Endoscopy Results Positive, Negative Blood Screening Results

[earthymom]

Hi-

I have what seems like an unusual sequence of test results and I could use some advice on moving forward. I developed iron deficiency anemia earlier this year. I also had low vitamin D levels and have had low B12 in the past (not low currently possibly due to supplementation). I am 49 and went through menopause early, 6 years ago. I have also recently been diagnosed with osteopenia. To diagnose my iron deficiency anemia, I recently had a colonoscopy and endoscopy with biopsies. My biopsy showed "early signs of Celiac in the small bowel". My GI Dr sent me for the TTG IgA and total IGA test. Both tests were in the normal range: TTG IgA was <1 and my Total IgA 253. They also repeated my blood count and my hemoglobin was in the normal range and my ferritin increased, indicating my iron supplementation was working. They said to follow up in 2 months to check my iron. End of Celiac diagnosis trail. This seems odd to me, that there may be damage to my small bowel causing an adsorption issue or indication of Celiac with no further testing being recommended. Should I push for more testing? Has anyone else had this sequence of abnormal results? TIA for your help! I'm actually a lab technologist and am familiar with general lab testing, but I'm not very familiar with Celiac testing and diagnosis.

[trents]

Has you already begun a gluten free diet between the time of the endoscopy/biopsy and the serological antibody testing?

The immune system of some celacs responds atypically such that the antibody tests are negative while the biopsy is positive. You might seek out a more complete or "full" celiac panel which includes the "Other" tests discussed in this article: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Edited December 21, 2021 by trents

[earthymom]

1 minute ago, trents said:

Has you already begun a gluten free diet between the time of the endoscopy/biopsy and the serological antibody testing?

No, but I don't think I eat a lot of gluten. I don't eat bread and pasta hardly ever. I do realize that gluten is in many other things and that I do consume it probably regularly, but I don't think it is in really high quantities.

 

[trents]

I had added more to my post after you responded. Please read again.

Pretesting recommendations from Mayo are the consumption of the equivalent amount of gluten found in two slices of wheat bread daily at least two weeks before an endoscopy/biopsy and 6-8 weeks before the serum antibody test. The endoscopy/biopsy is considered the gold standard of celiac diagnosis.

[earthymom]

6 minutes ago, trents said:

I had added more to my post after you responded. Please read again.

Pretesting recommendations from Mayo are the consumption of the equivalent amount of gluten found in two slices of wheat bread daily at least two weeks before an endoscopy/biopsy and 6-8 weeks before the serum antibody test. The endoscopy/biopsy is considered the gold standard of celiac diagnosis.

Thank you. I appreciate your input. This is really helpful.

[Michele2977]

On 12/21/2021 at 10:51 AM, earthymom said:

Hi-

I have what seems like an unusual sequence of test results and I could use some advice on moving forward. I developed iron deficiency anemia earlier this year. I also had low vitamin D levels and have had low B12 in the past (not low currently possibly due to supplementation). I am 49 and went through menopause early, 6 years ago. I have also recently been diagnosed with osteopenia. To diagnose my iron deficiency anemia, I recently had a colonoscopy and endoscopy with biopsies. My biopsy showed "early signs of Celiac in the small bowel". My GI Dr sent me for the TTG IgA and total IGA test. Both tests were in the normal range: TTG IgA was <1 and my Total IgA 253. They also repeated my blood count and my hemoglobin was in the normal range and my ferritin increased, indicating my iron supplementation was working. They said to follow up in 2 months to check my iron. End of Celiac diagnosis trail. This seems odd to me, that there may be damage to my small bowel causing an adsorption issue or indication of Celiac with no further testing being recommended. Should I push for more testing? Has anyone else had this sequence of abnormal results? TIA for your help! I'm actually a lab technologist and am familiar with general lab testing, but I'm not very familiar with Celiac testing and diagnosis.

Have you asked IgA deficiency? I am celiac AND IgA deficient so my celiac can’t be monitored using IgA numbers. My doctor has to go by endoscopy AND IgG numbers only. You may want to ask about further testing for IgA deficiency (I went to an immunologist fir this after my gastroenterologist suspected it because of my initial bloodwork and endoscopy) and for your gastroenterologist to run your IgG numbers

[trents]

Michele2977, OP states in her original post that total IGA was not low.

