I feel like I'm a conundrum....

[zebra1975]

Hi! I am hoping for a little direction...help in critical thinking...etc.  6 years ago I was diagnosed with celiac, and 10 months (and 5 biopsies) later, I was told I didn't have it.   My GI issues have waxed and waned since and celiac is being considered again.  I have gone gluten free to the celiac level multiple times, reintroduction never causes an increase in symptoms.
I have an IgA deficiency, which never helps. 
With biopsies, my marsh scores have been marsh 2. I have had e-coli, salmonella, citrobacter and cyclospora infections--not sure if they contribute or not. 
My deamidated gliadin score is always negative regardless of whether I'm on or off gluten or not.  Ttg IgG  always been 4-11.  I have the hla dq2 gene.  I have a large family, no one in my family has ever had celiac. 
Because of marsh being only a 2 and not a 3 and because the gliadin is always negative and the ttg igg at most is only weakly positive and even have had a lower score on gluten than off and because I have no family hx of celiac (and I have a large family) my first GI felt I don't have celiac.  Now I'm seeing a different GI and with all the same info, they are saying I do have it since I have IgA deficiency and a marsh score. I feel like they are just saying celiac to be done with me. 

My primary (who of course is not a GI) leans towards me not having it.  

Is there anything you can point me/us to that might help us clarify?  I don't want to needlessly have a dx of celiac....
Would it be reasonable to ask if they would consider eosinophilic duodenitis? Or anything else?  (One course of xifaxan helped--for 30 days.  A year later, no real effect, so--prob not SIBO). 
I know a forum can't  diagnose--just looking for any insight that might help us  figure this out....

Thank you! 

"Zebra"

"Because sometimes when you hear hoofbeats, you SHOULD look out for zebras"....

[trents]

Welcome to the forum, Zebra! Here are some things besides celiac disease that can cause villous atrophy:

https://www.verywellhealth.com/villous-atrophy-562583

[zebra1975]

1 minute ago, trents said:

Welcome to the forum, Zebra! Here are some things besides celiac disease that can cause villous atrophy:

https://www.verywellhealth.com/villous-atrophy-562583

Thanks Trent...would you tend be on side celiac or side it prob isn't celiac given my test results? 

[trents]

Because reintroduction of gluten after trialing gluten free eating seems not to aggravate symptoms, I doubt it's celiac. But have you truly been gluten free or just eating lower gluten? There's quite a learning curve involved you know in attaining a truly gluten free state and studies show that most who claim to be eating gluten free actually aren't because they are only accounting for major sources of gluten and not paying attention to the hidden sources or to cross contamination. 

And what does this mean? "I have gone gluten free to the celiac level multiple times"? 

[zebra1975]

Yes--I have been completely gluten free multiple times--when I say "to the celiac level" I mean -- throw out the toaster, cutting boards, don't eat out, bring my own food to my friends houses, obsessively read labels etc..... the longest period was for 10 months -- but even then eating bread and gluten foods didn't bring on symptoms or change my bloodwork or biopsy until at least a couple months later.  Currently, from out of nowhere, I've had 2 wks of feeling great, and have changed nothing in my life that cld acct for feeling great....

[Wheatwacked]

Your IGA deficiency will cause false negetives in your blood tests.

It takes a lot of damage to get a Marsh 3.  You are lucky.

11 hours ago, zebra1975 said:

6 years ago I was diagnosed with celiac, and 10 months (and 5 biopsies) later, I was told I didn't have it.

It really doesn't go away.  

11 hours ago, zebra1975 said:

Now I'm seeing a different GI and with all the same info, they are saying I do have it since I have IgA deficiency and a marsh score.  I have the hla dq2 gene

They are correct.

11 hours ago, zebra1975 said:

 I don't want to needlessly have a dx of celiac

Immunoglobulin A (IgA) deficiency is 10 to 15 times more common in patients with celiac disease (celiac disease) than in healthy subjects.  This itself could be a symptom of Celiac Disease.

This article may answer your question.  Are You Confused About Your Celiac Disease Lab Results? 

Also consider the non classic symptoms that you may be experiencing and blaming on anything else. Allergies, joint/muscle pain can be caused by gluten.  I don't get protein buildup on my contacts since gluten free. I was an alcoholic 30 years and smoke.  Every thing was blamed on that.  But it all went away, sleep apnea, mouthbreather and including the alcoholism itself, when I started GFD at age 63.

What is your blood level 25(OH)D for vitamin D?  If it is high enough, it could be protecting you by keeping your immune system under control.

