Not Celiac.....right?

[frankenstein]

Hi a few years ago I had the following results:

Deamidated Giladin Abs, Iga was a weak positive of 27.

Everything else on the test was normal -- Deamidated Giladin Abs, IgG, tTG IgA, ttG IgG, Endomysial Antibody IgA, Immunogloubin A Qn Serum.

We did a biopsy. Nothing seen for celiac. 98% sure i was not limiting gluten in the days/weeks before this biopsy.

 

2022, an endoscopy also shows no celiac issues. Again pretty sure I was not limiting gluten before this. We did this scope because my iron levels kept dipping to low normal (but lower than they should be based on what i eat) when not supplemented and supplementation stores were not holding.

2023 Celiac bloodwork all comes up normal but I had been limiting gluten under low fodmap. I was doing this because my gut started to become a wreck in Sept 2022.

 

Every MD says based on above, no Celiac. Strongly. That the weak positive was a false result. I agree with them. But. A dietician who is trying to be helpful is like it's gotta be celiac, false weak positives never happen, and that I probably wasn't eating enough gluten for either biopsy.

Dealing with dry eyes gone bad too but Sjogrens fully ruled out. Random fatty lymph node on back of neck not going away.

 

Highly, highly highly likely this is not Celiac. Right? Just the PCPs and GIs? Right? Thanks. 

[trents]

The weak positive for the Deamidated Giladin Abs, Iga prevents a conclusive rule out of celiac disease.

I would suggest you have some genetic testing done. If you don't have any of the genes that have been connected to celiac disease then you can comfortably rule it out.

It is also possible that you have NCGS (Non Celiac Gluten Sensitivity) for which there is no test available yet. Celiac disease and NCGS share many of the same symptoms and NCGS is 10x more common. Some gluten disorder experts feel NCGS can be a precursor to celiac disease. But at the end of the day the antidote is the same for both, namely, total elimination of gluten from the diet for a lifetime.

Edited September 28, 2023 by trents

[frankenstein]

14 hours ago, trents said:

The weak positive for the Deamidated Giladin Abs, Iga prevents a conclusive rule out of celiac disease.

Sure but that's what the 2 rounds of biopsies are for, right? Like the odds that two biopsies missed the right spot when gluten was being eaten. 

[trents]

Believe it or not, we do have people on this forum who have reported having positive antibody testing but negative biopsy. Caught very early perhaps? We also know that a small percentage of celiacs with dermatitis herpetiformis (for which there in no other cause but celiac disease) have no villi damage. With gluten disorders, things are turning out to be not as cut and dry as we used to think they were. 

So, I gather since you are on the FODMAP diet you have investigated MCAS/histamine intolerance. Have you been checked for the MTHFR gene mutation?

Have you ever gone whole hog into the gluten free diet to see if your symptoms abate?

[frankenstein]

31 minutes ago, trents said:

Believe it or not, we do have people on this forum who have reported having positive antibody testing but negative biopsy. Caught very early perhaps? We also know that a small percentage of celiacs with dermatitis herpetiformis (for which there in no other cause but celiac disease) have no villi damage. With gluten disorders, things are turning out to be not as cut and dry as we used to think they were. 

So, I gather since you are on the FODMAP diet you have investigated MCAS/histamine intolerance. Have you been checked for the MTHFR gene mutation?

Have you ever gone whole hog into the gluten free diet to see if your symptoms abate?

Yes but those are exceptions and I did have two biopsies four years apart. Don't have the dermatological condition. I don't believe MCAS is what the Internet makes it out to be (likewise with SIBO) but emphasize with those suffering. Histamine seems to often be self diagnosis which is not a good spot. When I do low FODMAP normally I go gluten free except for one bout where I was eating sourdough. I am currently trying gluten free with medium FODMAP and do not feel good from it. I am eating product that say gluten free even if not certified.

[trents]

All things considered, it doesn't sound like you have celiac disease.

But I am puzzled by your comments on MCAS and SIBO. 

I am also not clear on why you posted since you seem to have come to your own conclusions and have convinced yourself that you don't have celiac disease. And, not without reason, I might add.  I'm not sure what you wanted help with.

[frankenstein]

2 minutes ago, trents said:

All things considered, it doesn't sound like you have celiac disease.

But I am puzzled by your comments on MCAS and SIBO. 

I am also not clear on why you posted since you seem to have come to your own conclusions and have convinced yourself that you don't have celiac disease. And, not without reason, I might add.  I'm not sure what you wanted help with.

I just can't shake off the dietian's adamancy that I have celiac. My gut is absolute hell and I don't want to be wrong in thinking she is wrong. I would love it to be as such because it would be an answer with a roadmap.

[trents]

27 minutes ago, frankenstein said:

I just can't shake off the dietian's adamancy that I have celiac. My gut is absolute hell and I don't want to be wrong in thinking she is wrong. I would love it to be as such because it would be an answer with a roadmap.

Yes, I understand where you must be coming from. You're looking for more clarity.

