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Hi Everyone,

So I've been gluten free for 8 months and was diagnosed back in November. I had my TTG done at my local health fair and had an endoscopy to follow, which showed that I had stage 3b damage. I didn't have many symptoms.

My TTG was >100. It was super high. My GI didn't suggest that we do a full celiac panel, and at the time I didn't realize that there were more tests to run. I didn't get the DGP or anything else. Just the TTG. In January, after 2 months, my TTG was sitting at a 12. So I guess that shows that being gluten free lowered it significantly.

I guess I'm concerned that they didn't do the other tests. Are those tests necessary? Could anything else have caused that kind of intestinal damage, aside from Celiac? My pathology report says that it's consistent with Celiac but that it should be taken into consideration with all of my other tests, etc.

It's too late now to do a panel, I know. But I'm an anxious person by nature and this has me wondering if my diagnosis was correct, or if I could have another AI disease that caused the TTG to be high like that. I know that some other AI disorders are exacerbated by gluten, so I am concerned that stopping gluten could have just helped a potential other disorder (and caused a decrease in my TTG). But my GI told me that other AI disorders wouldn't cause a TTG to be that high - he said that's significant and that Celiac would be what would cause an off the charts TTG like that. I trust him, but I wish I had asked more questions. Now I feel like I don't have a definitive diagnosis. And I didn't really have symptoms, so it's hard to know if I feel a whole lot different being gluten free. I also know I'm still early in my healing. Maybe I'm just being nuts. Again.

I guess the way to know is to have a follow-up endoscopy done in November to see if I'm healing? Am I worrying needlessly? Have others just had the TTG? 

:(

I should point out, I had the TTG/IGA, not just a TTG. 

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I think you are fine.  Your GI followed the normal algorithm and your case fit that algorithm perfectly.  

http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf

Consider yourself lucky.  Your GI sounds competent!  

It is up to you and your doctor to decide if you want a follow-up endoscopy.  I think long-time member,  Peter waited five years and was completely healed.  Based on my research, one year is too soon for a follow-up because most folks take more than a year to heal.  What if you still have some villi damage?  What do you gain from that?  Are you just a slow healer or will your doctor think you are not sticking to the diet?    For me, I would feel discouraged!  But it should be done if you have not had any symptom improvement at all.  Something else could be going on (e.g. SIBO, IBD, etc).  Antibody testing should be sufficient along with a reduction in symptoms as a gauge for healing for many celiacs (not all, because some are seronegative and some are asymptomatic).  

 

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9 minutes ago, cyclinglady said:

I think you are fine.  Your GI followed the normal algorithm and your case fit that algorithm perfectly.  

http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf

Consider yourself lucky.  Your GI sounds competent!  

It is up to you and your doctor to decide if you want a follow-up endoscopy.  I think long-time member,  Peter waited five years and was completely healed.  Based on my research, one year is too soon for a follow-up because most folks take more than a year to heal.  What if you still have some villi damage?  What do you gain from that?  Are you just a slow healer or will your doctor think you are not sticking to the diet?    For me, I would feel discouraged!  But it should be done if you have not had any symptom improvement at all.  Something else could be going on (e.g. SIBO, IBD, etc).  Antibody testing should be sufficient along with a reduction in symptoms as a gauge for healing for many celiacs (not all, because some are seronegative and some are asymptomatic).  

 

The alogrithm still lists the other tests as part of the total blood workup though, right? Maybe I'm not reading it correctly. 

Its hard to say if I have symptom improvement because I wasn't very symptomatic before. And I do still have some weird days. 

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55 minutes ago, cyclinglady said:

I think you are fine.  Your GI followed the normal algorithm and your case fit that algorithm perfectly.  

http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf

Consider yourself lucky.  Your GI sounds competent!  

It is up to you and your doctor to decide if you want a follow-up endoscopy.  I think long-time member,  Peter waited five years and was completely healed.  Based on my research, one year is too soon for a follow-up because most folks take more than a year to heal.  What if you still have some villi damage?  What do you gain from that?  Are you just a slow healer or will your doctor think you are not sticking to the diet?    For me, I would feel discouraged!  But it should be done if you have not had any symptom improvement at all.  Something else could be going on (e.g. SIBO, IBD, etc).  Antibody testing should be sufficient along with a reduction in symptoms as a gauge for healing for many celiacs (not all, because some are seronegative and some are asymptomatic).  

 

Ok, now I'm seeing what you're seeing. They didn't check my IGA alone before I had the TTG. So I don't know what that level was by itself. I assume if you're deficient in IGA that your TTG would be lower, yes? Since it says TTG/IGA I assume it's TTG AND IGA. Right? I'm no genius though. And I certainly don't know anything about science or lab work. I'm just a communication major. :) 

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The algorithm starts with the TTG.  If very positive (like yours was), it tells the GI that the next step is an endoscopy/biopsies.  If the biopsies are positive, the diagnosis is celiac disease.  If the TTG is negative, the GI can assume that 1) either celiac disease is NOT likely or 2) order additional tests if he still suspects celiac disease.  

On this forum, many of us push for the complete panel.  Why?  Because the TTG dies not catch all celiacs.  Your case is a perfect text book case of celiac disease.  You were fortunate in the sense that you got a diagnosis and should have no doubt.  Even now, you reported that your TTG has since dropped significantly while on a gluten diet.  That is fantastic!  It also helps solidify without a doubt that you have celiac disease.

