Celiac disease or not? Differing opinions among GI MD!

[Blue-eyed bandit]

Hello:

I was d/x with Celiac disease awhile ago. I had a negative biopsy, but the MD d/x me anyways based on symptoms, and labs. Fast forward and the MD retired and I moved onto a new GI MD in the same practice. She stated that she didn't believe I had celiac due to negative biopsy. We redid labs and an upper endoscopy. Again endoscopy negative. She said my labs were positive though and believes since it is impossible to biopsy the entire small intestine that I have celiac, I was also d/x with Barrett's Esophagus. Then she moved- again I was transferred to another GI MD in the practice. This MD disagreed that I have celiac. I got back on wheat and he retested- endoscopy only, not bloodwork. Endoscopy negative. He believes my labs could be positive from other things. He says it is ok to eat wheat. I feel like I am mostly asymptomatic when eating wheat- but cannot be totally sure because honestly no matter what I do, I feel like my stomach hurts. It doesn't hurt more on or off wheat. I do feel like for symptoms, eating gluten causes some constipation but that could be because when I am gluten free I eat healthier.  I am unsure what to do, and who to trust. I have read that the biopsy is the gold standard but I am concerned about my bloodwork. Here is my bloodwork- it is confusing to me because on gluten my endomysial antibody iga is in normal range, but off it, it was high. And on gluten my deaminated gliadin abs iga was a 30 which is considered a weak positive. The newest MD thinks that I could have higher numbers of these labs for other reasons. Can you all please explain what all this means- because per the MD- I can eat gluten. Prior to all this I have been gluten free for almost or about 10 years- due to my d/x by the first MD. I just don't know who to trust- and am worried that if I continue to eat gluten, I could be causing future health problems, but also don't want to exclude gluten if it isn't necessary! Thanks so much in advance for the help :).

Lab work as follows: 

8/2020-  on gluten

Deaminated gliadin abs iga: 30(H)

Deaminated gliadin abs igg: 4

TTG iga: 2

TTG igg: 2

endomysial antibody iga: 321

2/2020: Off gluten

Deaminated gliadin abs iga: 19

Deaminated gliadin abs igg: 4

TTG iga: 2

TTG igg: 2

endomysial antibody iga: 370(H)

DQ2: +

DQ8: +

[RMJ]

Were the blood tests run at the same lab?  Do they have the same reference ranges?  

That is an unusual endomysial antibody test result because of the way it is stated.  Usually the result given is the highest dilution of serum that gave a positive result and is in the format 1:#, so 1:5, 1:10, 1:20, 1:40, 1:80, 1:160, 1:320, etc. Because of that I don’t know what this result means.  What is the standard range for this test?

Your deamidated gliadin IgA antibody DID go up with gluten. That could indicate celiac disease.

How long were you eating wheat prior to your latest endoscopy?  At least two weeks is recommended, although some people do not develop damage that quickly.

How frustrating to have the bloodwork and endoscopy not match up and not know what is really going on!

[Blue-eyed bandit]

I’ll have to try to screenshot my labs or look them up again to give you the results. Sorry about the confusion. I’ll get this updated to make it more clear soon. 
 

Eating wheat was over 6 months because all this happened during covid and I was a covid RN at the time so they kept putting off my biopsy and my labs which is why there is a 6 month difference in between. 

[Blue-eyed bandit]

35 minutes ago, RMJ said:

Were the blood tests run at the same lab?  Do they have the same reference ranges?  

That is an unusual endomysial antibody test result because of the way it is stated.  Usually the result given is the highest dilution of serum that gave a positive result and is in the format 1:#, so 1:5, 1:10, 1:20, 1:40, 1:80, 1:160, 1:320, etc. Because of that I don’t know what this result means.  What is the standard range for this test?

Your deamidated gliadin IgA antibody DID go up with gluten. That could indicate celiac disease.

How long were you eating wheat prior to your latest endoscopy?  At least two weeks is recommended, although some people do not develop damage that quickly.

How frustrating to have the bloodwork and endoscopy not match up and not know what is really going on!

It won’t let me upload a picture of the labs. So here is the reference range for endomysial antibody iga immunoglobulin a qn serum. Negative 87-352. 

[Blue-eyed bandit]

49 minutes ago, RMJ said:

1 hour ago, Blue-eyed bandit said:

Hello:

