My blood work came back positive for Celiacs the day I landed for a 5 month job in another Country. What now? : )

[JBcam]

Hi everyone!

Over the past year I have been experiencing some mild fatigue (like 85%).. After going back and forth with my Dr. and him running a ton of blood work my latest results came back positive for Celiacs. A bit more about me and my situation. No one in my family has tested positive in the past (my mom did a test recently and came back negative). Mild fatigue is my only symptom other than general digestive issues (bloating and constipation). Both of which are hard to tell because of my job and the stress that comes along with it. 

Here are my results:

Gluten IgE: <0/10

Gluten IgE Ab RAST class, Ser: 0

Gluten IgG: 10.6

Endomysial AB SCR IgA w/ Rlfx to TO Titer: Positive

Endomysial Antibody Titer: 1:20

Immunoglobulin A (IgA): 105

Tissue Transglutaminase (tTG) IgA: 19

Here's the kicker! The day I received my results was the same day I started a two week quarantine for a 5 month job in Asia. Awesome right?! We tried multiple times to virtually visit a Gastro but most were not taking virtual appointments anymore and the ones that were did not allow me to visit because I was in another country.  So after my wife and I did some research we decided that I just go gluten-free as best I can. Thankfully the hotel I was quarantining in had gluten-free options. Also, I work in the film industry so trying to talk to the caterers to let them know I need a special meal is quite a feat. I started the job in a hotel but now I am in an apartment so I am able to prepare my own food and shop at the grocery store. Looking back I can almost guarantee there was cross contamination. This job is quite crazy physically and mentally so I am still tired so it's hard to tell if I still have fatigue from that or if I am just not being fully gluten-free. 

We have been trying to make a Gastro appt for when I return in mid Dec but it is insane how busy these places are. Anyone good is booked months in advance!

I have some preliminary questions I probably should have asked months ago but I guess it's better late than never!

1. With the blood results I have it seems clear that I have Celiacs. We have read that I should still get an Endo. What would be the point of that if my blood work is as it is?

2. What determines the final diagnosis of "Celiac" - The blood work or the Endo?

3. I have been eating gluten-free the past few months.. If there is a chance I need to still do an Endo should I stop being gluten-free for 5-6 weeks?

Thank you in advance for reading this. Forgive me for the length! Any useful information would be greatly appreciated! It's great to see how the community has come together to support each other!

Sincerely, 

JB

 

[trents]

43 minutes ago, JBcam said:

Hi everyone!

Over the past year I have been experiencing some mild fatigue (like 85%).. After going back and forth with my Dr. and him running a ton of blood work my latest results came back positive for Celiacs. A bit more about me and my situation. No one in my family has tested positive in the past (my mom did a test recently and came back negative). Mild fatigue is my only symptom other than general digestive issues (bloating and constipation). Both of which are hard to tell because of my job and the stress that comes along with it. 

Here are my results:

Gluten IgE: <0/10

Gluten IgE Ab RAST class, Ser: 0

Gluten IgG: 10.6

Endomysial AB SCR IgA w/ Rlfx to TO Titer: Positive

Endomysial Antibody Titer: 1:20

Immunoglobulin A (IgA): 105

Tissue Transglutaminase (tTG) IgA: 19

Here's the kicker! The day I received my results was the same day I started a two week quarantine for a 5 month job in Asia. Awesome right?! We tried multiple times to virtually visit a Gastro but most were not taking virtual appointments anymore and the ones that were did not allow me to visit because I was in another country.  So after my wife and I did some research we decided that I just go gluten-free as best I can. Thankfully the hotel I was quarantining in had gluten-free options. Also, I work in the film industry so trying to talk to the caterers to let them know I need a special meal is quite a feat. I started the job in a hotel but now I am in an apartment so I am able to prepare my own food and shop at the grocery store. Looking back I can almost guarantee there was cross contamination. This job is quite crazy physically and mentally so I am still tired so it's hard to tell if I still have fatigue from that or if I am just not being fully gluten-free. 

We have been trying to make a Gastro appt for when I return in mid Dec but it is insane how busy these places are. Anyone good is booked months in advance!

I have some preliminary questions I probably should have asked months ago but I guess it's better late than never!

1. With the blood results I have it seems clear that I have Celiacs. We have read that I should still get an Endo. What would be the point of that if my blood work is as it is?

2. What determines the final diagnosis of "Celiac" - The blood work or the Endo?

3. I have been eating gluten-free the past few months.. If there is a chance I need to still do an Endo should I stop being gluten-free for 5-6 weeks?

Thank you in advance for reading this. Forgive me for the length! Any useful information would be greatly appreciated! It's great to see how the community has come together to support each other!