[Scott Adams]

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. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

Your dietician was concerned because the positive test means that your body is having an immune response to gliadin (found in gluten):

Quote

The DGP-IgA test is considered to have high sensitivity and specificity. In general, the DGP-IgA test has been reported to have a sensitivity ranging from 75% to 95% and a specificity ranging from 90% to 100%. The DGP tests have been found to have a sensitivity of around 85-95% and a specificity of around 95-98%.

 

 

[frankenstein]

1 hour ago, Scott Adams said:

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. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

Your dietician was concerned because the positive test means that your body is having an immune response to gliadin (found in gluten):

 

Hi thank you for this. i did read the article. it does seem like that my testing had the proper follow up tests that one does when the have a weak positive for what i did. no?

[Scott Adams]

I could not tell from your post whether this test was done: IgA Levels/Deficiency Test (often called "Total IGA").

PS: Be careful about typing withing a quote...and you can reply without quoting as well, just click the box below. People may not see your reply if you put it within the quote area.

 

[frankenstein]

Hi thanks. It doesn't seem like that that was done in 2018. Maybe that's something that became more standard after that year? It was done in 2018. It just seems like It would have been spotted in two biopsies years apart and that most of the blood work data points to no. I think. Right? Like 90% chance of no?

[trents]

Total IGA is not a standard test ordered when doctors are checking for celiac disease. It should be but many physicians are operating under the dated assumption that IGA deficiency only happens with pediatric patients. It would be a test I would suggest anyone request if they suspect celiac disease and that one hasn't been run yet. At the bare minimum, total IGA and tTG-IGA should be ordered routinely when checking for celiac disease.

[frankenstein]

I appreciate it and I am sure there is value but I would think Quest and LabCorp would include it in their standard panel and be current with things. I'm sorry and I know I don't know much here, but I find language such as "operating under the dated assumption" as Internet talk where users exist under this notion that doctors and professional lab companies don't know anything. A lot of doctors suck, I get it. But for the majority of doctors to be "outdated" just very likely doesn't hold. Totally for advocating and I have had to do it a ton, but that language is a flag for me. Like people who say "Doctors don't know to stain for CD117!" for MCAS.

[trents]

You are entitled to your opinion in this matter but the actual experience of the celiac community, not the internet, supports what I am advocating. For many of us, it took over 10 years to get a correct diagnosis and by then, there was serious damage to other body systems such as bones and neurons as well as the development of other food intolerances and autoimmune disorders that may have been or likely would have been avoided with a more timely diagnosis.

In my own case, it took me 13 years to get a correct diagnosis of celiac disease back around the year 2000. Thirteen years before that I had my blood donation turned down because my liver enzymes were elevated. My PCP ran all kinds of hepatitis tests and other labs and could find nothing to cause it. Liver enzymes remained elevated over time and other labs started to get out of whack like dropping iron levels, albumin and total protein. My PCP couldn't find any answers and one day said, "I don't know. Maybe that's just the way you are." That was not a satisfactory answer. I made an appointment with a GI doc and he tested me right away for celiac disease, both blood tests and biopsy. They were positive. Within three months my liver enzymes had normalized. Now, all my labs, both CBC and CMP are normal. My point is, the PCP did not have celiac disease on his radar because he had been taught in med school that only 1 in 5000 have it and he did not know that it can cause elevated liver enzymes. Now we know that about 1% of the population have celiac disease and about 20% of those will have elevated liver enzymes. There has been improvement in awareness about gluten-related disorders since then but there is still a woeful lack of knowledge in the medical community at large. Many older doctors are operating on outdated information. And let me assure you, my experience is very common in the celiac community. By the time I was diagnosed I had developed osteopenia and intolerances to some other non-gluten containing foods. And don't forget, the medical community is more driven by metrics and cost containment than it used to be. Many doctors can't think outside the box anymore. 

I understand what you are saying about distrusting "doctor Internet" but even worse is the carte blanche trusting of the medical community.

[frankenstein]

"I understand what you are saying about distrusting "doctor Internet" but even worse is the carte blanche trusting of the medical community." I agree that both are not good, but imo both are equally not good. I've learned the hard way. I'm sorry it took so long for you to get there. I do think it's a bit different though because yours was found once they tested for the thing it was. For me it's a bit frustrating when i've had the testing in many ways, and a dietian says "well maybe it was wrong." If they are right, of course, that is fantastic. But when it heavily points no, and you're enduring a lot of stress trying to get answers, it is more stressful for someone to say something like this. So, like I get that a different test could help too. But to blanket it as "that test isnt done because doctors are behind" just is like it starts to feel like a carnival game. The SIBO forums are all like this. People dont have Sibo and the responses are all over the place with "thats because they didnt look at this this and that." Maybe i'm wrongly taking that experience into this discussion. It just seems like unlike SIBO, Celiac is more sound. I'd love to have Celiac at this point. I don't want to disregard the dietian if they are right. It's just like...at some point one has to go with where things heavily point. Right?

[trents]

I don't disagree with you. But in a way you contradict yourself by allowing the input from the dietician to cause you angst if it is a outlier. But maybe it bothers you because you also realize that truth isn't necessarily established by majority opinion. Perhaps the dietician's own experience or her experience with clients from her different perspective is something valuable. At any rate, without a complete battery of celiac antibody tests you are operating on incomplete information. On the other hand, we must make many decisions in life based on incomplete information and it is usually wise in these cases to look at what is most likely based on the info you do have - unless that is, acquiring the additional, more complete information is a reasonable option.

