Celiac tests and IGA Deficiency

[Lorien]

Hi. My name is Lori.  Last month  I had almost 2 weeks of diarrhea, bloating, fatigue, and dehydration. It has been another week and I am still getting to my version of 100%.   I  already have Fibromyalgia, osteoarthritis, and polyneuropathy(unknown cause). I am used to feeling terrible but this really ran me down. Urgent Care ran some stool tests that didn't show anything. I was already due for a bunch of labs so I asked my Dr if she had anything she could add. I suggested Celiac testing since my 30-year-old son was recently diagnosed. She agreed and ran a panel. 

My numbers are not crazy high, but I had also barely been eating for 2 weeks and lost 13 lbs. I was mostly eating miso soup, popsicles, electrolyte drinks, and occasional toast and crackers.  My Dr says I have Celiac and I have an appointment with a GI in December. We have ONE GI practice in my area.   I probably won't even get in for a scope until well after the new year.  I guess I am looking for feedback and information. I did read that a positive TTG could indicate other things like lupus and Hashimotos but I have been tested for everything over the last 7 years, including MRIs for MS. No one ever bothered to check me for Celiac though. I am feeling a bit frustrated by that. I have a long history of anemia, B and D deficiencies, lactose intolerance, and general poor health that has gotten worse over the years. Currently, my anemia is under control but I am B12 and D deficient. Could it be something else or are the low positives likely because I hadn't been eating much?  Should I try to find a GI that can get me in sooner? I would have to drive 3 to 5 hours away, but am considering it. Or is that a fairly standard wait time for Gastro?

 My results were as follows:

Tests that were normal or negative:

DEAMIDATED GLIADIN ABS, IGA   was normal range

DEAMIDATED GLIADIN ABS, IGG    17 units  out of  0 - 19 units, so normal

ENDOMYSIAL ANTIBODY IGA  Negative

 

Positives:

T-TRANSGLUTAMINASE (TTG) IGA :       Weak Positive 6           (Negative 0 - 3  Weak Positive 4 - 10  Positive >10)
T-TRANSGLUTAMINASE (TTG) IGG   POSITIVE: 12 U/mL         (Negative 0 - 5 Weak Positive 6 - 9  Positive >9)

IMMUNOGLOBULIN A, QN, SERUM      82 mg/dL      87 - 352 mg/dLL    3 out of 7 of my kids have Selective IGA Deficiency and one has IgM Deficiency. I was tested a few years ago and was 1 point into the normal range. Now I am below. She ran the panel she did because of our IGA history.  My son previously had a false negative because the Dr he saw 6 years ago didn't run the full panel with his IGA deficiency in mind. 

 

Thank you for any insight. 

 

 

[trents]

2 minutes ago, Lorien said:

Hi. My name is Lori.  Last month  I had almost 2 weeks of diarrhea, bloating, fatigue, and dehydration. It has been another week and I am still getting to my version of 100%.   I  already have Fibromyalgia, osteoarthritis, and polyneuropathy(unknown cause). I am used to feeling terrible but this really ran me down. Urgent Care ran some stool tests that didn't show anything. I was already due for a bunch of labs so I asked my Dr if she had anything she could add. I suggested Celiac testing since my 30-year-old son was recently diagnosed. She agreed and ran a panel. 

My numbers are not crazy high, but I had also barely been eating for 2 weeks and lost 13 lbs. I was mostly eating miso soup, popsicles, electrolyte drinks, and occasional toast and crackers.  My Dr says I have Celiac and I have an appointment with a GI in December. We have ONE GI practice in my area.   I probably won't even get in for a scope until well after the new year.  I guess I am looking for feedback and information. I did read that a positive TTG could indicate other things like lupus and Hashimotos but I have been tested for everything over the last 7 years, including MRIs for MS. No one ever bothered to check me for Celiac though. I am feeling a bit frustrated by that. I have a long history of anemia, B and D deficiencies, lactose intolerance, and general poor health that has gotten worse over the years. Currently, my anemia is under control but I am B12 and D deficient. Could it be something else or are the low positives likely because I hadn't been eating much?  Should I try to find a GI that can get me in sooner? I would have to drive 3 to 5 hours away, but am considering it. Or is that a fairly standard wait time for Gastro?

