Confused with celiac blood test results

[Atomeye]

Thank for you reading this post.

I recently had some celiac lab work done and the results seem to be inconclusive. My allergist wants me to follow up with a GI doctor to get an endoscopy, but I really don't want to have yet another test. As a bit of background, I've been a Type 1 diabetic for around 30 years but from what I've read and heard from the doctors, celiac and Type 1 diabetes are closely linked.

As for my diet, I currently eat a predominately plant-based diet with minimal gluten. I definitely eat gluten, but probably at most once a day in the form of Ezekiel or Sourdough bread. Every once in a while, I do get a little abdominal discomfort when I consume gluten, but it's not every time. Before I changed my diet to plant-based around two years ago, I did have a good amount of abdominal distress such as bloating and definitely had very loose stools. Back then, I was consuming gluten probably at every meal. Additionally, I've had very low Vitamin D levels for years (more than a decade) which requires me to supplement on a daily basis.

Blood test results are below.

Antibodies:

Deamidated Gliadin Abs IgA , result = 10, Range 0 - 19

Deamidated Gliadin Abs, IgG, result = 24 (high), range 0 - 19

t-Transglutaminase (tTG) IgA, result = 4 (high), range 0 - 3

t-Transglutaminase (tTG) IgG, result = <2, range 0 - 5

Endomysial Antibody IgA, result = Negative

Immunoglobulin A Qn Serum, result = 218, range 90 - 386

Genetics:

DQ2 (DQA1 0501/0505,DQB1 02XX), result = Positive

DQ8 (DQA1 03XX, DQB1 0302), result = Positive

So my question is, are these results enough to determine that I have celiac or are these results elevated based on the fact that I have Type 1 diabetes? The fact that I tested positive for both genes and that my tTG IgA is high (even if it's weak positive) leads me to believe that it is in fact celiac disease.

Thanks again for reading my post.

[cristiana]

Hello Atomeye and welcome to the forum.

I should first say that on the forum I'm not the coeliac numbers expert - sorry!  I'm hoping someone else will chime in soon, but personally I would say it's important to have the tests.   It really is the only way you will know for sure.

As you have been quite rightly told, there is a link between the two conditions.  Indeed, a member of my own family has Type 1 diabetes and every three years is screened for coeliac as a matter of routine here in the UK.  

Although I quite understand your not wanting to do any more testing, it is far better to know.  Managing coeliac disease is quite a bit more complicated than just trying to avoid gluten or going gluten light.  If someone does have coeliac disease and doesn't adopt a strict gluten free diet it can cause serious health issues in the longer term.   If someone doesn't have coeliac disease or Non Coeliac Gluten Sensitivity (NCGS) and gives up gluten, they will be adopting a restricted diet for no reason.

The thought of having an endoscopy can seem a bit overwhelming - I totally understand, been there! - but I've now had three for different reasons and they are really OK.  Although everyone's experience is difference I always ask for a sedative and find it passes almost like a dream.

Normally before a coeliac blood test you will need to consume the equivalent of 2 slices of normal (gluten containing) bread for about 6 weeks, although for an endoscopy I think it is it isn't as long - something to check with your gastroenterologist.  But it has to be sufficient in order for a reaction to gluten to be seen. In my case I chose to eat all the things that would be forbidden if I did have to one day go gluten free - this included Weetabix and chocolate Penguin bars, something very popular in the UK!

Anyway, hope some of the above is helpful.  Forgive me if things go quiet here but it's lunchtime Christmas Eve and we're off out soon.  Will be around on and off over the holidays.

Cristiana

⭐🎄⛪

 

 

Edited December 24, 2022 by cristiana
Clarifying point made re: gluten trial

[Tina E]

24 minutes ago, Atomeye said:

Thank for you reading this post.

I recently had some celiac lab work done and the results seem to be inconclusive. My allergist wants me to follow up with a GI doctor to get an endoscopy, but I really don't want to have yet another test. As a bit of background, I've been a Type 1 diabetic for around 30 years but from what I've read and heard from the doctors, celiac and Type 1 diabetes are closely linked.