If you are following a gluten free diet and have symptoms look for vitamin deficiencies as the cause.

 

 

Edited September 26, 2024 by Wheatwacked

[Scott Adams]

"marsh being only a 2 and not a 3" PLUS "ttg igg at most is only weakly positive" = celiac disease. Many celiacs are asymptomatic, so you cannot go by symptoms as a diagnostic criteria in all cases. Your TTg-IgA tests were negative due to your naturally low IgA, so the negative results don't mean anything other than IgA tests won't work with you.

[zebra1975]

2 minutes ago, Scott Adams said:

"marsh being only a 2 and not a 3" PLUS "ttg igg at most is only weakly positive" = celiac disease. Many celiacs are asymptomatic, so you cannot go by symptoms as a diagnostic criteria in all cases. You TTg-IgA tests were negative due to your naturally low IgA, so they don't mean anything.

I do know that any test using iga is pointless; they don't do them--they only do the igg based tests. 

Deamidated gliandin abs igg has never been positive or even close. Marsh has other explanations per tge first GI that saw me and decided that I did not have celiac after all....so with only a marsh 2 and not a marsh 3 and the ttg igg at its highest ever only being labeled "weakly positive" which can be considered normal for some people--he stated that number should be significantly higher to really say celiac -- so it's all confusing. 

I dont have additional symptoms that someone else was asking about. 

[trents]

It is also possible that because you have been alternating between being gluten free and not gluten free, the damage to your small bowel villi was less than it might have been had you not been gluten free for extended periods of time. But again, there are other possible causes for villi damage besides celiac disease.

I would also inject a corrective here to what others have said about IGA deficiency. IGA deficiency does not guarantee that IGA celiac antibody scores will be negative, it simply increases the likelihood that they will be negative, particularly in those cases where the scores wouldn't have been high anyway or were borderline. In other words, it lowers the scores and pushes them toward the negative end.

[Scott Adams]

Weak positive is still a positive test. 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. Using biopsy results only it does not require Marsh 3 damage to make a diagnosis--a diagnosis can be made with Marsh 2 level damage, especially if you have even a weak positive blood test for celiac disease.

Per this article:
 

Quote

The sensitivity of the tTG-IgG blood test is generally high, ranging from 85% to 98%. This means that the test can accurately detect celiac disease in a significant percentage of people who have the condition.

The specificity of the tTG-IgG blood test is also high, typically around 90% to 98%. This indicates that the test can effectively rule out celiac disease in individuals who do not have the condition.

 

 

[Beverage]

I don't get typical intestinal symptoms when glutened. I feel fine for weeks trying something new, then bam I feel like I've been hit by a truck, joint and bone aches, can't think straight, no energy, etc. I tried gluten free Oreos and it took eating a few a day over at least a month until the bag was almost gone, then wham.

[DALTE04]

The blood serum antibodies can be tricky. My niece has celiac disease and her IGG antibodies have always been normal, but her IgA antibodies have been high.  
I would suggest getting a GI map stool test and make sure it tests for anti-gliadin antibodies. I have asymptomatic celiac disease, which was discovered using blood serum antibodies. My son has always had very low blood serum antibodies, but even with him being gluten-free for weeks, his anti-gliadin antibodies in his stool test were double the upper end of normal. My stool test showed low anti-gliding antibodies after being gluten-free for over a year. The point is that we have more to learn about diagnosing celiac disease than we currently know. Trust your body. You may also look into Cyrex Labs; they have a much more extensive lab panel for gluten intolerance. Good luck.

[trents]

1 hour ago, DALTE04 said:

The blood serum antibodies can be tricky. My niece has celiac disease and her IGG antibodies have always been normal, but her IgA antibodies have been high.  
I would suggest getting a GI map stool test and make sure it tests for anti-gliadin antibodies. I have asymptomatic celiac disease, which was discovered using blood serum antibodies. My son has always had very low blood serum antibodies, but even with him being gluten-free for weeks, his anti-gliadin antibodies in his stool test were double the upper end of normal. My stool test showed low anti-gliding antibodies after being gluten-free for over a year. The point is that we have more to learn about diagnosing celiac disease than we currently know. Trust your body. You may also look into Cyrex Labs; they have a much more extensive lab panel for gluten intolerance. Good luck.

To have high IGA antibodies but negative IGG antibodies is not unusual, nor is the reverse of that unusual. It is seldom the case that all antibodies are positive. Concerning stool testing for celiac disease, I do not believe there is general agreement within the medical community that such is a reliable diagnostic tool.