Jump to content

  • 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):

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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,119
    • Most Online (within 30 mins)
      10,442
    coeliacmamma
    Newest Member
    coeliacmamma
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Russ H
      New diagnosis

      By Russ H · Posted

      Hello, and welcome to the forum. Getting use to gluten-free eating is a struggle, but it is worth it. Your daughter should begin to feel much better and the fatigue will fade but it can take some time. I am sure you will get lots of suggestions from forum members - we have a few from the UK. I am a bit pushed for time just now but will come back later. Russ
    • Ginarwebb
      Test interpretations

      By Ginarwebb · Posted

      thank you so much for this information .. if I'm reading the results correctly I believe the range was  <15.0 Antibody not detected > or = 15.0 Antibody detected
    • coeliacmamma
      New diagnosis

      By coeliacmamma · Posted

      My 16 year old has just been diagnosed with coeliac, she loves food and is now struggling with the diet. She has a variety of different co editions and thos one just tops the list, she is a musical theatre student at college and loves what she does but fatigue gets in way alot of the time, are there any good amd tasty meals I can k make that will help?  Thanks for reading.
    • BelleDeJour
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By BelleDeJour · Posted

      Thank you so much @suek54 How are you doing today? I spoke too soon yesterday. Something (I can only think gluten-free sweets or a can of soft drink) set me off yesterday. Had a bath, applied some cream, still itching so applied some steroid and was awake until 3am. It's so frustrating. Always 2 steps forward, 1 step back. I am at work now and going to play it very much on the very safe side with food for the next few days.  My derm appointment is less than a week away. I will update on here because I do feel it important to help others. 
    • Scott Adams
      Skin issues

      By Scott Adams · Posted

      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
×
×
  • Create New...