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My First Results - Please Review

SuzyQ2

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SuzyQ2 Rookie
SuzyQ2
Posted

Hi there

Here are my first blood test results:

Anti Gliadin IgA <5U/ml (0-19)

Anti Gliadin IgG <5U/ml (0-19)

Anti Tissue Transglutaminase IgA 66 U/ml (0-11)

Endomysial IgA (Screen 1:10): Negative

Supplementary Anti Tissue Transglutaminase assay: Negative

What does all this mean?

I have since had an Upper Endoscopy with showed normal results.

I'm confused as I have all the symptoms of celiac disease but no scientific evidence I guess?

Can someone provide any advice.

Thank you in advance.

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Tabasco Apprentice
Tabasco
Posted

Hi Suzy,

I am not diagnosed but have an appointment in 2 weeks with a GI doc.

These test results are so confusing aren't they? I found a web site that goes over lab results and I will include the link.

I work in healthcare and I do know that each facility has their own lab ranges. That's why you'll see a range with each result. The website that I have found goes over what each of those tests are looking for or measureing. Generally speaking, if your labs fall out of range then it means something. There's a table that tells you the likelihood of what your test results mean.

Hope this helps.

Open Original Shared Link

nora-n Rookie
nora-n
Posted

Hi, the test most widely used nowadays is the tissue transglutaminase IgA test.

Yours is quite positive.

I think they missed your celiac when they did the bopsiy, because they took not enough samples. latest recommendation now is at least 12-15 samples. that is because celiac is usually patchy.

In the old days, they only would recognize total villous atrophy, all the villi had to be gone everywhere, that is why they did not take so many samples, and in the very early days they only took one sample.

I have seen postings from a few people who got negative endoscopies , who had the pill cam, which showed villi blunting or patchy celiac or celiac at the far end of the small intestine. In a normal endoscopy they only go to the beginning of the small intestine.

Sometimes re-reading the biopsy report shows actual celiac, one person posted that she requested the actual biopsy report some nonths after the negative edoscopy, and it said "predominantly normal, with some blunting". She then exclaimed, villous blunting, that is celiac! noone had noticed that, they had only gotten as far as predominantly normal....

ang1e0251 Contributor
ang1e0251
Posted

Good point, Nora. That just reinforces the practise of always asking for a copy of any testing ordered for you.

SuzyQ2 Rookie
SuzyQ2
Posted
  • Author

Both my Dr and I were very surprised when the biopsies came back normal? Anyway he has ordered another set of blood tests so hopefully I'll get these early next week. They are the genetic tests and also a full blood test, thyroid and diabetes.

I also have outbreaks of a type of dermatitis but I'm not sure if it's DH. How is DH tested?

Anyway I guess if the genetic blood tests come back that I don't have the markers it means that it's probably unlikely that I have celiac disease.

The wait to get these results almost seems too much sometimes!

happygirl Collaborator
happygirl
Posted

Info on testing for DH:

Open Original Shared Link ("What is DH")

Open Original Shared Link

https://www.celiac.com/articles/176/1/Derma...mary/Page1.html

SuzyQ2 Rookie
SuzyQ2
Posted
  • Author

Thank you for your replies. I will let you know how I go next week with my results.

Thank you also for the links - they are very interesting.

Have a good weekend

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captaincrab55 Collaborator
captaincrab55
Posted

SuzyQ2, What Lad did your report?

SuzyQ2 Rookie
SuzyQ2
Posted
  • Author
SuzyQ2, What Lad did your report?

Hi there

I live in Australia and the lab is located in Brisbane.

Suzy

nora-n Rookie
nora-n
Posted

I am negative for DQ2 or 8, but I still have DH (not diagnosed yet, but I am sure) and I do react to gluten, so I might just be DQ1. If one googles Hadjivassiliou, there are several articles by him where they found that 20% of those with gluten ataxia had DQ1.

About 6% only have half of a celiac gene, and might be missed, and about 2% or less have other genes.

They might have negative biopsies, but they do still react to gluten just as much as the typical celiacs.

Those with DQ1 are often much more sensitive to gluten than the DQ2 celiacs....

nora

SuzyQ2 Rookie
SuzyQ2
Posted
  • Author
I am negative for DQ2 or 8, but I still have DH (not diagnosed yet, but I am sure) and I do react to gluten, so I might just be DQ1. If one googles Hadjivassiliou, there are several articles by him where they found that 20% of those with gluten ataxia had DQ1.

About 6% only have half of a celiac gene, and might be missed, and about 2% or less have other genes.

They might have negative biopsies, but they do still react to gluten just as much as the typical celiacs.

Those with DQ1 are often much more sensitive to gluten than the DQ2 celiacs....

nora

Hi Nora,

I got some of my blood tests back yesterday, the full blood count were all in the normal range so now I'm just waiting on my second round of anti tissue transglutaminase results. Hopefully they should be back later this week along with my genetic blood tests.

Just a frustrating waiting game now....

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

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