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

Dh, Blood Test, Stomach Biopsy - Help!


chatycady

Recommended Posts

chatycady Explorer

I need expert advise, so I've come to the experts. I think my father has DH. I am on a gluten free diet, as I have had many of the symptoms ie iron anemia, Pernicious anemia, digestive, balance issues and much more and am cured on the gluten free diet.

Is it true that a blood test for celiac and stomach biopsy can be negative for celiac, but the skin biopsy positive for DH?

Is it true that a skin biopsy is the "gold standard" for DH.

Is it true DH is another gluten intolerance that is different than celiac?

So why does the Dr. want to do a blood test and stomach biopsy for my father who has an obvious skin issue? I'm afraid if they both come back negative, they will tell him he doesn't have a gluten issue and that his skin problem is "what old men get". (He was told this my a nmber of Dr's. already).

Any help with this would be greatly appreciated.

Chaty


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



Celiac.com Sponsor (A8-M):



dhd2000 Newbie

Is he going to a dermatologist? My celiac bloodwork came back inconclusive, but my skin biopsy came back positive for DH. I think the skin biopsy would be much easier to pursue than the intestinal biopsy. I do think you can have DH and negative bloodwork and int. biopsy. I've learned a lot from this site: Open Original Shared Link From what I've read there, DH is the skin manifestation of celiac, not a gluten intolerance.

Good luck with your Dad. Even though my sister and I are both positive, my Dad has no interest in testing.

RoseTapper Newbie

Yes, from my reading (I believe from Dr. Peter Green's book "Celiac: The Hidden Epidemic"), people with DH have a tendency to test negative when an intestinal biopsy is done, even though their symptoms oftentimes are worse (especially iron anemia). This might be because the damage is in patches. Dr. Green states in his book that if you test positive for DH, you absolutely have celiac disease....so, yes, I would go for the skin biopsy first. However, very few dermatologists seem to know how to do a correct biopsy for DH. It must be done NEAR a lesion and not of the lesion itself; otherwise, the biopsy will be negative. Also, many gastroenterologists are unaware that 100% of patients with DH have celiac.

chatycady Explorer

Thanks for the responses, they were both very helpful. My dad's blood test was negative and so was the stomach biopsy. He now says his skin condition is getting better. I've decided he doesn't really want to know if he has DH as he doesn't want to give up the pizza buffets and chinese buffets. If he gets sick enough I suppose he wil ask quesions.

Diets are very personal and very hard to change. It takes a crisis and even then many go back to their eating habits.

But not me! And I feel great after many years of misery!

Thanks

ravenwoodglass Mentor
I've decided he doesn't really want to know if he has DH as he doesn't want to give up the pizza buffets and chinese buffets. If he gets sick enough I suppose he wil ask quesions.

Diets are very personal and very hard to change. It takes a crisis and even then many go back to their eating habits.

But not me! And I feel great after many years of misery!

Thanks

Perhaps if you live close enough you could get together with him and fix up some pizza with a good gluten-free crust, I like gluten-free pantries french bread mix and even gluten eaters have had no complaints with it. Get some Thai Kitchen rice noodles and make some chinese dishes with those and gluten-free soysauce. Cook him a stew with potatoe starch as a thickener. I think you get the idea.

If you can get him to come on here and at least just read some of the posts and some of the signatures, mine, for example, is quite telling about what happens when we are 'lucky' and don't show up in blood work.

It is hard to convince someone, and sometimes our own return to health is enough to give a family member a shove in the right direction.

Another thing you may want to do is to do a image search for DH photos. DH leaves a very distinctive purplish scar that usually doesn't fade real quick, well until gluten-free anyway. Perhaps if he sees pictures that look like his rash that will encourage him to either get a skin biopsy or just go gluten-free. While the skin will hold the deposits for a long time most folks see a decrease in outbreaks within a couple of weeks gluten-free.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,168
    • Most Online (within 30 mins)
      7,748

    watsonjennifer12
    Newest Member
    watsonjennifer12
    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

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...