I was d/x with Celiac disease awhile ago. I had a negative biopsy, but the MD d/x me anyways based on symptoms, and labs. Fast forward and the MD retired and I moved onto a new GI MD in the same practice. She stated that she didn't believe I had celiac due to negative biopsy. We redid labs and an upper endoscopy. Again endoscopy negative. She said my labs were positive though and believes since it is impossible to biopsy the entire small intestine that I have celiac, I was also d/x with Barrett's Esophagus. Then she moved- again I was transferred to another GI MD in the practice. This MD disagreed that I have celiac. I got back on wheat and he retested- endoscopy only, not bloodwork. Endoscopy negative. He believes my labs could be positive from other things. He says it is ok to eat wheat. I feel like I am mostly asymptomatic when eating wheat- but cannot be totally sure because honestly no matter what I do, I feel like my stomach hurts. It doesn't hurt more on or off wheat. I do feel like for symptoms, eating gluten causes some constipation but that could be because when I am gluten free I eat healthier.  I am unsure what to do, and who to trust. I have read that the biopsy is the gold standard but I am concerned about my bloodwork. Here is my bloodwork- it is confusing to me because on gluten my endomysial antibody iga is in normal range, but off it, it was high. And on gluten my deaminated gliadin abs iga was a 30 which is considered a weak positive. The newest MD thinks that I could have higher numbers of these labs for other reasons. Can you all please explain what all this means- because per the MD- I can eat gluten. Prior to all this I have been gluten free for almost or about 10 years- due to my d/x by the first MD. I just don't know who to trust- and am worried that if I continue to eat gluten, I could be causing future health problems, but also don't want to exclude gluten if it isn't necessary! Thanks so much in advance for the help :).

Lab work as follows: 

8/2020-  on gluten

Deaminated gliadin abs iga: 30(H)

Deaminated gliadin abs igg: 4

TTG iga: 2

TTG igg: 2

endomysial antibody iga: 321

2/2020: Off gluten

Deaminated gliadin abs iga: 19

Deaminated gliadin abs igg: 4

TTG iga: 2

TTG igg: 2

endomysial antibody iga: 370(H)

DQ2: +

DQ8: +

I have added reference ranges of labs to help clarify. 

8/2020-  on gluten

Deaminated gliadin abs IgA: 30(H)  limits: 0-19

Deaminated gliadin abs IgG: 4  limits: 0-19 

TTG IgA: 2   limits: 0-3

TTG IgG: 2   limits: 0-5

endomysial antibody IgA: 321  negative: 87-352

2/2020: Off gluten

Deaminated gliadin abs IgA: 19  limits: 0-19

Deaminated gliadin abs IgG: 4   limits: 0-19

TTG IgA: 2   limits: 0-3

TTG IgG: 2   limits: 0-3

endomysial antibody IgA: 370(H)  negative: 87-352

DQ2: +

DQ8: +

 

[RMJ]

35 minutes ago, Blue-eyed bandit said:

 

The range that you are labeling as “endomysial antibody IgA” looks like the normal range for TOTAL IgA, which includes IgA towards all antigens. Does it have units?  Perhaps mg/dL? Total IgA is often run to be sure the patient is not deficient, if one is deficient in total IgA then the celiac specific IgA tests may not be useful.

Perhaps it is:

Endomysial antibody: negative

Total IgA: 370 mg/dL

This would make a lot more sense.

[Blue-eyed bandit]

13 minutes ago, RMJ said:

The range that you are labeling as “endomysial antibody IgA” looks like the normal range for TOTAL IgA, which includes IgA towards all antigens. Does it have units?  Perhaps mg/dL? Total IgA is often run to be sure the patient is not deficient, if one is deficient in total IgA then the celiac specific IgA tests may not be useful.

Perhaps it is:

Endomysial antibody: negative

Total IgA: 370 mg/dL

This would make a lot more sense.

I’m not sure. I’ll try to format my file to attach the labs. 

[Blue-eyed bandit]

[Blue-eyed bandit]

17 minutes ago, RMJ said:

The range that you are labeling as “endomysial antibody IgA” looks like the normal range for TOTAL IgA, which includes IgA towards all antigens. Does it have units?  Perhaps mg/dL? Total IgA is often run to be sure the patient is not deficient, if one is deficient in total IgA then the celiac specific IgA tests may not be useful.

Perhaps it is:

Endomysial antibody: negative

Total IgA: 370 mg/dL

This would make a lot more sense.

Here are the labs. Hope that helps & thanks so much for helping me! 

[RMJ]

Yes, it is what I thought. Each line has to be read all the way across for those two tests.  It certainly is a confusing layout on the page! The Endomysial Antibody IgA is a separate test from Immunoglobulin A, Qn, Serum (Qn probably stands for quantitative).

The Endomysial Antibody IgA test was negative both times.  It actually looks at the same antigen as the t-Transglutaminase IgA, just in a different way, so not surprising. 

The Immunoglobulin A, Qn, Serum is in the normal range once and a little above once.  This doesn’t say anything about celiac disease.  As I mentioned, it is a control to make sure you have enough IgA to have the celiac-specific IgA tests valid.

So when you ate wheat, the deamidated gliadin antibody IgA went up. Some people with celiac disease only have this antibody test positive.  

