Question Regarding Celiac Comprehensive Test

[Zerixis]

Hi guys!

 

I am new to the whole celiac world and had a few burning questions.

 

I seem to be in a bit of a weird situation. I have suffered from IBS for many years (went to a gastroenterologist and everything) with no real solution other than to eat smaller portions/avoid too much junk food. I went to a new gastroenterologist last week after a long wait due to an uptick in my IBS symptoms and a blood test noted that I had high (tTG) IgG. The only symptoms that I have/had is frequently having to go to the bathroom some days + frequent gas. I've tried googling a situation like mine but it seems pretty rare since tTG IgG doesn't seem to be a common test if there is no immunoglobulin A deficiency. My test results are as follows:

Deamidated Gliadin Abs, IgA 6 0-19 normal reference

Deamidated Gliadin Abs, IgG 5 0-19 normal reference

t-Transglutaminase (tTG) IgA <2 0-3 reference

t-Transglutaminase (tTG) IgG 7 0-5 normal reference, 6-9 weak positive

Endomysial Antibody IgA Negative

Immunoglobulin A, Qn, Serum 149 90-386 normal reference

 

My problem comes in as I am moving states for a new job opportunity in early January. My gastroenterologist is super booked and hasn't had time to even discuss these results with me (I got the results off of LabCorp,) and said it could take upwards of a week or two for a call back with their thoughts on these results. As a result, I'll most likely be gone at my new job where taking time off/getting an appointment in a major city for a biopsy most likely won't be feasible for some time. As a result, do you think I should just go gluten free for the next few months to be safe? After reading some posts here, I am also thinking about getting the genetics test. As far as I am aware I do not have any other digestive issues other than mild NAFLD but I'm not sure if that has any impact on my readings.

TIA!

[trents]

36 minutes ago, Zerixis said:

Hi guys!

 

I am new to the whole celiac world and had a few burning questions.

 

I seem to be in a bit of a weird situation. I have suffered from IBS for many years (went to a gastroenterologist and everything) with no real solution other than to eat smaller portions/avoid too much junk food. I went to a new gastroenterologist last week after a long wait due to an uptick in my IBS symptoms and a blood test noted that I had high (tTG) IgG. The only symptoms that I have/had is frequently having to go to the bathroom some days + frequent gas. I've tried googling a situation like mine but it seems pretty rare since tTG IgG doesn't seem to be a common test if there is no immunoglobulin A deficiency. My test results are as follows:

Deamidated Gliadin Abs, IgA 6 0-19 normal reference

Deamidated Gliadin Abs, IgG 5 0-19 normal reference

t-Transglutaminase (tTG) IgA <2 0-3 reference

t-Transglutaminase (tTG) IgG 7 0-5 normal reference, 6-9 weak positive

Endomysial Antibody IgA Negative

Immunoglobulin A, Qn, Serum 149 90-386 normal reference

 

My problem comes in as I am moving states for a new job opportunity in early January. My gastroenterologist is super booked and hasn't had time to even discuss these results with me (I got the results off of LabCorp,) and said it could take upwards of a week or two for a call back with their thoughts on these results. As a result, I'll most likely be gone at my new job where taking time off/getting an appointment in a major city for a biopsy most likely won't be feasible for some time. As a result, do you think I should just go gluten free for the next few months to be safe? After reading some posts here, I am also thinking about getting the genetics test. As far as I am aware I do not have any other digestive issues other than mild NAFLD but I'm not sure if that has any impact on my readings.

TIA!

You might find this interesting: https://www.verywellhealth.com/celiac-disease-and-liver-diseases-562618

Ideally, your next diagnostic step would be to have an endoscopy with biopsy done to check for damage to the villi that line the small bowel. This is considered to be the gold standard diagnostic step for celiac disease.

But in view of your job transition and move, it might be more practical to just trial a gluten-free diet. Your symptoms align with celiac disease but there is also the possibility of NCGS (Non Celiac Gluten Sensitivity). The latter is 10x more common than celiac disease and the two share many of the same symptoms. There is no test yet for NCGS. Celiac disease must first be ruled out.

