All Tests Negative Except High IgA Gliadin

[Joshmitchell]

So, I recently was told by my GI that I had Celiac Disease. I had an upper endoscopy in October that showed my villi were not blunted. This was after I went back on gluten for a month or so. They ran a blood panel then, and the only thing that was abnormal was my Gliadin IgA. It was 39 m/l. I took another blood panel last week since being back off gluten since October. My test result showed 29m/l. I guess I’ve been getting cross contamination or something. But is a high Gliadin IgA all that is needed to determine Celiacs? My IGA was normal. My IGG was normal. My transglutenaminase IGG and IgA was normal, as well as my Endomysial IgA. Is there any way this can be just a gluten allergy and not Celiac Disease? Thanks!

Also, my mother has Celiac Disease. 

[trents]

Josh, what led up to your endocopy/biopsy and the follow-up blood work? Were you having classic celiac disease symptoms? Can you give us some more history here?

There are some foods (e.g., the protein "casein" in milk) and some meds and some non gluten related bowel conditions (e.g. Crohn's Disease) that can mimic celiac disease but in all  these the villi would be blunted. 

Allergies are IGe, not IGA mediated. Celic antibody blood panels focus on various IGA antibodies. The most specific IGA antibody test for celiac disease is the TTG test but it is also the least sensitive. That's why we recommend a full IGA panel being run.

Sounds like you could have non celiac gluten sensitivity. But beware, that may be a precursor to celiac disease. What is your age range and how long have you been having symptoms? Whether celiac disease or sensitivity the remedy is the same, totally avoiding gluten. Even trace amounts such as through cross contamination.

The other issue here is it sounds like at times you were off gluten before testing. That will give negative test results either through blood work or biopsy. The recommendation is to be eating some gluten daily for 6-8 weeks before the blood test is done and at least two weeks before the endoscopy/biospy is done in order to render valid results.

[Joshmitchell]

1 hour ago, trents said:

Josh, what led up to your endocopy/biopsy and the follow-up blood work? Were you having classic celiac disease symptoms? Can you give us some more history here?

There are some foods (e.g., the protein "casein" in milk) and some meds and some non gluten related bowel conditions (e.g. Crohn's Disease) that can mimic celiac disease but in all  these the villi would be blunted. 

Allergies are IGe, not IGA mediated. Celic antibody blood panels focus on various IGA antibodies. The most specific IGA antibody test for celiac disease is the TTG test but it is also the least sensitive. That's why we recommend a full IGA panel being run.

Sounds like you could have non celiac gluten sensitivity. But beware, that may be a precursor to celiac disease. What is your age range and how long have you been having symptoms? Whether celiac disease or sensitivity the remedy is the same, totally avoiding gluten. Even trace amounts such as through cross contamination.

The other issue here is it sounds like at times you were off gluten before testing. That will give negative test results either through blood work or biopsy. The recommendation is to be eating some gluten daily for 6-8 weeks before the blood test is done and at least two weeks before the endoscopy/biospy is done in order to render valid results.

Thanks for the response. I actually went to the doctor in June because I had had several severe bouts of heartburn. The doctor decided to run the blood tests because my mother was diagnosed with Celiacs. I was then off gluten until a month before my endoscopy in October based on the bloodwork from June. Then I had gluten everyday for a month before my endoscopy. 
I really don’t feel that differently since not eating things with gluten. I guess maybe that’s because I’m still getting gluten through cross contamination, but one would think there’d be some difference regardless. I never really felt that badly being on gluten. I never had any severe stomach issues. I guess I would have some occasionally, but I was also eating a lot of fast food. 

[Scott Adams]

It would be a bit odd for a GI doctor to diagnose you with celiac disease without some test results that backed this up, even though the fact that you mother has this makes you ~44% likely to also have it.

[Joshmitchell]

13 minutes ago, Scott Adams said:

It would be a bit odd for a GI doctor to diagnose you with celiac disease without some test results that backed this up, even though the fact that you mother has this makes you ~44% likely to also have it.

It’s the same Gliadin IgA test that keeps coming back high. All of the other tests I mentioned are in the normal range. 

[Scott Adams]

This article below will be helpful:

Quote

IgA anti-gliadin antibodies are less sensitive but are more specific. In clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for celiac disease. Therefore, a positive result is a strong indication that the patient has the disease but a negative result does not necessarily mean that they don not have it. False positive results are rather uncommon but false negative results can occur.

