Confused with celiac blood test results

[atomeye]

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. Based on the what I've read, the endoscopy test requires a gluten load for a few weeks, which definitely will throw my sugars into a roller coaster. Before I changed my diet to plant-based around two years ago, I did have a good amount of abdominal distress (constipation, bloating, loose stools, etc.). 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.

Genetics:

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

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

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

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? Even if I decide to move forward with the endoscopy and results are inconclusive, should I still eliminate gluten based on link to Type 1, positive genes and antibodies showing up? 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 even if it's not full out celiac disease at this time, the warning signs are already present.

Thanks again for reading my post.

 

[AndBreathe]

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. Based on the what I've read, the endoscopy test requires a gluten load for a few weeks, which definitely will throw my sugars into a roller coaster. Before I changed my diet to plant-based around two years ago, I did have a good amount of abdominal distress (constipation, bloating, loose stools, etc.). 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.

Genetics:

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

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

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

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? Even if I decide to move forward with the endoscopy and results are inconclusive, should I still eliminate gluten based on link to Type 1, positive genes and antibodies showing up? 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 even if it's not full out celiac disease at this time, the warning signs are already present.

Thanks again for reading my post.

Antibodies testing isn't a simple things. I have had LOTS of these tests, due to family history and my apparent bucking of familial trends. Several of my antibodies are inconclusive, and I have had a number of varyingly informative discussions relating to them.

I live a gluten-free life. My coeliac panel was inconclusive, by my Endo agreed that carbing up for a further tests would not be reflective of my day to day life. His conclusion was that I should adopt a gluten free lifestyle, because ........."so many people with antibody issues do very well on it....". Whilst T1 and coeliac often coexist, so does T1 and thydoing or coeliac and thyroid. More simply antibody disorders often come in pairs or multiples.

I feel the better for wholly banishing gluten, so don't find it an issue to adhere to it. The unfortunate thing about gluten is that it is something you must desist from in total. "A bit every now and again" is unhelpful, and in fact it takes several weeks to garner an indication whether going gluten-free is beneficial.

One thing I will say though is if you are experiencing abdo pain surrounding ingestion of gluten it would be worthwhile ascertaining whether you have ulcerations/damage to your gut because if you do you really wouldn't be wise to ignore it.

On more general notes, it could be worthwhile asking for a full explanation if where your panel sits, relating to the general population. That just helps clarify what you might need to be extra mindful of. For example for some antibodies a decent swathe of the general population will have borderline and weak positive results which are not of medical concern.

I'm not sure any of that helps.

 

[atomeye]

I live a gluten-free life. My coeliac panel was inconclusive, by my Endo agreed that carbing up for a further tests would not be reflective of my day to day life. His conclusion was that I should adopt a gluten free lifestyle, because ........."so many people with antibody issues do very well on it....". Whilst T1 and coeliac often coexist, so does T1 and thydoing or coeliac and thyroid. More simply antibody disorders often come in pairs or multiples.

Thank you for replying. I kinda feel the same way and I'm sure my Endo will most likely have the same opinion. For the past few years, my diet has consisted of less than 10% gluten; therefore, cutting it out shouldn't be a huge issue.

The tGT-iga antibody test which I tested positive for seems to be super sensitive and highly specific. Therefore, even if I don't have full blown celiac, my bloodwork is showing a gluten intolerance.

I have a GI appointment tomorrow. Hopefully I can get some of my questions answered.

 

[AndBreathe]

Thank you for replying. I kinda feel the same way and I'm sure my Endo will most likely have the same opinion. For the past few years, my diet has consisted of less than 10% gluten; therefore, cutting it out shouldn't be a huge issue.

The tGT-iga antibody test which I tested positive for seems to be super sensitive and highly specific. Therefore, even if I don't have full blown celiac, my bloodwork is showing a gluten intolerance.

I have a GI appointment tomorrow. Hopefully I can get some of my questions answered.

If/when you go GF, please do invest time in researching the sneaky stuff with hidden gluten - like most cola drinks, soy sauce and just lots of other stuff.

For me, going low carb was much simpler than totally banishing gluten; not from the perspective of cravings, or missing foodstuffs, or drinks, but just some of the really sneaky places it hides.

I'm still of the opinion it is worth enquiring where your tGT-iga antibody result places you against the population.

Good luck with it all.

 

[Melgar]

@atomeye and @AndBreathe I am jumping on this thread, as I am debating on getting tested for Coeliac. I have for the longest time been slightly sensitive to gluten, but over the last few months it ramped up. What I thought was lactose intolerance causing incessant coughing, bloating, acid reflux, IBS and stomach ache, and pooping 10 times a day with loose stools was, in fact, gluten causing these symptoms. I should add I am lactose intolerant, but clearly it was not the main culprit. So I went totally gluten free. Now I cannot tolerate any gluten what so ever. Yesterday I had a very small bite of a sweet chocolate coconut bar, small because I didn't want to bump up my sugars, only to find that the coconut bar contained gluten. Within seconds I was coughing and then I was throwing up. My daughter tested positive for coeliac when she was 16. It manifested when she was just 3 years old. It took years before they could confirm Coeliac. The thing is how on earth do you get tested for Coeliac if you can't keep it down long enough to be tested? And yes, gluten is in so many things, both in food and non food products like body care products. Edit for a typo and sorry about the bold type face I can't undo the bold! ​

