Help with test results?

[Nutmeg1186]

Tests: (1) TISSUE TRANSGLUTAMINASE ANTIBODY, IGG,IGA (11073) TISSUE TRANSGLUTAMINASE AB, IGG
<1.0 U/mL
TISSUE TRANSGLUTAMINASE AB, IGA <1.0 U/mL
Tests: (2) IMMUNOGLOBULIN A (539) IMMUNOGLOBULIN A 281 mg/dL
Tests: (3) ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER (15064) ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER
NEGATIVE NEGATIVE

 

I understand it’s a negative test and it’s not diagnostic with just this test alone but I was wondering if anyone could give me any insight into the numbers and what they mean? I have had all of the symptoms of celiac for several years now including DH. 

[trents]

The lab report is oddly presented. I can't make heads or tales of the format. The only thing I can say for sure is that "negative" is found twice on the same line at the end of the report while there seem to be three tests that were run. Not sure which of those the two negatives apply to. And I do not see "positive" at all.

One thing I can state with confidence is that there is no known cause for DH other than celiac disease. Has your DH diagnosis been confirmed?

Were these tests run by dermatologist or some other kind of physician?

[Nutmeg1186]

1 minute ago, trents said:

The lab report is oddly presented. I can't make heads or tales of the format. The only thing I can say for sure is that "negative" is found twice on the same line at the end of the report while there seem to be three tests that were run. Not sure which of those the two negatives apply to. And I do not see "positive" at all.

One thing I can state with confidence is that there is no known cause for DH other than celiac disease. Has your DH diagnosis been confirmed?

Were these tests run by dermatologist or some other kind of physician?

I tried to copy and paste from the PDF the doctor sent. I’ll try to break it down a little better 

TISSUE TRANSGLUTAMINASE AB, IGG
<1.0 U/mL

TISSUE TRANSGLUTAMINASE AB, IGA         <1.0 U/mL

IMMUNOGLOBULIN A 281 mg/dL (It says normal range is between 47-310)

ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER = NEGATIVE 

This blood work was done by my general practitioner. DH hasn’t been confirmed by a doc but I have done hours of my own research and Im 100% sure that’s what it is. I have 4 spots of clusters and DH describes them exactly. They itch like CRAZY and scab over then after they have healed it’s left a purple mark. The spot on my fingers look like raised red pinpoints and as it has healed it’s started to peel and crack

[Nutmeg1186]

Just realized how to add a photo. Bear with me I’m a newbie 😂

[trents]

The tTG-IGA is the most common test run  for celiac disease diagnosis and since it has such a small value I assume it to be negative, though you give no reference range for what is normal. It supposedly combines good sensitivity with good specificity.

The Immunoglobulin A I believe is just total IGA count and it is in the normal range. Low total IGA values can skew individual IGA values toward the negative side. So, that is not an issue.

The ENDOMYSIAL ANTIBODY SCR is the most specific test available for celiac disease and it is negative.

The TTG-IGG test is run for celiac disease that is run when total IGA is low. Your very low value would seem to indicate a negative result although again, you do not give a reference range.

 

Had you already begun eating gluten free when these tests were run? If so, that would likely explain the negative results.

The test report format is still very weird. Not your fault.

[trents]

What are the large numbers in parentheses? Are they catalog numbers identifying the test or are they actual test values?

[Nutmeg1186]

1 minute ago, trents said:

The tTG-IGA is the most common test run  for celiac disease diagnosis and since it has such a small value I assume it to be negative, though you give no reference range for what is normal. It supposedly combines good sensitivity with good specificity.

The Immunoglobulin A I believe is just total IGA count and it is in the normal range. Low total IGA values can skew individual IGA values toward the negative side. So, that is not an issue.

The ENDOMYSIAL ANTIBODY SCR is the most specific test available for celiac disease and it is negative.

The TTG-IGG test is run for celiac disease that is run when total IGA is low. Your very low value would seem to indicate a negative result although again, you do not give a reference range.

 

Had you already begun eating gluten free when these tests were run? If so, that would likely explain the negative results.

No I have been eating gluten like normal. I’m so confused because I can’t find a reference range anywhere on my results. I’m going to see a gastroenterologist soon and hopefully he can run his own tests or decipher these more clearly. Thanks so much for your feedback Trent! 

2 minutes ago, trents said:

What are the large numbers in parentheses? Are they catalog numbers identifying the test or are they actual test values?

I have no idea that was one of my questions as well

[trents]

Realize that what these tests are measuring is antibodies produced by inflammation in response to gluten consumption. If you cut back significantly or eliminate gluten intake beforehand you sabotage the purpose of the test. That applies to the blood tests and the endoscopy/biopsy.

The official guidelines for a pretest gluten challenge is:

For the blood antibody test: daily consumption of an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks leading up to the test.

For the endoscopy/biopsy: daily consumption of an amount of gluten equivalent to two slices of wheat bread for at least two weeks leading up to the test.

 

Many doctors, even GI docs, fail to tell their patients this or don't know to tell them.

Edited October 14, 2021 by trents

[Nutmeg1186]

16 minutes ago, trents said:

Realize that what these tests are measuring is antibodies produced by inflammation in response to gluten consumption. If you cut back significantly or eliminate gluten intake beforehand you sabotage the purpose of the test. That applies to the blood tests and the endoscopy/biopsy.

The official guidelines for a pretest gluten challenge is:

For the blood antibody test: daily consumption of an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks leading up to the test.

For the endoscopy/biopsy: daily consumption of an amount of gluten equivalent to two slices of wheat bread for at least two weeks leading up to the test.

 

Many doctors, even GI docs, fail to tell their patients this or don't know to tell them.

I have been eating like normal before I had the test done. Not necessarily doing a “gluten challenge”. That’s definitely something I’ll keep in mind before I see the gastrointestinal doctor. Thanks!

[Scott Adams]

I just wanted to point out that even though your celiac disease screening indicates that you don't have it, you could still have non-celiac gluten sensitivity, which ~10x more people have than celiac disease, although there currently isn't a screening for it available (they are working on it). So if the reason you got this test was due to symptoms that might be associated with gluten consumption, then you still may want to try out a gluten-free diet for a few months to see if those symptoms go away.

[Wheatwacked]

Some people with DH will still have negative antibody results.  Get your DH biopsied by a doctor familiar with doing DH biopsies

Quote

DH is considered the specific cutaneous manifestation of celiac disease, and the most recent guidelines of celiac disease have stated that, in celiac patients with a proven DH, a duodenal biopsy is unnecessary for the diagnosis   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4435051/ 

 

[Nutmeg1186]

2 hours ago, Wheatwacked said:

Some people with DH will still have negative antibody results.  Get your DH biopsied by a doctor familiar with doing DH biopsies

 

I was wondering about that. I have an appointment with a gastroenterologist next week. I’ll ask if he can do one. Thanks!

[Wheatwacked]

A DH biopsy would be more in the realm of dermatology