 

[Joshmitchell]

56 minutes ago, Scott Adams said:

This article below will be helpful:

 

This is very helpful. Thank you. This was from the article you posted:

IgA class anti-endomysial antibodies (AEA) are very specific, occurring only in celiac disease and DH. These antibodies are found in approximately 80% of patients with DH and in essentially 100% of patients with active celiac disease. IgA endomysial antibodies are more sensitive and specific than gliadin antibodies for diagnosis of celiac disease.

My endomysial IgA antibody test came back negative. Was this because I’ve been off gluten for several months? But then again, how can the Gliadin IgA antibody be positive and this one be negative? Or is there a difference between the articles reference of “anti-endomysial antibodies” and the endomysial antibody test I took? 

[CMCM]

I've learned that even the old "gold standard" for diagnosis  (i.e. endoscopy and biopsy) aren't as "gold" as formerly thought because villi damage can be in patches, and therefore can be easily missed during the procedure.  The typical celiac blood panel can also be vague and a negative isn't necessarily a negative.  Also, if you have the predisposing gene for celiac and if you are reacting to gluten, there is a possibility that the intestinal damage isn't yet bad enough yet to create the leaky gut that would cause all the antibodies to show up in a blood test.  Gluten is making you sick, but it hasn't done its damage yet.  Sometimes that takes years to get very bad.  Diagnosis is very tricky, I've learned, and nothing seems totally certain.   

Have you done a genetic test yet to find out if you have a celiac gene?  That wouldn't diagnose celiac disease in and of itself, but it would at least show it's a possibility given the right circumstances.  And a gene test could also show if you have a gene or genes that are linked with gluten sensitivity.  Or you could have both, as I do.  Your mother has celiac disease, so it's quite likely that she gave you a celiac gene as well.   Perhaps you also have a gluten sensitivity linked gene, and that is the one governing your current situation.  

You didn't mention the symptoms you have that led to a celiac diagnosis by your doctor.  It seems odd that he would jump into a blood test and then endoscopy/biopsy so quickly. What was the train of events leading to this?  

 What I've been reading lately is if you have the suspicious symptoms, first get a blood test, then if it's positive or inconclusive or even negative, get the gene test.  These are good starting points.

If you only have gluten sensitivity and not celiac disease, you could still get an almost identical set of symptoms as celiac disease, except without celiac the gluten doesn't cause the celiac disease autoimmune condition in the gut. But gluten sensitivity can lead to a whole boatload of other autoimmune conditions in other parts of the body.

 

[JenniK]

On 3/22/2021 at 6:50 PM, Scott Adams said:

It would be a bit odd for a GI doctor to diagnose you with celiac disease without some test results that backed this up, even though the fact that you mother has this makes you ~44% likely to also have it.

My GI did. If you see my recent posts, you’ll see that I was surprised as well. My GI diagnosed me (with great certainty) based on history of symptoms- mostly diarrhea, mouth sores, arthritis pain and DH rash (which completely disappeared for two years while gluten-free and then flared during a short challenge.) I DID have a history of inflammation markers being high on blood tests, but my celiac panel was done at the totally wrong time and was in the neg. He did not feel the need to retest or to do the biopsy in order to say definitively that i am celiac. Definitely surprised me, but maybe doctors are changing their minds on celiac. 
 

In regards to damaged gut, my GI also told me that i may have ‘completely healed’ my gut during my two years gluten-free. He thought that was definitely possible, and that new damage in gut might not show up yet. (Especially in regards to the fact that pre-gluten-free, i always had diarrhea, but during the challenge, i had all the other symptoms, but the D had not gotten bad yet.) Then again, he contradicted himself and said that if i did want the endoscopy, i would only need to eat gluten for two weeks, which kind of goes against the above theory of healing. I think this particular GI was a great combination of being informed but also open minded about celiac.

[trents]

8 minutes ago, JenniK said:

Then again, he contradicted himself and said that if i did want the endoscopy, i would only need to eat gluten for two weeks, which kind of goes against the above theory of healing. I think this particular GI was a great combination of being informed but also open minded about celiac.