 

[AndBreathe]

@atomeye and @AndBreathe I am jumping on this thread, as I am debating on getting tested for Coeliac. I have for the longest time been slightly sensitive to gluten, but over the last few months it ramped up. What I thought was lactose intolerance causing incessant coughing, bloating, acid reflux, IBS and stomach ache, and pooping 10 times a day with loose stools was, in fact, gluten causing these symptoms. I should add I am lactose intolerant, but clearly it was not the main culprit. So I went totally gluten free. Now I cannot tolerate any gluten what so ever. Yesterday I had a very small bite of a sweet chocolate coconut bar, small because I didn't want to bump up my sugars, only to find that the coconut bar contained gluten. Within seconds I was coughing and then I was throwing up. My daughter tested positive for coeliac when she was 16. It manifested when she was just 3 years old. It took years before they could confirm Coeliac. The thing is how on earth do you get tested for Coeliac if you can't keep it down long enough to be tested? And yes, gluten is in so many things, both in food and non food products like body care products. Edit for a typo and sorry about the bold type face I can't undo the bold! ​

That‘s a hard one.

When my Endo, whom I was seeing privately at the time I imme disclosed my LC lifestyle and stated I’d very much rather not eat any more gluten than I already did - which was only in the obscure stuff, like Worcestershire sauce, soy sauce etc. he was fine with that as glutening up would not reflectthe way I live my life. I was asymptomatic.

With your symptoms, and maybe prepare a bit of a food diary for, say a week, I’d think they’d want to run tests. If not, then if you can afford it, I’d suggest seeing someone privately. If you are candid with him, he can write to your GP to instruct as many bloods as he wants to shake a stick at, and if a colonoscopy or whatever is required, he could adopt you to his NHS list.

I didn’t have a colonoscopy but my Endo advised strongly going strictly gluten as many with AI conditions do extremely well on gluten free.

A firm diagnosis is helpful, but the major treatment for coeliac is a total gluten avoidance.

 

[Melgar]

That‘s a hard one.

When my Endo, whom I was seeing privately at the time I imme disclosed my LC lifestyle and stated I’d very much rather not eat any more gluten than I already did - which was only in the obscure stuff, like Worcestershire sauce, soy sauce etc. he was fine with that as glutening up would not reflectthe way I live my life. I was asymptomatic.

With your symptoms, and maybe prepare a bit of a food diary for, say a week, I’d think they’d want to run tests. If not, then if you can afford it, I’d suggest seeing someone privately. If you are candid with him, he can write to your GP to instruct as many bloods as he wants to shake a stick at, and if a colonoscopy or whatever is required, he could adopt you to his NHS list.

I didn’t have a colonoscopy but my Endo advised strongly going strictly gluten as many with AI conditions do extremely well on gluten free.

A firm diagnosis is helpful, but the major treatment for coeliac is a total gluten avoidance.

Unfortunately, Canada does not have private health care else I would go that route. I will push for the tests but as I said it is very difficult to test as I am now unable to tolerate any gluten. It was the same with my daughter. I have gone gluten free which has helped a lot with my symptoms. Hidden glutens are the main issue and they bite within minutes of consuming them. I will be returning to the Wales later this year and taking residency. No more frigid winters I am lucky as I have both Canadian and UK citizenship. Yes, a food diary is a great idea. I am waiting on an appointment to see an endo but the health care system is messed up here post COVID.

 

[AndBreathe]

@atomeye and @AndBreathe I am jumping on this thread, as I am debating on getting tested for Coeliac. I have for the longest time been slightly sensitive to gluten, but over the last few months it ramped up. What I thought was lactose intolerance causing incessant coughing, bloating, acid reflux, IBS and stomach ache, and pooping 10 times a day with loose stools was, in fact, gluten causing these symptoms. I should add I am lactose intolerant, but clearly it was not the main culprit. So I went totally gluten free. Now I cannot tolerate any gluten what so ever. Yesterday I had a very small bite of a sweet chocolate coconut bar, small because I didn't want to bump up my sugars, only to find that the coconut bar contained gluten. Within seconds I was coughing and then I was throwing up. My daughter tested positive for coeliac when she was 16. It manifested when she was just 3 years old. It took years before they could confirm Coeliac. The thing is how on earth do you get tested for Coeliac if you can't keep it down long enough to be tested? And yes, gluten is in so many things, both in food and non food products like body care products. Edit for a typo and sorry about the bold type face I can't undo the bold! ​

Has your Doctor actually refused to conducts any tests, or are you resisting asking for tests, due to the usual dietary requirements beforehand? I'm not entirely clear on that.

 

[Melgar]

Has your Doctor actually refused to conducts any tests, or are you resisting asking for tests, due to the usual dietary requirements beforehand? I'm not entirely clear on that.

