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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?

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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.

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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!

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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 .

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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

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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!!

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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

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

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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