 My results were as follows:

Tests that were normal or negative:

DEAMIDATED GLIADIN ABS, IGA   was normal range

DEAMIDATED GLIADIN ABS, IGG    17 units  out of  0 - 19 units, so normal

ENDOMYSIAL ANTIBODY IGA  Negative

 

Positives:

T-TRANSGLUTAMINASE (TTG) IGA :       Weak Positive 6           (Negative 0 - 3  Weak Positive 4 - 10  Positive >10)
T-TRANSGLUTAMINASE (TTG) IGG   POSITIVE: 12 U/mL         (Negative 0 - 5 Weak Positive 6 - 9  Positive >9)

IMMUNOGLOBULIN A, QN, SERUM      82 mg/dL      87 - 352 mg/dLL    3 out of 7 of my kids have Selective IGA Deficiency and one has IgM Deficiency. I was tested a few years ago and was 1 point into the normal range. Now I am below. She ran the panel she did because of our IGA history.  My son previously had a false negative because the Dr he saw 6 years ago didn't run the full panel with his IGA deficiency in mind. 

 

Thank you for any insight. 

 

 

Welcome to the forum, Lori! It does look like you have celiac disease and given the subnormal total serum IGA score and your low gluten diet, I am sure the scores would have been higher. Unfortunately, if you begin a gluten free diet now you will need to go back to eating significant amounts of gluten daily for at least two weeks in advance of the endoscopy/biopsy. However, it sounds like your doc has already declared you to have celiac disease and if so it should be so stated in you medical history and records. IMO, in view of the fact that the endoscopy/biopsy is likely to be a ways off, I think you should begin the gluten-free diet in earnest now and see if your symptoms improve. If they do, you probably have your answer and there may be no need to seek a biopsy for confirmation. And if you want to proceed with a biopsy, you have time to fit in the gluten challenge.

[Scott Adams]

I agree with @trents.

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.

 

 

[Lorien]

Thank you for your feedback. I am miserable and have decided to cut gluten and dairy out until they can give me an actual date for biopsy, which will be into the new year sometime. I am concerned about damage done considering that I am almost 50 and just diagnosed so I am going to get it done. But for now I am going to try to find relief in a gluten free diet and hope that helps my gut. 

[trents]

3 hours ago, Lorien said:

Thank you for your feedback. I am miserable and have decided to cut gluten and dairy out until they can give me an actual date for biopsy, which will be into the new year sometime. I am concerned about damage done considering that I am almost 50 and just diagnosed so I am going to get it done. But for now I am going to try to find relief in a gluten free diet and hope that helps my gut. 

Sounds reasonable given that the biopsy is so far away in the future.

[RMJ]

Your son having celiac disease also makes it more likely that you have it. I hope you feel better gluten free!

[trents]

6 hours ago, Lorien said:

Thank you for your feedback. I am miserable and have decided to cut gluten and dairy out until they can give me an actual date for biopsy, which will be into the new year sometime. I am concerned about damage done considering that I am almost 50 and just diagnosed so I am going to get it done. But for now I am going to try to find relief in a gluten free diet and hope that helps my gut. 

But you also need to reckon with the fact that once you have been on a gluten free diet for a significant time, you will likely lose whatever tolerance you had when consuming gluten regularly. Thus, your symptoms may be more intense when you go back on gluten prior to the biopsy. Before my diagnosis and starting the gluten free diet I could eat gluten and not have much if any symptoms. I was largely a "silent" celiac, even though the disease was slowly wasting my small bowel villi. After being gluten free for years I now react violently to a significant gluten exposure, like the time I got my wife's wheat biscuits confused with the gluten free biscuits she made me. It caused several hours of emisis followed by several hours of diarrhea.

[DanMc]

One thing I've learned from reading this forum over the last few months is that B12 and vitamin D deficiency are a recurring motif among coeliacs. That doesn't mean for a moment that you're *definitely* coeliac, but as soon as I saw those two deficiencies, my ears immediately pricked up. Good luck getting this sorted out - I've been hardcore gluten free for about six weeks, and I'm *finally* seeing some significant improvements in my mental acuity and physical well-being.