[Blue-eyed bandit]

Ok I’m understanding now! Good grief it was misleading! So the only thing that is indicative of celiac disease would be the first test, deaminated gliadin abs IgA, that increased from 19 to 30 while on gluten? And of course my genetic markers. Are these labs enough to d/x celiac?! All my biopsies were negative. The last one was in July. I’ve been eating gluten since March. Blood work not repeated since 2020. MD says no need- but that frustrates me! I’m just so skeptical & cautious because this new doctor is saying no need to be off gluten but the other two were saying to definitely be (or stay) gluten free. And both d/x celiac even with the clean biopsy. It’s just frustrating to have mixed opinions on something not only so serious for my health but my overall lifestyle too! 

[RMJ]

I understand lab tests but don’t know what to say about whether you have celiac disease or not.  Biopsies can miss it.  

It is possible in most states in the US to order some of your own lab tests.  Here is one place through which they can be ordered.  You may want to order your own deamidated gliadin IgA test, to be performed by LabCorp (since they did your other tests) and see where your antibody levels are now. At least it would give you a little more information.

DGP IgA tests at WalkInLab

[Blue-eyed bandit]

29 minutes ago, RMJ said:

I understand lab tests but don’t know what to say about whether you have celiac disease or not.  Biopsies can miss it.  

It is possible in most states in the US to order some of your own lab tests.  Here is one place through which they can be ordered.  You may want to order your own deamidated gliadin IgA test, to be performed by LabCorp (since they did your other tests) and see where your antibody levels are now. At least it would give you a little more information.

DGP IgA tests at WalkInLab

Biopsies can miss it. That’s why the first 2 gi doctors asked me to stay off gluten. The second one said something like it’s impossible to test the entirety of the small intestine. I don’t know what else to do besides just waiting it out. I’ll back in the states in July & once I’m back in the states I’ll follow up with a different GI - due to the move. I’ll get their opinion. I guess I just wanted to feel confident in my decision to either eat gluten or not. 😩

[Wheatwacked]

On 12/2/2022 at 1:02 PM, Blue-eyed bandit said:

I have read that the biopsy is the gold standard

If the biopsy is positive for Celiac Disease, you definately have it. But if it is not positive it does not mean that you don't. You symptoms could also be Non Celiac Gluten Sensitivity, 10% are diagnosed NCGS while only 1% are diagnosed Celiac Disease. The difference appears to be the autoimmune aspect of Celiac Disease. Much of your discomfort even on gluten free diet could be attributed to vitamin deficiencies caused by choices and misinformation.

Raising vitamin D plasma to around 70 ng/ml has been shown to moderate the autoimmune aspect. Officially doctors are taught to consider anything above 29 ng/ml as sufficient but that is only based on what we need to avoid rickets in children and osteomyelitis in adults. The research on mood and other aspects of vitamin are dismissed out of hand.  Prior to the industrial revolution we spent much time in the sun, now we don't.

Our study supports a causal relationship between vitamin D deficiency and mortality. Additional research needs to identify strategies that meet the National Academy of Medicine's guideline of greater than 50 nmol/L and that reduce the premature risk for death associated with low vitamin D levels.

The new emerging role of vitamin D and its involvement in immune modulation has led it to be considered as a possible key factor involved in celiac disease (celiac disease) onset. celiac disease is a chronic immune-mediated enteropathy of the small intestine that is triggered by dietary gluten protein exposure in individuals who are genetically predisposed. However, along with gluten, other environmental factors are also involved in celiac disease onset.

Edited December 4, 2022 by Wheatwacked

[knitty kitty]

@Blue-eyed bandit,

Having the two Celiac genes plus the high DGP antibodies would be enough for me to decide to remain gluten free whether or not intestinal damage was found, as a preventive measure.  

DGP antibodies are developed first in young people.  The tTg antibodies come later.  

@Posterboy and I have found some scientific research papers that point to deficiencies in certain vitamins like thiamine and niacin which precipitate intestinal damage.  Eating a nutrient dense gluten free diet and supplementing with vitamins and minerals can keep you in good health.  

Best wishes

[Blue-eyed bandit]

2 hours ago, knitty kitty said:

@Blue-eyed bandit,

Having the two Celiac genes plus the high DGP antibodies would be enough for me to decide to remain gluten free whether or not intestinal damage was found, as a preventive measure.  

DGP antibodies are developed first in young people.  The tTg antibodies come later.  

@Posterboy and I have found some scientific research papers that point to deficiencies in certain vitamins like thiamine and niacin which precipitate intestinal damage.  Eating a nutrient dense gluten free diet and supplementing with vitamins and minerals can keep you in good health.  

Best wishes

Thanks so much. Yes I’ve decided to eat gluten free again and my stomach pain has improved so much as well as my bowel movements. I’m making sure to eat a mostly Whole Foods plant based diet and supplementing vitamin d3, along with a multivitamin. Thanks for the reply. 

[RMJ]

1 hour ago, Blue-eyed bandit said:

Thanks so much. Yes I’ve decided to eat gluten free again and my stomach pain has improved so much as well as my bowel movements. I’m making sure to eat a mostly Whole Foods plant based diet and supplementing vitamin d3, along with a multivitamin. Thanks for the reply. 

I’m so glad you’re feeling better!