Jump to content
  • 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

Diagnosed With Dh Without Biopsy


LoriC

Recommended Posts

LoriC Apprentice

My dermatologist is treating me for DH, i'm on dapsone 100mg a day now..he never did a skin biopsy, he said he wants to clear the rash up first with the med and gluten free diet..I told my family dr. and he set me up with a gastro spec. in Oct. I've had gastro problems for about 16yrs, been told its IBS, but now i'm worried i have had celiacs all these years ;( I've had scopes done and upper lower GI's but i never heard of celiacs before, so i'm not sure they ever tested me for it. I don't no of anyone in my family that has/had celiacs either.


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



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular

Sounds like your dermatologist is the only doctor you have seen who has any sense at all.

Most of us on this board are of the opinion that IBS doesn't actually exist as a disease. The S stands for "Syndrome," which means a collection of symptoms. Those symptoms are IDENTICAL to the symptoms of celiac. Unfortunately, most doctors seem to be idiots, and they don't bother testing for celiac because they have either never heard of it or they are sadly misinformed about it (like, they think you have to be wasting away to nothing to have it, or that it's a children's disease, or that it's extremely rare, etc.).

Anyway, welcome to the board! I hope your rash and tummy troubles disappear quickly.

sickchick Community Regular

Congratulations on the diagnosis! Unfortunnately you already had to endure a scope :huh:

happy healing!

  • 2 weeks later...
Queener Newbie

You indicate that they have set you up with a gastro appt in October. If you are gluten free now, any test results will not test positive for Celiac (not sure about DH). Surprised your dermatologist didn't do a punch biopsy of your rash - this must be done when you have the rash - they test skin right next to the rash (ouch by the way!!). :huh:

LoriC Apprentice
You indicate that they have set you up with a gastro appt in October. If you are gluten free now, any test results will not test positive for Celiac (not sure about DH). Surprised your dermatologist didn't do a punch biopsy of your rash - this must be done when you have the rash - they test skin right next to the rash (ouch by the way!!). :huh:

He did do a scraping at my first appt. but i was told thats not a biopsy. I'm just going to see what this dr has to say, he won't do any tests unless i say so lol. I might go for the scope to see how much damage was done to my intestine, i've been diagnosed with IBS for 16 yrs, so i'm worried how much damage was done in all that time. I don't understand why my dermatologist didn't do the biopsy, i really wish he would have. But i do believe i have DH, with the dapsone and the gluten-free diet, my rash is almost gone, which is the first time in a year, a dr. was able to control it or get rid of it completely.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,816
    • Most Online (within 30 mins)
      7,748

    KTH
    Newest Member
    KTH
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  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...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.