn't do anything for 5 years. I've now had positive bloodwork and I went gluten-free 8 weeks ago. I am amazed at how quickly I saw results. By the end of the first week, the intensity of the itching had decreased and Hallelujah! I began to sleep better (this is after 6 years of terrible sleep). Here I am 8 weeks later and my skin is so much clearer (not completely gone, but an enormous change), I don't have the itching, my GI system is in much better shape and my mood has improved dramatically. It takes a lot of reading to figure out how to do this lifestyle change correctly and I'm probably still making mistakes unintentionally, but that is why I read this site as much as I can - it is so helpful. Good luck to you! It is so worth it!

jerseyangel Proficient
jerseyangel
Posted

Wow--7 years? Really?

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

Celiac.com Sponsor (A8-M):


colorado kathy Newbie
colorado kathy
Posted
Wow--7 years? Really?

Yes, that's what I was told. More misinformation! I'm glad it wasn't true.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,297
    • Most Online (within 30 mins)
      7,748
    Paula Hearne
    Newest Member
    Paula Hearne
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Gluten free diet - are these symptoms normal?

      By Wheatwacked · Posted

      Welcome @Ems10, Isn't is wonderful how a simple change helps. Gluten free eating is not a punishment.  It does take attention to details when buying processed foods.  
    • Gunni
      Diabetes like symptoms and more

      By Gunni · Posted

      Hey Talia4, I still try to stay on the lower end of carb intake but things are way easier for me these days. It really looks like a digestive issue at the core in my case   As supplements with meals I'm now taking 3-4x 650mg betaine hcl without pepsin (to handle larger doses) 1-2x Doctor's Best digestive enzymes   And daily Share Pommelozzini. This has helped my digestion immensely with carbs and fats. I'm way more tolerant of larger meals and things are a lot easier. Happy to hear any progress or findings on your end as well though!  
    • Ems10
      Gluten free diet - are these symptoms normal?

      By Ems10 · Posted

      Hi. So for a month or two I had been experiencing extreme pain around my left rib going right up to underneath my breast, I went to hospital and the GP many times and one day it just came across my mind maybe I’m celiac/ gluten intolerant (celiac runs in my family)! I instantly stopped consuming anything with gluten (tbh everything I was eating was full of it) and the day I stopped having gluten the pain instantly disappeared, the next day I had a GP appointment about the pain & I informed him it just stopped instantly and explained why I believe I’m intolerant! I’m waiting on test results as of now, however I have still had absolutely no pain whatsoever today I’ve started to have diarrhea which I haven’t had in at least two months, I was severely constipated whilst consuming gluten! Just wondering would this be a symptom of gluten withdrawal? I’ve done a grocery shop from the “free from” gluten section, I’ve been very careful as I’m terrified the pain will start again! 
    • trents
      gluten-free and continued upper left side pain after drinking wine

      By trents · Posted

      I think most of us, when we first got our diagnosis, imagined that going gluten free would be the magic the bullet that would restore us to perfect health. We soon find out that it usually isn't quite that simple and that celiac disease has long fingers.
    • Celiacsugh
      gluten-free and continued upper left side pain after drinking wine

      By Celiacsugh · Posted

      Thanks! I still have much to learn, I'd hoped going gluten-free would be a magic bullet and I'm learning my system is still very sensitive which is overwhelming and discouraging at times. Thanks for the yogurt tip! There is comfort in knowing that this is common during early healing and I'm not alone! 
×
×
  • Create New...