Apparently, all it takes is two weeks of being on a significant amount of gluten daily to do enough damage to the villi to show up in a biopsy. This is  the standard recommendation for those already having started eating gluten-free, i.e. two weeks back on daily gluten consumption. It actually takes longer (6-8 weeks) of reintroducing gluten in order to make the blood  tests valid. Sounds wrong intuitively but that's how it really is.

[CMCM]

7 hours ago, trents said:

Apparently, all it takes is two weeks of being on a significant amount of gluten daily to do enough damage to the villi to show up in a biopsy. This is  the standard recommendation for those already having started eating gluten-free, i.e. two weeks back on daily gluten consumption. It actually takes longer (6-8 weeks) of reintroducing gluten in order to make the blood  tests valid. Sounds wrong intuitively but that's how it really is.

Very interesting what you say above.  I knew about the longer exposure being necessary for blood tests, but didn't know about the biopsy being a shorter time potentially.  However, you still have the issue of villi damage being spotty rather than widespread in many cases, and I've read that even with a biopsy sampling 5 different spots it could still be missed.

[Scott Adams]

On 4/9/2021 at 6:37 AM, trents said:

Apparently, all it takes is two weeks of being on a significant amount of gluten daily to do enough damage to the villi to show up in a biopsy. This is  the standard recommendation for those already having started eating gluten-free, i.e. two weeks back on daily gluten consumption. It actually takes longer (6-8 weeks) of reintroducing gluten in order to make the blood  tests valid. Sounds wrong intuitively but that's how it really is.

This is why Dr. Kenneth Fine started Enterolab and uses stool antibody testing—according to him, antibodies show up in the gut long before, and long after someone whose gluten sensitive eats gluten.

[Joshmitchell]

1 hour ago, Scott Adams said:

This is why Dr. Kenneth Fine started Enterolab and uses stool antibody testing—according to him, antibodies show up in the gut long before, and long after someone whose gluten sensitive eats gluten.

I’m interested in doing one of the gene tests through enterolab to see if I have the celiacs gene. I’d also like to check for some other food allergies like dairy. Is there a particular test or tests you would recommend? 

[CMCM]

3 hours ago, Scott Adams said:

This is why Dr. Kenneth Fine started Enterolab and uses stool antibody testing—according to him, antibodies show up in the gut long before, and long after someone whose gluten sensitive eats gluten.

Yes....and I was interested in Enterolab's method because Dr. Fine said they could detect antibodies up to a YEAR after you last ate gluten.  However, the existence of such antibodies isn't sufficient to specifically diagnose celiac disease, but it is enough to show gluten sensitivity is a factor in your system and it COULD be celiac disease. 

All the focus for decades has been on celiac disease and not on the broader spectrum of gluten sensitivity.  So your doctor was undoubtedly focused on celiac disease (but it's good he/she had the knowledge!), which may or may not be the case with you, depending on whether or not you have the predisposing celiac gene and possibly whether or not you have villous atrophy.  It could also be that you have gluten sensitivity and not celiac.  Both are bad, but it is only specifically celiac disease that attacks the villi of the intestine.  Gluten sensitivity can attack dozens of OTHER parts of the body, but not the intestine in the way that celiac does. 

By the way, on my Enterolab test they said I had antibodies but also seemed to think the overall test indicated I "don't yet have villous atrophy".  Obviously, antibody reaction would be the precursor to eventual intestinal wall damage...and Enterolab also stated that if I continued to eat gluten, that could happen.  Still, it's rather vague at that point.  But why wait until you are very sick and have damage?

I think at this point in terms of diagnosis,  it's very important to understand the entire gluten sensitivity spectrum...and know where it overlaps celiac disease in symptoms (many if not most symptoms are shared), and it's important to know that celiac disease is but ONE select manifestation of gluten sensitivity damage and it is governed by possessing either the DQ2 or DQ8 genes, the "celiac" genes. 

Diagnosing gluten sensitivity alone is a less studied and less developed area since it has been minimized and almost ignored for so long.  However, there are apparently quite a lot of genes that are called "gluten sensitivity pattern" genes.  When I got my Enterolab test results back, they sent a rather long list of these genes so at the very least, some of them have been identified to some degree.  Gluten sensitivity and its effects in the absence of a celiac gene is going to be a new area of study and is badly needed.

Edited April 11, 2021 by CMCM

[trents]

Good words, CAROLE! I think you did some excellent summary and gave sound advice.