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):

Type Of Doctor

texas flood

By texas flood
in Dermatitis Herpetiformis

Recommended Posts

texas flood Newbie
texas flood
Posted

I have been seeing my family doctor about my rashes for the last few months. All he has told me so far is it's a food allergy and he gave me the DexPak -13 day dose which helped. But of course the intense rash came back right after I stopped taking it. From the pictures I've seen all over the internet and on here, and the descriptions, I am convinced I am having a reaction to gluten.

Is the DH test something any doctor can do, or do I need to see a specialist? I don't want to waste my time tomorrow if he's just going to send me to another doctor. My insurance also does not pay for allergy testing - but I take that as the usual skin prick tests, and not a blood test. Is this correct?

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

If you want to have a shave biopsy of a suspected DH area, you really need a dermatologist, and one who knows something about celiac and DH, because the biopsy is not taken of the lesion but of the clear skin immediately adjacent to a lesion. So many doctors do not take the biopsy sample correctly beause they don't know any better.

squirmingitch Veteran
squirmingitch
Posted

Yup. A dh punch biopsy is what you need. And a derm who knows what the heck they're doing. AND DO NOT GO GLUTEN FREE OR GLUTEN LIGHT UNTIL THE BIOPSY IS DONE & YOU HAVE THE RESULTS BACK & KNOW THE DERM DID IT RIGHT!

cahill Collaborator
cahill
Posted

a derm who knows what the heck they're doing.

yep, unfortunately rarer than one would imagine

I would expand on that by saying : the most important doctor a celiac ( especially if undiagnosed ) can have is a doctor that will leave his ego at the door and will actually pay attention to what you say .

sisterlynr Explorer
sisterlynr
Posted

My PCP referred me to a Dermatologist for a biopsy. I actually had 3 biopsies but they were from the lesion itself. After research she ordered Dapsone for me and due to the good response, along with Gluten free diet, agrees I do have DH Celiac.

I have a great PCP/Internal Med as a doctor! She has other patients with DH but told me I am the worst case she has ever seen.

Ask questions before you go see a doctor. Co-pays and such are way too expensive to waste on Derms that will not test you properly! Good Luck

texas flood Newbie
texas flood
Posted
  • Author

I guess I have a good primary care pyscian. I told him I thought it was gluten and he agreed. So we did the celiac panel. I'll know the results in a day or two. He also referred to me an allergist if we need to go that route. He gave me a cortisone shot as well. Not really sure what that is gonna do, but we'll see!!

squirmingitch Veteran
squirmingitch
Posted

Ppl with dh generally test neg. on the celiac panel.

Read & learn:

Interesting Reading on DH:

http://www.celiac.co...-reading-on-dh/

Descriptions of DH Types:

http://www.celiac.co...ns-of-dh-types/

Help for the Itching, Stinging, Burning, Pain of DH:

http://www.celiac.co...__1#entry823195

DH Photobank:

http://www.celiac.co...-dh-photo-bank/

Newbie 101 for celiacs

http://www.celiac.co...ewbie-info-101/

Furthermore, if the doc didn't do the current FULL panel then you didn't get proper celiac blood testing. Here's the info.:

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

The DGP test was added recently to the full panel.

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

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

Celiac.com Sponsor (A8-M):


texas flood Newbie
texas flood
Posted
  • Author

I have been reading on a lot on here and learning. Thank you.

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. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest ...
    3. Peace lily
      - Peace lily commented on Scott Adams's article in Latest Research
      2

      New Study Reveals How the Immune System Learns Which Foods Are Safe to Eat

      Hi everyone well I don’t understand totally,I look for gluten-free only. I seem to be super sensitive. I had a problem the other day don’t know why it happen . I’m the only that handles my food . My husband has pancreatitis he’s fine with me cooking gluten-free I’ve tried doing both it doesn’t work for me strictly gluten-free kitchen. But he can actu...
    4. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis
      4

      Skin issues

      Thankyou I did find out the Infectious disease is the route to go rather than dermatologist. I did reach out to two major hospitals and currently waiting on approval for one of them in Infectious Diseases to call me. I also did have implants ( I didn't know and sense not properly in my medical. Neither did surgeon)in 2006 and there was a leak 2023 during...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,061
    • Most Online (within 30 mins)
      10,442
    Francisco1007
    Newest Member
    Francisco1007
    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

    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
    • Jmartes71
      Skin issues

      By Jmartes71 · Posted

      Thankyou I did find out the Infectious disease is the route to go rather than dermatologist. I did reach out to two major hospitals and currently waiting on approval for one of them in Infectious Diseases to call me. I also did have implants ( I didn't know and sense not properly in my medical. Neither did surgeon)in 2006 and there was a leak 2023 during the same time I was dealing with covid, digestive issues, eyes and skin.Considering I " should  be fine" not consuming gluten/wheat, taking vitamins for sibo and STILL feeling terrible.It has to be parasites. I also take individual eye drops prescribed, could there be an issue there? Anyways my pcp thinks I need therapy because again they don't acknowledge my digestive issues because in my records it shows im fine, hintz the reason I had to go back to bay area hospital:(  I thought skin issues maybe sibo related but I feel and have seen and seriously trying not to think about it because it's disgusting. 
    • Aretaeus Cappadocia
      Zaalouk moroccan eggplant salad

      By Aretaeus Cappadocia · Posted

      oops. I didn't see that before posting or I would have at least referenced it. The two recipes are pretty similar, but I think the newer one is a little simpler/faster. Next time though I will search more before posting.
×
×
  • Create New...