Gliadin IGA 78

[Elli-]

Hey guys!

 

Recently diagnosed officially after aoiding gluten for 12 years.  It took me 3 doctors to find someone who would come at the issue with a non-biased POV.  I ended up doing a gluten challenge and got a blood test and biopsy.  Today I got a blood test I took last year prior to the gluten challenge and the Gliadin IGA was 78.0.  I have two questions;

1) Dr who ordered the blood test told me a lot of things that were not accurate abt celiac and ruled it out totally.  With a Gliadin IGA of 78, that’s just flat out wrong, isn’t it?  I mean doesn’t it indicate a liklihood of celiac of like 97%?

2) Whatever diet I was eating for 14 yrs was not adequate to what I need to live with celiac based on this test, right?  Just checking. I think that’s what it means and that I need to tighten up my gluten-free diet a little in light of the dx?  

I know a lotta you guys are serious blood test gurus so I’ll put this out there.  Thanks, fam!

[cyclinglady]

Yep, the doctor who told you to disregard the Gliadin IgA result of 78 was completely wrong!  You should have been referred to a GI for an endoscopy!  Hopefully, you will never see this doctor again.  He is probably misdiagnosing many people and I am just not referring to celiac disease!  

If you have been  “gluten free” for 14 years and got the above result and more recently, a positive biopsy, then you have been doing a poor job.  But do not feel bad, the gluten free diet is hard to master and it sounds like you have had no dietary support!  You have the opportunity to learn and improve.  It is never too late!  

Read the Newbie 101 thread located (pinned at top) “Coping” section of this forum.  Stop eating out for the next six months.  Need food on the run?  Grab some gluten free things like a yogurt or banana at the grocery store.   Get a follow up blood test in six months to see if your tests results are going down.  They might not be normal, but they should be going down.  

Ask us for help or ask your GI for a referral to a dietitian who knows about celiac disease.  

 

[squirmingitch]

Always. always, always, always have gluten-free food with you, ALWAYS. Hard boiled eggs, fruits, cheese, raw veggies make great snacks. Never leave home without gluten-free food on you.

[Elli-]

16 hours ago, cyclinglady said:

Yep, the doctor who told you to disregard the Gliadin IgA result of 78 was completely wrong!  You should have been referred to a GI for an endoscopy!  Hopefully, you will never see this doctor again.  He is probably misdiagnosing many people and I am just not referring to celiac disease!  

If you have been  “gluten free” for 14 years and got the above result and more recently, a positive biopsy, then you have been doing a poor job.  But do not feel bad, the gluten free diet is hard to master and it sounds like you have had no dietary support!  You have the opportunity to learn and improve.  It is never too late!  

Read the Newbie 101 thread located (pinned at top) “Coping” section of this forum.  Stop eating out for the next six months.  Need food on the run?  Grab some gluten free things like a yogurt or banana at the grocery store.   Get a follow up blood test in six months to see if your tests results are going down.  They might not be normal, but they should be going down.  

Ask us for help or ask your GI for a referral to a dietitian who knows about celiac disease.  

 

Yeah, I have not been being super strict because I did not know it was celiac disease,  - like I’ll eat gluten-free stuff in a restaurant or whatever and I’m sure some of it was not super clean.  

 

BTW that WAS a GI doctor.  Is that test enough (the 78) plus self reported issues with gluten to dx celiac do you think?  

[cyclinglady]

Well, not according to all the celiac centers around the world.  For a while, they were thinking that a genetic test, a very positive celiac panel and a good response to the celiac diet might be enough to diagnose celiac disease.  They definitely have been implementing this in children in Europe.  It can work.  But for some reason, ( I have not found an answer), they are now back to ordering an endoscopy for a firm diagnosis, even for kids.  Maybe they were missing cancer or other issues like SIBO that can accompany celiac disease.  But that is just layman’s speculation.  As member Gemini states, “I do not wear a white coat.”

Another example is that the University of Chicago used to promote just the TTG tests for screening.  It was supposed to be the best and it would also save money.  Now U of Chicago is listing all the celiac tests.  I guess they figured out that one test did not catch all celiacs (like me) and they left a bunch of sick celiacs undiagnosed.  

Is nothing in life easy?  

You are going to have to decide what is best for you.  

I went though with the endoscopy because I needed to know for sure.  My hubby had been gluten free for 12 years prior.  I knew exactly what a celiac disease diagnosis meant and I was NOT happy with my blood test result.    I was shocked.  I needed to see biopsy results.  I needed to have NO doubt.  But that is me.

Again, you need to determine that for yourself.  I do not know all your health issues, finances, insurance ....you get my drift.  