Sincerely, 

JB

 

It is difficult to tell from the numbers you supplied if your results are strongly positive because you did not supply reference ranges. Reference ranges vary from lab to lab. Therefore, an endoscopy with biopsy would be appropriate. The endoscopy/biopsy is considered the gold standard of celiac diagnosis. In the UK if your tTG-IGA score is 10x normal many doctors will forego  the endoscopy/biopsy but many docs in the USA do not follow that protocol. Now here this, now here this: If you start the gluten free diet before testing (either the antibody blood tests or the endoscopy/biopsy) you allow healing to take place and that will likely invalidate testing. Both kinds of diagnostic tests measure damage to the small bowel villi and when you mitigate the damage by going gluten free before testing you likely invalidate the tests.

[Scott Adams]

Given everything you've described, and the fact that you're in another country for so long, it probably makes sense to just stay gluten-free. Since you were not eating gluten for a while before your celiac tests, it's likely your results would have been much higher than were recorded. 

[JBcam]

9 hours ago, trents said:

It is difficult to tell from the numbers you supplied if your results are strongly positive because you did not supply reference ranges. Reference ranges vary from lab to lab. Therefore, an endoscopy with biopsy would be appropriate. The endoscopy/biopsy is considered the gold standard of celiac diagnosis. In the UK if your tTG-IGA score is 10x normal many doctors will forego  the endoscopy/biopsy but many docs in the USA do not follow that protocol. Now here this, now here this: If you start the gluten free diet before testing (either the antibody blood tests or the endoscopy/biopsy) you allow healing to take place and that will likely invalidate testing. Both kinds of diagnostic tests measure damage to the small bowel villi and when you mitigate the damage by going gluten free before testing you likely invalidate the tests.

My apologies! Shows how much I know about this.. Here are my levels with ranges..

Gluten IgE: <0/10 (Standard range kU/L)

Gluten IgE Ab RAST class, Ser: 0

Gluten IgG: 10.6 (Standard range <2.0 mcg/mL)

Endomysial AB SCR IgA w/ Rlfx to TO Titer: Positive (Standard range: Negative)

Endomysial Antibody Titer: 1:20 (Standard range: <1:5 titer)

Immunoglobulin A (IgA): 105 (Standard range 37-310)

Tissue Transglutaminase (tTG) IgA: 19 (Standard range U/mL <4 No Antibody detected, > Or = 4 Antibody detected)

 

[JBcam]

1 hour ago, Scott Adams said:

Given everything you've described, and the fact that you're in another country for so long, it probably makes sense to just stay gluten-free. Since you were not eating gluten for a while before your celiac tests, it's likely your results would have been much higher than were recorded. 

Hi Scott,

thank you for your reply! My apologies for not being more clear but I was in fact eating gluten before my Celiac blood work was done. I was eating gluten all the time actually! So the blood work is based on a fully gluten diet. The idea of Celiac never crossed my mind before my Dr. just did this Celiac blood panel.

 

I realize I did not put my ranges for my results so here they are:

 

Gluten IgE: <0/10 (Standard range kU/L)

Gluten IgE Ab RAST class, Ser: 0

Gluten IgG: 10.6 (Standard range <2.0 mcg/mL)

Endomysial AB SCR IgA w/ Rlfx to TO Titer: Positive (Standard range: Negative)

Endomysial Antibody Titer: 1:20 (Standard range: <1:5 titer)

Immunoglobulin A (IgA): 105 (Standard range 37-310)

Tissue Transglutaminase (tTG) IgA: 19 (Standard range U/mL <4 No Antibody detected, > Or = 4 Antibody detected)

[trents]

The tTG-IGA is the most important test, combining good sensitivity with good specificity for celiac disease. It is considered to be the centerpiece test of the celiac antibody panel. The number aren't dramatically high but any positive in that test points to celiac disease.

[Scott Adams]

Yes, you have 2 very strong positive test results, and even if just one were positive it would indicate celiac disease:

• Gluten IgG: 10.6 (Standard range <2.0 mcg/mL)
• Tissue Transglutaminase (tTG) IgA: 19 (Standard range U/mL <4 No Antibody detected, > Or = 4 Antibody detected)

It's possible that your doctor may want you to do an endoscopy to confirm the diagnosis, however, given your circumstances and not being where you can do that makes me think that you may just want to go gluten-free now, and if you really want to you could do a gluten challenge and eat gluten daily for 2 weeks (2 sliced of wheat bread each day) and do the biopsy when you get back.

Currently in Europe they are diagnosing CD without an endoscopy if any blood test is positive and 10X the normal level. You have 2 different tests that are each over 5x the level that denotes celiac disease, so you're close to that level.