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

Negative Blood Work And Biopsy


LoriC

Recommended Posts

LoriC Apprentice

I was diagnosed with DH back in August of 07 by a dermatologist only by sight no biopsy , negative blood work done by GI dr. I went to another dermatologist 2weeks ago, she did a biopsy, that came back negative, it said contact dermatitis...so now she will do allergy patch testing. I'm confused as to what i should do? should i go back eating gluten? i've had "some" positive results with the diet and the dapsone..but my rash never completely went away, that is why i went for a second opinion. any suggestions would be helpful, thank you


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



Celiac.com Sponsor (A8-M):



Franceen Explorer

A few things: You CAN have DH and still get negative blood/biopsy (I was diagnosed by Dapsone and gluten-free diet success by both GI and Dermatologist in spite of all negative tests which was attributed to about 2 months of gluten-free diet when tests were done).

DH can take MONTHS to go away after a 100% gluten-free diet (which is hard to accomplish at first). Even though you THINK you are gluten-free, you probably are not when you first start. There is a big education and a lot of revelations about food ingredients that takes a lot of time.

And, lastly, you could have BOTH DH and atopic/contact dermatitis. Since scratching ANY skin condition will cause the condition to worsen and spread, the contact dermatitis could be secondary to the DH - but NOT the reverse.

The best way to tell is to get off all drugs (Dapsone is dangerous, I almost died from it) and then start down the path of a 100% gluten-free diet and see if the rash goes away - and you will need to give it several months. It took mine a good 6 months to go away and I have never been 100% DH free since inadvertant glutening is a fact of life, it seems - especially when you have to eat out a lot and travel a lot for ones job! If you see absolutely NO improvement over the first month or so, then I guess you would have to suspect that it is something else.

By the way, my understanding was that Dapsone doesn't help any skin conditions other than leprosy and DH! (It was developed to cure leprosy).

LoriC Apprentice

Thank you Franceen for your feedback, I think i will stay gluten free for now, but let her do the allergy patch testing. I took myself off the dapsone back in Jan. I didn't see any change in the rash, meaning, i didn't get worse. I had told my previous dr. for weeks that the dapsone was making me to tired and terrible feeling, he didn't want to hear it..so that is the reason for the second opinion dr. every dr. i had told about the DH and how it was diagnosed said, " no biopsy?" my GI dr. said what you said, you can get negative results and still be a celiac, if the diet is working...stay on it..but i think its mental to me? Like I keep asking myself..am i? or not? is that normal to feel that way?

Franceen Explorer

Yes, perfectly normal! Everytime I'm really hungry and a box of Dunkin Doughnuts appears at the office, I say, "well, maybe I'm NOT Celiac.........and if not, I could have that doughnut!..." but I never cave into that craving, just have to distract myself.

It IS frustrating to never get a positive test of any kind and so that's why I stopped trying so hard. Considering they told me I'd have to eat a LOT of gluten for at least 3 - 6 weeks before a good test could occur and I don't want that rash back as bad as I had it ever again! I do worry that someday I'll be in the hospital for something like an emergency and they'll say "you have to eat a regular diet because there is no evidence that you have celiac!" and I'll be glutened bigtime.

But, I'm really hoping that they approve the drug they are testing - Zonulin or AT-1001 - at U of MD. See link to Philadelphia News clip. Notice in the very beginning they flash a quick photo of a person with DH!! Open Original Shared Link

And it is also possible that you don't have visible intestinal damage (yet) - so an endoscopy will also come back negative and since the medical profession calls that the "gold standard", once you have a negative with that, all Dr's will say that you don't have celiac which MAY NOT BE TRUE!!

Good luck, keep up the faith (it's only FOOD!), and realize you are not the first or last to be frustrated by this disease and the medical profession!

  • 4 weeks later...
chatycady Explorer

Thanks Franceen! That was a great reply. You are right it is only "food" and I am not the only one frustrated by Dr's! I needed to read that tonght.

Thanks a bunch.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,279
    • Most Online (within 30 mins)
      7,748

    cruzio
    Newest Member
    cruzio
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
    • Scott Adams
      From their website I see "organic barley leaf powder" as an ingredient. Keep in mind that the gluten is in the kernel, and not in the leaves. https://drinkag1.com/about-ag1/ingredients/ctr
×
×
  • Create New...