As for my diet, I currently eat a predominately plant-based diet with minimal gluten. I definitely eat gluten, but probably at most once a day in the form of Ezekiel or Sourdough bread. Every once in a while, I do get a little abdominal discomfort when I consume gluten, but it's not every time. Before I changed my diet to plant-based around two years ago, I did have a good amount of abdominal distress such as bloating and definitely had very loose stools. Back then, I was consuming gluten probably at every meal. Additionally, I've had very low Vitamin D levels for years (more than a decade) which requires me to supplement on a daily basis.

Blood test results are below.

Antibodies:

Deamidated Gliadin Abs IgA , result = 10, Range 0 - 19

Deamidated Gliadin Abs, IgG, result = 24 (high), range 0 - 19

t-Transglutaminase (tTG) IgA, result = 4 (high), range 0 - 3

t-Transglutaminase (tTG) IgG, result = <2, range 0 - 5

Endomysial Antibody IgA, result = Negative

Immunoglobulin A Qn Serum, result = 218, range 90 - 386

Genetics:

DQ2 (DQA1 0501/0505,DQB1 02XX), result = Positive

DQ8 (DQA1 03XX, DQB1 0302), result = Positive

So my question is, are these results enough to determine that I have celiac or are these results elevated based on the fact that I have Type 1 diabetes? The fact that I tested positive for both genes and that my tTG IgA is high (even if it's weak positive) leads me to believe that it is in fact celiac disease.

Thanks again for reading my post.

Hi, I understand the link between  T1D and celiac. I am actually on the board of a T1D nonprofit, although no one in my family has it, we do have celiac. When my daughter was diagnosed with celiac, her bloodwork numbers were crazy high, so high that no dr insisted on the endoscopy.  When I got tested, my numbers were borderline, so I did get the endoscopy to confirm and have an actual diagnosis in my medical records. That is your choice, but you definitely have to stop eating gluten entirely, set up your safe, gluten free kitchen, and avoid cross contamination.  The affects of celiac if you continue to eat gluten are serious. Good luck.

[trents]

Do you have a first degree relative (parent, sibling or offspring) with celiac disease? If so, your chances of having or developing active celiac disease are almost 50%.

Sourdough wheat products and bread products made from heirloom varieties of wheat are tolerated much better by some celiacs than ordinary wheat products. What gluten you are getting seems to come from these kind of bread products and that could explain the borderline antibody values from your testing. The Mayo Clinic guidelines for a pretest gluten challenge is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to antibody testing and for two weeks leading up to an endoscopy/biopsy.

In the U.S., conscious sedation is usually administered for endoscopies. I have had several of them done and there is no discomfort.

[Atomeye]

Thank you for the replies. Based on what I've read, the t-Transglutaminase (tTG) IgA is super sensitive; therefore, it's probable I do have celiac. I have a virtual appointment with a GI at the beginning of January, which will hopefully lead to an actual diagnosis. 

I'm not really shocked with the test results, just feel a little overwhelmed with it all. Treating and living with Type 1 diabetes is hard enough and now adding another autoimmune disease makes things even more difficult. 

Thanks again for the quick replies on Christmas Eve. It's greatly appreciated.

[Atomeye]

45 minutes ago, trents said:

Do you have a first degree relative (parent, sibling or offspring) with celiac disease? If so, your chances of having or developing active celiac disease are almost 50%.

I don't know of any relatives with the disease, but both genes came back positive, giving me a 1:7 chance of having it.

[trents]

the tTG-IGA is a popular celiac antibody test because it combines good sensitivity with good specificity - and it's an inexpensive test. Still, it misses about 20% of those with celiac disease from white European heritage and about 80% of those from black African heritage. That is the value of having a full celiac panel ordered as opposed to just the tTG-IGA. Then too, there are some other health conditions and some meds that can cause elevated tTG-IGA.

And merry Christmas to your as well.

Edited December 24, 2022 by trents