Now, the hardest part is recovery.  It takes so long.  Sometimes neurological issues never resolve as the damage is too great, but that is rare.  Again, we are lucky to know the trigger for a flare-up.   Who knows what really sets off lupus or MS?  

Every celiac will have off days -- even weeks.    It happens.  We all have different issues aside from celiac disease.  Those are going to impact our recovery too.  

I was really only anemic when I was diagnosed.  I could not believe the one positive on I had on the celiac panel was accurate.  I did not want to have celiac disease.  Heck, hubby had been gluten free for 12 years and as his wife and cook, it was hard!!!!  I knew all too well the difficulties of remaining gluten free.  My biopsies revealed a Marsh Stage IIIB.  I had celiac disease.  Here is the clincher.  After being glutened twice through cross contamination (I wish it was because I threw caution to the wind and consumed some fresh sourdough bread slathered in butter), I developed more issues and I now get all the classic GI symptoms.   How can that be?  Researchers do not know, but it happens.

If you seriously doubt your diagnosis. Talk to your doctor. 

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3 minutes ago, Fbmb said:

Ok, now I'm seeing what you're seeing. They didn't check my IGA alone before I had the TTG. So I don't know what that level was by itself. I assume if you're deficient in IGA that your TTG would be lower, yes? Since it says TTG/IGA I assume it's TTG AND IGA. Right? I'm no genius though. And I certainly don't know anything about science or lab work. I'm just a communication major. :) 

Well, an IGA deficiency test should be ordered at the same time as a TTG or before.  If you were negative on the TTG IgA, then your GI could have run it after to insure the test result was accurate.  But a GI did not run the test.  It was at a fair, right?  So, they gave you the one best test for the money.  So lucky you were screened at all!  Most of us took years to get a diagnosis.  My bones will NEVER recover.  NEVER.  

Got  to run....kid needs a pick up!  

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3 minutes ago, cyclinglady said:

The algorithm starts with the TTG.  If very positive (like yours was), it tells the GI that the next step is an endoscopy/biopsies.  If the biopsies are positive, the diagnosis is celiac disease.  If the TTG is negative, the GI can assume that 1) either celiac disease is NOT likely or 2) order additional tests if he still suspects celiac disease.  

On this forum, many of us push for the complete panel.  Why?  Because the TTG dies not catch all celiacs.  Your case is a perfect text book case of celiac disease.  You were fortunate in the sense that you got a diagnosis and should have no doubt.  Even now, you reported that your TTG has since dropped significantly while on a gluten diet.  That is fantastic!  It also helps solidify without a doubt that you have celiac disease.

Now, the hardest part is recovery.  It takes so long.  Sometimes neurological issues never resolve as the damage is too great, but that is rare.  Again, we are lucky to know the trigger for a flare-up.   Who knows what really sets off lupus or MS?  

Every celiac will have off days -- even weeks.    It happens.  We all have different issues aside from celiac disease.  Those are going to impact our recovery too.  

I was really only anemic when I was diagnosed.  I could not believe the one positive on I had on the celiac panel was accurate.  I did not want to have celiac disease.  Heck, hubby had been gluten free for 12 years and as his wife and cook, it was hard!!!!  I knew all too well the difficulties of remaining gluten free.  My biopsies revealed a Marsh Stage IIIB.  I had celiac disease.  Here is the clincher.  After being glutened twice through cross contamination (I wish it was because I threw caution to the wind and consumed some fresh sourdough bread slathered in butter), I developed more issues and I now get all the classic GI symptoms.   How can that be?  Researchers do not know, but it happens.

If you seriously doubt your diagnosis. Talk to your doctor. 

Oh I don't doubt it. I don't know why else I would have stage 3b damage if I didn't have celiac. Can other things cause villi blunting and hyperplasia? My doctor went to Princeton and got his MD from John's Hopkins, and then completed his residency at Beth Israel of Harvard. He's been a GI in Denver for years and actually diagnosed my aunt in the 90s. When I showed him my results he said, "Yep, you've got Celiac. Sorry about that." and I asked if another AI issue could cause my TTG to be high (mostly because I was relieved it was Celiac and was terrified I could have something else) and he said, "No, not with results that high. Sometimes you'll see elevated TTG levels with T1 diabetes or some other AI issues, but not like this." and then when my biopsy came back he confirmed it was Celiac. I asked him about Crohns once and he looked at me and said, "Crohns and Celiac aren't directly related and no, I don't believe you have Crohns." and he gave me that "Stop asking me about things you read on Google" look. He doesn't tolerate my anxiety well. He's kind but I know I annoy him. I suppose he knows more than I do. 

But I have read so many posts on here where people suggest that some GI's are just totally incompetent when it comes to Celiac. So that gets me second guessing things. But I have accepted I have Celiac. I know my endo didn't lie. And to be honest, I suffered with constipation for years before I was diagnosed. I always thought I needed to drink more water or eat more fiber. But I dealt with that for a long time off and on, and since I stopped eating gluten I haven't been constipated one single time in 8 months. I had panic attacks too and got really dizzy feeling when I'd get anxious. Now I still am anxious and a nervous wreck, but I don't seem to have the physiological responses to that like I used to. I'm content with having celiac. It's a bummer but if you're going to have anything I guess you're lucky to have this. As long as I don't eat gluten I'll be ok. As a control freak by nature it works for me. 

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