Be aware that any kind of future testing for celiac disease would require you to go back to eating regular amounts of gluten if the testing is to be valid if you decide to trial gluten free. For antibody testing that mean the consumption of two slices of wheat bread (or the gluten equivalent) daily for 6-8 weeks leading up to the blood draw. For the endoscopy/biopsy it would require eating that amount of gluten daily for 2 week prior to the procedure.

This might be helpful as well:

 

Edited December 14, 2022 by trents

[Zerixis]

20 minutes ago, trents said:

You might find this interesting: https://www.verywellhealth.com/celiac-disease-and-liver-diseases-562618

Ideally, your next diagnostic step would be to have an endoscopy with biopsy done to check for damage to the villi that line the small bowel. This is considered to be the gold standard diagnostic step for celiac disease.

But in view of your job transition and move, it might be more practical to just trial a gluten-free diet. Your symptoms align with celiac disease but there is also the possibility of NCGS (Non Celiac Gluten Sensitivity). The latter is 10x more common than celiac disease and the two share many of the same symptoms. There is no test yet for NCGS. Celiac disease must first be ruled out.

Be aware that any kind of future testing for celiac disease would require you to go back to eating regular amounts of gluten if the testing is to be valid if you decide to trial gluten free. For antibody testing that mean the consumption of two slices of wheat bread (or the gluten equivalent) daily for 6-8 weeks leading up to the blood draw. For the endoscopy/biopsy it would require eating that amount of gluten daily for 2 week prior to the procedure.

This might be helpful as well:

 

Thank you for the reply! I will look into those two articles.

 

I'll try my best to get an endoscopy ASAP since it seems its the only way to confirm for sure one way or another. 

[Scott Adams]

If you can't get an endoscopy soon then I think you should go gluten-free for now, and you can go back on gluten at least 2 weeks before if you should decide to get an endoscopy. If the diet relieves your symptoms you may not want to bother with the endoscopy, as this would be your 2nd confirmation that you have celiac disease.

You could also pursue a genetic test to see if you have the markers for celiac disease, which you likely do have. You can do this while on a gluten-free diet.

 

[Zerixis]

42 minutes ago, Scott Adams said:

If you can't get an endoscopy soon then I think you should go gluten-free for now, and you can go back on gluten at least 2 weeks before if you should decide to get an endoscopy. If the diet relieves your symptoms you may not want to bother with the endoscopy, as this would be your 2nd confirmation that you have celiac disease.

You could also pursue a genetic test to see if you have the markers for celiac disease, which you likely do have. You can do this while on a gluten-free diet.

 

Hi! Thanks for the reply!

 

I will definitely try to bring up the genetic test once my gastro finally calls me back. 

 

I spoke to my PCP earlier this morning about the results and he seems to think that its NCGS as only my tTG IgG levels were slightly elevated and I had other blood tests recently with my vitamins coming back normal and my lactoferrin/sedimentation rate/c-reactive etc. all coming back on the very low end.

 

I also had the celiac test back in 2019 when I was having the worst stomach issues and received the same results (without the tTG IgG and DGA tests) so I think that might have also come into play with his thought process. Still waiting to hear back from the gastro though to see what their opinion is.

[Wheatwacked]

On 12/13/2022 at 8:51 PM, Zerixis said:

As far as I am aware I do not have any other digestive issues other than mild NAFLD but I'm not sure if that has any impact on my readings.

Choline deficiency is a leading cause of NAFLD. Choline is one of the many nutrients impacted by Celiac Disease malabsorption, but it the Western world less than 10% get enough in what we eat. Minimum amount RDA would be 4 large eggs or 15 ounces of beef or 10 cups of cooked broccoli a day.