Had I not had insurance or had to wait 8 months for an endoscopy, I might have just gone gluten free to see if my anemia resolved.   I was pretty desperate.  However, my hubby would be the first to say that I get way more support from family, friends, and yes, medical.   That firm diagnosis can be invaluable.  

I am also glad I did the endoscopy.  My first endoscopy revealed damaged villi.  The second endoscopy reveal healthy villi some five years later.  Unfortunately, it also revealed chronic autoimmune gastritis and a gastric polyp that was not there five years ago.  Knowing where you stand (benchmark) at diagnosis can be a good thing.  I can now keep an eye out for gastric cancer.  

A challenge for just the endoscopy is now 2 weeks.  It might be worth considering.  

Take your time to make an informed decision and one you can live with for the rest of your life.  

I wish you well! 

 

[Elli-]

1 hour ago, cyclinglady said:

Well, not according to all the celiac centers around the world.  For a while, they were thinking that a genetic test, a very positive celiac panel and a good response to the celiac diet might be enough to diagnose celiac disease.  They definitely have been implementing this in children in Europe.  It can work.  But for some reason, ( I have not found an answer), they are now back to ordering an endoscopy for a firm diagnosis, even for kids.  Maybe they were missing cancer or other issues like SIBO that can accompany celiac disease.  But that is just layman’s speculation.  As member Gemini states, “I do not wear a white coat.”

Another example is that the University of Chicago used to promote just the TTG tests for screening.  It was supposed to be the best and it would also save money.  Now U of Chicago is listing all the celiac tests.  I guess they figured out that one test did not catch all celiacs (like me) and they left a bunch of sick celiacs undiagnosed.  

Is nothing in life easy?  

You are going to have to decide what is best for you.  

I went though with the endoscopy because I needed to know for sure.  My hubby had been gluten free for 12 years prior.  I knew exactly what a celiac disease diagnosis meant and I was NOT happy with my blood test result.    I was shocked.  I needed to see biopsy results.  I needed to have NO doubt.  But that is me.

Again, you need to determine that for yourself.  I do not know all your health issues, finances, insurance ....you get my drift.  

Had I not had insurance or had to wait 8 months for an endoscopy, I might have just gone gluten free to see if my anemia resolved.   I was pretty desperate.  However, my hubby would be the first to say that I get way more support from family, friends, and yes, medical.   That firm diagnosis can be invaluable.  

I am also glad I did the endoscopy.  My first endoscopy revealed damaged villi.  The second endoscopy reveal healthy villi some five years later.  Unfortunately, it also revealed chronic autoimmune gastritis and a gastric polyp that was not there five years ago.  Knowing where you stand (benchmark) at diagnosis can be a good thing.  I can now keep an eye out for gastric cancer.  

A challenge for just the endoscopy is now 2 weeks.  It might be worth considering.  

Take your time to make an informed decision and one you can live with for the rest of your life.  

I wish you well! 

 

Thanks for this - it’s very helpful!  Oh yes, I did the endoscopy with this dr and it came neg.  Then switch doctors and did an 8 day gluten challenge and did another endoscopy which was positive.  The reason for my question is...do I need to have a sit down with this doctor and explain that he’s been negligent?  I’ve been through enough GIs to know that this is a systemic problem with doctors not wanting to pursue a dx with celiac.  And I want to make it better for future ppl who might come through his office.  I also have half a mind to ask for my appt fees back for the appointments when he refused to write a gluten-free diet script.  This past year was full of pain that was so extreme I only half remember it - I di recall not being able to think straight and calling his officee demanding morphine - hahahahahaha!  I laugh now but pain makes you do crazy things.  So I want him to stop doing things like this if it is, in fact, negligent.  I don’t want to sue him or anything but he “ruled out” celiac AFTER he had the blood test in his hand AND after I told him I went gluten free because of severe GI issues.  

This is NYC.  If you can’t get world-class medical care here then...it just blows my mind.  

[cyclinglady]

I do not think you can change this doctor.  Confronting him would serve no purpose.    You can report him to the medical board.  You can give an honest review on Yelp, etc.  Be nice and polite so your comments come across as valid.  

I think my first GI caught my diagnosis because he attended a recent conference (never asked as I never went back due to insurance changes).   My new GI has celiac patients (I asked) and is young which probably means he received at least an hour of training about celiac disease while in medical school.  Better yet, he keeps on top of the lastest research. When I walked in for my first appointment, he had already reviewed my chart and ordered the necessary tests for good follow-up celiac care. 

Remember, you are your own advocate.