No my Dr hasn't refused to authorise tests but neither did she suggest them. I have to get my head around eating gluten and feeling like s*** for weeks, and that's if I can keep the gluten down and not puke it up. I am, however, going to ask her for the test for biomarkers. If I have those then the chances are very high I have coeliac, if I don't then it is likely non coeliac gluten sensitivity (NCGS). Either way I am unable to tolerate any gluten.

 

[AndBreathe]

No my Dr hasn't refused to authorise tests but neither did she suggest them. I have to get my head around eating gluten and feeling like s*** for weeks, and that's if I can keep the gluten down and not puke it up. I am, however, going to ask her for the test for biomarkers. If I have those then the chances are very high I have coeliac, if I don't then it is likely non coeliac gluten sensitivity (NCGS). Either way I am unable to tolerate any gluten.

To be honest I would not start eating gluten and making myself ill. I would simply go to her, explain my concerns and ask for testing, based on your symptoms and see what she says.

if she says yes, you have a choice whether to eat some gluten or not, it you won’t have made yourself unwell in the process. The only way you could be tripped up there would be if the test were done same day, but even then, my GP doesn’t draw blood, unless it is very urgent. I am instructed to book an appointment for blood draws.

if your GP refuses to test you, I would ask him/her for the rationale behind the refusal, then you have something to argue against, or at worst, ask for a second opinion, however, again, you have not made yourself unwell in the process.

 

[Melgar]

To be honest I would not start eating gluten and making myself ill. I would simply go to her, explain my concerns and ask for testing, based on your symptoms and see what she says.

if she says yes, you have a choice whether to eat some gluten or not, it you won’t have made yourself unwell in the process. The only way you could be tripped up there would be if the test were done same day, but even then, my GP doesn’t draw blood, unless it is very urgent. I am instructed to book an appointment for blood draws.

if your GP refuses to test you, I would ask him/her for the rationale behind the refusal, then you have something to argue against, or at worst, ask for a second opinion, however, again, you have not made yourself unwell in the process.

Thanks for your suggestions. She wouldn't refuse me, but yes you are absolutely right I will not make myself ill over it when the results of either a positive test or a negative test means abstaining from any gluten regardless.

 

[AndBreathe]

Thanks for your suggestions. She wouldn't refuse me, but yes you are absolutely right I will not make myself ill over it when the results of either a positive test or a negative test means abstaining from any gluten regardless.

I guess the challenge is what you feel you would achieve by a diagnosis, and how you would live your life differently?

I am not for a nanosecond suggesting your symptoms don't warrant investigation and/or attention.

 

[Ebs]

Hi thought I'd just give my thoughts. My daughter has coeliac disease. She was 7 when diagnosed, now 14. Having been through the whole awful, difficult process with her I would say that in the UK anyway there are advantages to an official diagnosis. She gets regular checkups every year with a consultant as coeliacs are more likely to have vitamin deficiencies (when diagnosed she had awfully low iron). They literally check every vitamin you can imagine. She will get regular dexa scans as she gets older, can see a dietician whenever we like. You can get some prescription food. They also keep an eye on other blood markers linked to autoimmune disease (this is important as I have type 1 diabetes and an under active thyroid. Just a few of my thoughts.

 

[becca59]

Blood test or tube down the throat are tests for coeliac.

 

[Melgar]

Hi thought I'd just give my thoughts. My daughter has coeliac disease. She was 7 when diagnosed, now 14. Having been through the whole awful, difficult process with her I would say that in the UK anyway there are advantages to an official diagnosis. She gets regular checkups every year with a consultant as coeliacs are more likely to have vitamin deficiencies (when diagnosed she had awfully low iron). They literally check every vitamin you can imagine. She will get regular dexa scans as she gets older, can see a dietician whenever we like. You can get some prescription food. They also keep an eye on other blood markers linked to autoimmune disease (this is important as I have type 1 diabetes and an under active thyroid. Just a few of my thoughts.

My daughter suffered too. When she was a toddler all the other kids would eat pizza but my daughter cried and said it gave her tummy ache, it wasn't until she was 16 that she finally got a diagnosis of coeliac disease. I have been sensitive to gluten but not enough for me to seek help. In the past couple of months it has got much worse and now I cannot tolerate anything with gluten in, even a very small amount, else I vomit, bloat, cough and get irritable bowl. In Canada you get a disability tax credit for Coeliac disease, so financially it is worth it.

 

[Melgar]

Blood test or tube down the throat are tests for coeliac.

About 25 years ago I got duodenal ulcers, they bled and I got admitted into hospital. They suspected H. Pylori. I had the tube down the throat and photos taken. Negative for H.Pylori. About 6 years later, same thing, bleeding ulcers, tube down the throat, negative for H. Pylori. No mention of damaged small intestines. All these years later I cannot tolerate any gluten and I tested positive for lactose intolerance. Do I want to bother with the biopsy, not sure. I am now on a strict gluten free diet and I am so much better for it, very few symptoms, but not totally symptom free. Just a few months ago I would say I didn't have coeliac as although I wasn't comfortable with gluten it wasn't that bad, but this level of gluten intolerance came out of nowhere. I am a very recent T2 diabetic, my brother is T1.