Edited December 29, 2021 by trents

[Michele2977]

48 minutes ago, trents said:

Michele2977, OP states in her original post that total IGA was not low.

She said her TTG IgA was <1. I know the total was normal, but that <1 is worth further investigating. Maybe she has already had the other bloodwork done and didn’t mention it. Information is powerful and necessary in keeping ourselves healthy 

[Pat Jackson]

Almost 2 years ago, my GI dr ordered an endoscopy because I told her how miserable I was and that I knew something was wrong.  The biopsy showed celiac disease, which surprised me, but shouldn't have because I knew for years that wheat was a problem.  I had thought it was just an allergy.  Anyway, she followed up with the blood work, to "confirm" the result.  It was negative.  I, too, didn't eat a lot of gluten because I knew it bothered me, but apparently I was getting enough to cause the small intestine damage.   I don't know why the blood work was negative, but my results after going gluten free speak for themselves.  Long story, but I went gluten free immediately.  It was a difficult first year, as the learning curve was quite steep for me, and it turned out that I'm very sensitive to any trace amounts of gluten now.  The second year started to get much better, and now I think I've got a good handle on it and a lot of healing has taken place.  I had a lot of inflammation in other parts of my body, which has greatly improved, and everything feels a lot better.  The gastritis that I've had almost all of my adult life is almost completely gone.  Even dental checkups have improved (the part where they measure the gums pulling away).  I limped for about 4 years from very painful hip bursitis, and that's totally gone now. 

I'm sure I've had celiac for a very long time.  I've told different doctors about my GI discomfort for years, but nobody investigated it until I specifically told the dr that I knew something was wrong.  If you don't take steps, your osteopenia can certainly turn to osteoporosis, and you surely don't want that.  I was diagnosed with osteoporosis before menopause, and none of the doctors I saw thought to check for celiac.  One thing that helped me a lot on my journey was finding a dietitian who specialized in celiac disease.

Good luck.  I hope you get some answers and are feeling better soon.

[trents]

9 hours ago, Michele2977 said:

She said her TTG IgA was <1. I know the total was normal, but that <1 is worth further investigating. Maybe she has already had the other bloodwork done and didn’t mention it. Information is powerful and necessary in keeping ourselves healthy 

A full celiac panel would include not only IGA tests but an IGG test, the latter being helpful when total IGA is low: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ But, OP states total IGA is not low.

 

Edited December 30, 2021 by trents

[Michele2977]

10 minutes ago, trents said:

So, are you referring to other IGA deficiencies besides tTG-IGA when you advise to test for IGA deficiency? If so - if other IGA components were low then total IGA should be low - which it is not. When diagnosing celiac disease, positive results mean higher than normal values for the various IGA antibody tests, not deficiencies. Abnormally low total IGA can skew any of the various antibody tests downward and can mask celiac disease.

A full celiac panel would include not only IGA tests but a IGG test, the latter is helpful when total IGA is low: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ But, OP states total IGA is not low.

 

I’m well educated on celiac testing. I have a good medical team to seek advice and information from who monitors my progress and health. I am simply making a suggestion based on the information the OP shared. If something doesn’t make sense to someone and makes them post on a forum like this, it warrants further expert investigation, which none of us are qualified to give. There is nothing wrong with additional medical tests that may clear up confusion. If I were in the OPs shoes I would be investigating the outlier thoroughly, but that’s just me…I like to educate myself in all important areas of my life

[trents]

Michele2977, I just could not follow your logic in what further testing you were recommending in your advice to OP.

[Michele2977]

3 minutes ago, trents said:

Michele2977, I just could not follow your logic in what further testing you were recommending in your advice to OP.

Yeah I figured that out. I’ll make it simple so this dialogue can conclude…

I shared my experience and simply suggested asking questions in that area as an option. The more important take away for the OP, not you, should be always ask questions and get additional opinions. Look into outliers in the data and make sure you understand your health and how to improve it. We are our best advocates and need to make sure we are heard. If someone is seeking advice on line, they should be redirected back to their medical team or to expand it. 
I wish the OP lots of luck on their journey and a healthy 2022.