Help with test results

[Mommacos]

I am brand new to this forum and understanding DH and celiac. I do not have a diagnosis of celiac. came here because I have a very ITCHY, bumpy rash all over my body. Pictures look just like the pictures I see on this forum and google.  Started on my scalp about 6 weeks ago, and then about a week ago the rash started near my shoulder blades., then has progressed every day to a new region.  hips, ankles, neck, lower back, wrists..you get the picture.  

PCP ran blood tests and here are the results:

Immunoglobulin A, Qn, Serum-  my results 201 mg/dl,  normal range 87 - 352 mg/dL

Deamidated Gliadin Abs, IgA, my results =3 units,  

Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive >30

Deamidated Gliadin Abs, IgG my results = 3 units

Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive >30

t-Transglutaminase (tTG) IgA my results<2 U/mL

Negative 0 - 3
Weak Positive 4 - 10
Positive >10
Tissue Transglutaminase (tTG) has been identified
as the endomysial antigen. Studies have demonstr-
ated that endomysial IgA antibodies have over 99%
specificity for gluten sensitive enteropathy.

t-Transglutaminase (tTG) IgG my results<2 U/mL0 - 5 U/mL

Negative 0 - 5
Weak Positive 6 - 9
Positive >9

 

A punch biopsy was done, and waiting on the results.  Based on what you see above it looks like I am negative for Celiac, right?  Have any of you had this type of panel results and still tested positive for DH through the skin test? 

thanks for your help!  

[trents]

Mommacos, welcome to the forum!

Sometimes celiac disease manifests itself dermally (skin) rather than enterically (gut). Unless there is inflammation in the gut, your serum antibody tests will be negative. 

Having said that, can you take a closeup picture of your rash and post it here. DH has a distinctive look to it and one of the defining characteristics is little blisters I believe. You can also request a biopsy from a dermatologist but you might have to go armed with some information on DH because a lot of dermatologists, like a lot of other doctors, just don't know much about celiac disease.

[cristiana]

Hello Mommacos

Great advice there from Trents.

Do get DH ruled out, but I also wanted to share my experience with you.

Whilst I am a coeliac, I do not have DH.  However, last year I started getting a bumpy, incredibly itchy rash.   It started in my scalp, went down to my neck, then my shoulders, then the small of my back and also along my waistline at belt level.  I wondered if I was developing DH but when I described it to my GP he said to me what I had was a typical presentation for adult eczema.  He didn't even ask to look at it because we were in a lockdown, from memory, and doctors were keeping us at arms length.

I was skeptical but he prescribed an emolient which I used straight after a bath/shower in the morning (avoiding very hot water, and harsh soap by the way - that's important), changed my washing powder to non-biological, and I was told to use a topical steroid cream which I applied 20 mins after putting on the emolient and again before bed.  Within a few days my rash had all but disappeared.

Anyway, whatever the rash was, at that time I had to have some blood tests and my eosophinal count was elevated.  This can happen with allergies and dermatitis.   Have you noticed this in your blood samples?

Cristiana

 

[Mommacos]

  On 9/22/2021 at 4:57 AM, trents said:

Mommacos, welcome to the forum!

Sometimes celiac disease manifests itself dermally (skin) rather than enterically (gut). Unless there is inflammation in the gut, your serum antibody tests will be negative. 

Having said that, can you take a closeup picture of your rash and post it here. DH has a distinctive look to it and one of the defining characteristics is little blisters I believe. You can also request a biopsy from a dermatologist but you might have to go armed with some information on DH because a lot of dermatologists, like a lot of other doctors, just don't know much about celiac disease.

Expand Quote  

Thank you so much for responding.  I have already been to the derm, who did take a punch test to check for DH but waiting on results.  Did she do the test correctly?  I have no idea.  She did tell me that if I am right and it is DH she would give me her medical license.  At least she agreed to test for it! They began me on a Medrol pack last night because I was out of my mind with the itching.  Some of the pix I have are from this morning.  I will see if I can figure out how to post them here!

[Mommacos]

sorry for the delayed response.  I finally figured out how to get pictures uploaded (I think!) pictures 1-3 are from my initial breakout.  pix 4 and 5 are recently.  I was put on high doses of prednisone which reduced my itching tremendously.  some of the bumps have gone away (but not the scars)  I am still itching however.

My puncture test came back as negative. I am in the process of having patch testing done now too, but not really sure that is going to tell me anything.  

I don't want to go gluten free yet, until I know for sure that they don't want to do further gluten testing on me. 

Also had a food sensitivity test done.  all wheat and gluten results were in the low/normal range.

I do have one of the genes for celiac.

Thoughts on the pix and information so far?

[Scott Adams]

It's hard to tell from the images, and the rashes could certainly be caused by other things line shingles or allergies. Do the rashes include tiny, clear blisters that are extremely itchy? Also, it would make sense for you to get a celiac disease blood panel done, and these can be ordered by your doctor, or online for under $100.