[Zerixis]

14 hours ago, Wheatwacked said:

Choline deficiency is a leading cause of NAFLD. Choline is one of the many nutrients impacted by Celiac Disease malabsorption, but it the Western world less than 10% get enough in what we eat. Minimum amount RDA would be 4 large eggs or 15 ounces of beef or 10 cups of cooked broccoli a day.

Hi! Thanks for the reply!

 

I wasn't sure if I should give an update or not but I might as well since it seems that this post still has a bit of traction. I ended up getting a call a few days after this post and they had an opening for an endoscopy the next morning since someone cancelled. I took it since it was probably my only opportunity for a long time, and the results showed that I had no villi damage at all and a CD3 stain (whatever that is) also came back normal along with a genetic test. They said that I either have a mild gluten intolerance or the blood work was just a rare false positive.

 

As for NAFLD, I think it is moreso due to my unfortunate extreme weight gain over the last few years. I was a healthy weight right before Covid started but ever since then I put on almost 80 pounds and I'm working on losing it now.

 

Thank you for the reply!

[trents]

35 minutes ago, Zerixis said:

Hi! Thanks for the reply!

 

I wasn't sure if I should give an update or not but I might as well since it seems that this post still has a bit of traction. I ended up getting a call a few days after this post and they had an opening for an endoscopy the next morning since someone cancelled. I took it since it was probably my only opportunity for a long time, and the results showed that I had no villi damage at all and a CD3 stain (whatever that is) also came back normal along with a genetic test. They said that I either have a mild gluten intolerance or the blood work was just a rare false positive.

 

As for NAFLD, I think it is moreso due to my unfortunate extreme weight gain over the last few years. I was a healthy weight right before Covid started but ever since then I put on almost 80 pounds and I'm working on losing it now.

 

Thank you for the reply!

Thanks for the update.

[Scott Adams]

On the tTG test it would be very doubtful that it would show a false positive. I would go with possible non-celiac gluten sensitivity, and go gluten-free for a few months to see if it helps with your symptoms.

[trents]

To add to what Scott said, some celiac experts feel that NCGS can be a precursor to celiac disease.

[Zerixis]

It could definitely be some degree of NCGS since my GI and doctor brought that up to me as a possibility after my blood work. 

 

I actually never had any symptoms when eating gluten so that's why everything is pretty confusing for me. I think it was more so just constant IBS symptoms for years and years and my GI was running out of things to try so my new GI gave the blood test to see if it was a possibility. That's partially why I was so caught off guard when one of the numbers came back as positive. I do know that my IBS seems to get worse with stress like having to do a presentation/going somewhere without a bathroom etc. since they would always give me instant stomach issues when I'm in those situations. I was also diagnosed with acid reflux and chronic inflammation of my esophagus from my endoscopy and was told again to eat smaller portions/cut out fast/fried food and following that advice to a T seems to have somehow completely eliminated my symptoms for now. I actually just went on a 20 hour road-trip (each way) and had no symptoms when I had terrible symptoms both ways literally every time I went the last few years. Eating gluten as of now doesn't seem to produce any symptoms for me as I've still been eating it in the same quantity as before (I'm broke until I start working since moving is expensive and a lot of alternative gluten-free foods are pretty expensive) but its definitely something I'm going to be a lot more conscious about going forward.

 

I really appreciate all of your help and comments though guys ❤️ Thank you very much! (And sorry if I've been TMI.)

[Wheatwacked]

I found that getting over the anger of how unfair it is was very hard.

Eating gluten free has been less expensive. Buy real food, not stuff in boxes. Farmers markets for what they have. A $7 watermelon at the supermarket costs only $4 at my nearby farmers market, and its fresher.  Add your own flavors. Vegetables, fruits, meats are all gluten free until somebody "enhances it", puts it in a box and sells it.

46 minutes ago, Zerixis said:

I actually never had any symptoms when eating gluten

These are your symptoms:

47 minutes ago, Zerixis said:

just constant IBS symptoms for years and years...also diagnosed with acid reflux and chronic inflammation of my esophagus...my GI was running out of things