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

Got A Diagnosis


jeannine

Recommended Posts

jeannine Apprentice

I went back to my derm today. He is a resident and always needs to have someone else come in. Well, today he was able to bring in 2 doctors, both with experience with DH. They agreed, with out a doubt, that this evil, evil rash is DH. They told my doc to take 2 biopsies to make sure. They gave me some numbing ointment (heavy duty stuff) and said the biopsy will be looked at here in San Antonio and should have the labs back in a week. At that point, I should be able to start dapsone. I go back to gastro on 1 May to get the results of my duodenal biopsy.

The derm told me to start the gluten-free diet immediately.

I'm glad to finally have an answer (even if it did take 18 months!)

Jeannine


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



Celiac.com Sponsor (A8-M):



RoseTapper Newbie

Jeannine,

I'm glad you were able to finally get a correct diagnosis! That said, you might consider whether or not you would like to immediately jump into taking Dapsone. It can come with some pretty heavy-duty side effects. Have you considered going on a gluten-free diet to see if the DH will clear up? Mine began healing the day after I corrected my diet and only reappears when I'm accidentally glutened. If the DH doesn't clear up, then you still have the Dapsone option. Just my two cents.

jeannine Apprentice

RoseTapper, I'll see how it goes with the gluten-free and I am hoping that the rash will clear on it's own. I originally broke out 18 months ago so I'm not sure how long it will take with the diet alone. It is getting hot here in Texas and I want to be able to wear shorts :) At least I'll have a week before I talk to my doc again to see if I notice any change at all with the rash.

Thanks for your reply! I'm glad to hear that someone noticed an immediate improvment for dh with the diet alone- that gives me hope!

Jeannine

flourgirl Apprentice

Hi there! I know just how awful DH can be! Mine cleared up pretty quickly when I started the diet. I DO, however, get flair ups by taking Ibuprofen....or if I eat anything salty. We switched to kosher salt (no iodine) and that helps. I can't have any salty chips or snacks, tho' because I get those itchy blisters! You may want to watch out for those things. I'm hoping that when my skin clears I can eventually be able to use salt. Good luck healing.

ravenwoodglass Mentor

Glad you got a diagnosis. I will agree with the others that you should do the diet before the drug. I had severe DH, my face, scalp, arms, legs, personal areas, back you name it I had blisters in one stage or another and they took literally months to heal. From day one of the diet I started to heal, by a week I had no new outbreaks coming and within 3 months my biggest sign of accidental gluten was that the rash would reappear for a few DAYS. It usually takes about 2 years for all of the antibodies to leave the skin, your skin will be extra sensitive to CC during this time, which I found helpful. I have found that once the antibodies were gone even when I do get glutened I only get one maybe two tiny little blisters. Do drop out iodized salt and be really sure to check shampoos, lotions anything that comes into contact with your skin as well as anything you eat. Be sure to check all meds and supplements also. You now know what the rash is and the diet will take care of it.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,496
    • Most Online (within 30 mins)
      7,748

    AndreasRap
    Newest Member
    AndreasRap
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • JA917
      I was just thinking this same thing - requesting repeat testing prior to giving up gluten. Makes sense. Thanks!
    • knitty kitty
      Since you're having a last hurrah with gluten, request another round of blood tests for celiac antibodies.  Make sure you're eating ten grams or more daily for those few weeks before your capsule endoscopy.  You probably weren't eating a sufficient amount of gluten needed to provoke sufficient antibody production.   
    • cristiana
      Hello all I am taking some time out from work today to make my annual Christmas cake along the lines of a tried and tested English recipe which means a fruit cake, with marzipan  and icing.   As usual, I've left it too late - we're meant to bake these things some time  in advance to improve the flavour.    I never remember.  But it never seems to matter! I thought I'd share it in case any UK coeliacs still haven't made theirs and don't have a recipe, or any of my friends across the Pond want to try making one.  Do you make iced fruit cakes like this in the US for Christmas? - I have no idea! I adapt it slightly as instead of fondant icing I make Royal Icing which sets hard and you can create exciting snow scenes with it if you can find any tiny model houses, churches and trees to put on it!  (my Mum used to do this).   https://www.coeliac.org.uk/information-and-support/your-gluten-free-hub/home-of-gluten-free-recipes/1511804/ With thanks to the charity Coeliac Uk for this recipe. Cristiana  
    • trents
      Welcome to the forum, @Art Maltman! Ask your physician to order serum antibody tests specifically designed to detect celiac disease. That's the place to start but you shouldn't be on a gluten free diet some weeks before the blood draw. You certainly have some symptoms that are characteristic of celiac disease and you have a first degree relative that has celiac disease. So, I think this would be an appropriate request to bring to your physician. Here is an article outlining the various serum antibody tests that can be ordered when checking for celiac disease:   The physician may not be open to ordering a full panel but push for at least these two: total IGA and tTG-IGA. By the way, absence of gut pain is very common in the celiac population. We call them "silent" celiacs as they have no or very minor symptoms. There are over 200 symptoms and spinoff health issues that have become associated with celiac disease and the range of symptoms and effects produced by the disease in different individuals various tremendously. 
    • Art Maltman
×
×
  • Create New...