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 questions

Clarice

By Clarice
in Dermatitis Herpetiformis

Recommended Posts

Clarice Newbie
Clarice
Posted

So, I've had a skin condition for years which looks like DH but blood tests for it come back normal.  High doses of steroids or of immuno-suppressants work well to clear my skin, but as soon as they are reduced the inflammation returns.  I tried a gluten free diet for a month, during which my skin seemed to set on fire even more.  My dermatologist says if my problem was DH then I would have had a positive result from going gluten free for four weeks, although information on the internet suggests it takes at least 6 months. 

Does anyone have some experience of something like this?  Do I believe my dermatologist or the internet???

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Has your derm ever done a dh biopsy? BTW, it's not taken ON a lesion, it's taken on clear skin adjacent to a fresh lesion. I bet your derm doesn't know that. I bet if you ask for a dh biopsy he will take it right on top of a lesion. Ditch him & get a derm who knows about celiac & dh & how to properly take a biopsy for it.

The antibodies can stay under the skin for years. The derm is wrong. 

Please describe how the rash acts & what it feels like.

arthurdigbysellers Newbie
arthurdigbysellers
Posted

Person above me is correct. You need a skin biopsy, and it must be performed correctly. I never had a positive blood test but my biopsy came up positive for DH.

Going gluten-free for a month usually won't  clear up DH. It commonly takes ~6 months, and this only on a very strict gluten-free diet. Any exposure to even small amounts of gluten (through cross-contamination, etc) can lead to flareups. 

 

 

squirmingitch Veteran
squirmingitch
Posted

60% of celiacs with dh test negative on the celiac blood work. Fact. 

Open Original Shared Link

Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease.

emma6 Enthusiast
emma6
Posted

maybe check exactly which blood tests you had done as well if the dermatologist doesn't know much about celiac its possible they didn't run enough

squirmingitch Veteran
squirmingitch
Posted

The steroids can cause false negatives on both the celiac blood panel as well as the dh biopsy too.

Here is the current full celiac serum panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver. 😺 I react to nutritional yeast the same way as if I were glutened. Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten. The proteins in rice, corn (maize), and chicken meat have them as well. Some pe...
    2. trents
      - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people...
    3. ainsleydale1700
      - ainsleydale1700 replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      Thank you, that is helpful!
    4. Scott Adams
      - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its...
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,435
    • Most Online (within 30 mins)
      7,748
    LexiBusch
    Newest Member
    LexiBusch
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Dried Chickpeas

      By knitty kitty · Posted

      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
    • trents
      Confused about HLA-DQ Celiac gene test result

      By trents · Posted

      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you, that is helpful! 
    • Scott Adams
      Confused about HLA-DQ Celiac gene test result

      By Scott Adams · Posted

      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      Dried Chickpeas

      By Aretaeus Cappadocia · Posted

      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
×
×
  • 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.