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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.