[knitty kitty]

@frankenstein,

I agree with your dietician.  Iron deficiency anemia can affect your antibody production.  Was your iron levels still low at the time of the second test?  

You said you were limiting the amount of gluten due to the low Fodmap diet, so not eating enough gluten prior to the tests can give false negatives. 

Has your Vitamin D level been checked?  Vitamin D works like a hormone to regulate your immune system.  

Dry eyes are symptomatic of malabsorption of omega three fats.  

Have you been tested for any other vitamin deficiencies?  Ask for an Erythrocyte Transketolase test to see if you are deficient in Thiamine.  Thiamine deficiency can cause Gastrointestinal Beriberi.  The symptoms of Gastrointestinal Beriberi can mimic Celiac Disease symptoms.

Get a genetic test done.  You can't argue with your genes. 

[frankenstein]

Thanks. I see what you mean. But politely, again, I have had a complete battery. I had extensive antibodies that are used by 99% of people to get diagnosed or diagnose with celiac. I have had two biopsies.

"But in a way you contradict yourself by allowing the input from the dietician to cause you angst if it is a outlier. But maybe it bothers you because you also realize that truth isn't necessarily established by majority opinion." - It is not angst necessarily. This has been a 15-month journey with many setbacks from things that should have done good. I am exhausted. I am dealing with other complex things at the same time. Nothing has certainty and if you follow the idea that there's a slight chance that something is wrong, still, despite extensive workup, then it can drive you mad. It's worse with SIBO. The tests have less accuracy. So it's a world of people being like (hyperbole) "you've had 11 breath tests but it could still be sibo." and it's like enough. i am not saying you are that but the slim, slim possibilities have to be both seen as slim and most of the time addressed as not the cause. There's a possibility the forecast for sun and 80 degrees F is wrong and it starts snowing. but i wouldnt bring a parka.  And of course I don't want to go down the wrong path, be it celiac investigation or not, only to see the other path was right.

[frankenstein]

2 minutes ago, knitty kitty said:

@frankenstein,

I agree with your dietician.  Iron deficiency anemia can affect your antibody production.  Was your iron levels still low at the time of the second test?  

You said you were limiting the amount of gluten due to the low Fodmap diet, so not eating enough gluten prior to the tests can give false negatives. 

Has your Vitamin D level been checked?  Vitamin D works like a hormone to regulate your immune system.  

Dry eyes are symptomatic of malabsorption of omega three fats.  

Have you been tested for any other vitamin deficiencies?  Ask for an Erythrocyte Transketolase test to see if you are deficient in Thiamine.  Thiamine deficiency can cause Gastrointestinal Beriberi.  The symptoms of Gastrointestinal Beriberi can mimic Celiac Disease symptoms.

Get a genetic test done.  You can't argue with your genes. 

I'm sorry, but....Beriberi is an extremely rare condition. If you are going to mention it, you are not being helpful if you are not stating as such. In addition I do not have anorexia, nausea, vomiting.  My question here is asking about Celiac and with all due respect please do not go diagnose rare conditions, that is a problematic issue of internet discussions. 

D levels are supplemented due to a grey weather town where everyone takes D supps. WIth that they are fine and i dont know how to know without them.

Please read again. For the 2018 biopsy and the 2022 biopsy, and the 2018 bloodwork, there was no low fodmap. The low fodmap would have affected the 2022 bloodwork, which i think doesnt have much value due that.

Iron was fine at the time of 2018. In 2022 it was within normal range but on the lower side.

[knitty kitty]

Gastrointestinal Beriberi does occur.  It's not rare.  Doctors have been under diagnosing it. 

High Calorie Malnutrition does occur.  A person can eat plenty of calories, but not sufficient vitamins needed to process them into energy.  

You asked for advice from people familiar with Celiac Disease.  We are familiar with Celiac Disease and testing.

Anemia and Diabetes can produce false negatives.  

Do the genetic tests to see if you have any Celiac Disease alleles.  

[frankenstein]

"Gastrointestinal Beriberi does occur.  It's not rare.  Doctors have been under diagnosing it. "

My symptoms do not match it and any condition that has the only place where it shows up on the internet is NIH studies is rare.

[trents]

Well, there is nothing much more to say so I'm dropping out of this thread. Sorry that we couldn't help you but we tried.

[frankenstein]

1 minute ago, trents said:

Well, there is nothing much more to say so I'm dropping out of this thread. Sorry that we couldn't help you but we tried.

I have had a battery of tests, no? Just trying to resolve that.

[trents]

Okay, I'll mention one more thing. No, IMO you have not had a complete battery of tests. IIR, you have not even had a total IGA test done. If total IGA is low, it can drive down scores in individual IGA tests. Here is a summary of all antibody tests that can be done for detecting celiac disease and would comprise a complete celiac panel: 

knitty kitty knows her stuff. She is medical professional. I would not dismiss her suggestions so lightly. Don't be afraid to think outside the box.