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

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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

    2. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • 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.