Question re: IgG and IgA results

[Mary Jo Edmonstone]

Hello:
I was diagnosed with celiac in May 2019.   Have been on a strict gluten-free diet ever since.  Recent retests of IgG showed negative but IgA is still showing positive.   IgA has declined since starting gluten-free diet but still >20.   Is this a normal occurrence.   First test of IgG was 81.  Just wondering if it's a concern that after a  year, the result is still positive.

Thank you.

[Scott Adams]

Can you list the full name of the test that is elevated? Normally antibodies go away after being so long of a gluten-free diet. Is your diet 100% gluten-free? If you eat out it probably isn’t.

[Mary Jo Edmonstone]

It's the Tissue Transglutaminase Ab IgA.   I am very disciplined with my food.   I don't eat out; I primarily buy organic and even organic meats; dressings, sauces, etc are all gluten free.  I even checked to see if my thyroid medication is gluten-free...apparently it is, so I am at a loss.  

The level has significantly declined over the past year, but it is still out of range.

[Corinne D.]

Hi Mary Jo,

It is great that your antibodies are decreasing. However, a still positive result after one year gluten free could indicate either that gluten is still sneaking into your diet, or that you have some other autoimmune issue brewing. I believe these antibodies can also be elevated in type I diabetes and inflammatory bowel diseases. However, they would not be so high as in celiac disease.

You didn't mention how you feel after one year into the diet. Do you have any lingering symptoms? Also, have you had a follow-up endoscopy? How are your villi, compared to this time last year?

Is your home gluten free? If you live with others who consume gluten, you might get cross-contamination from crumbs, shared utensils, worktops...

Another thought: make sure any cosmetics you use are gluten free, especially things you could accidentally ingest, like lipstick.

You could try to go on an even stricter gluten-free diet, to make sure you eliminate all possible sources of cross-contamination. A variant of this is the Fasano diet, after the famous celiac specialist. This diet has been quite successful in cases of refractory celiac.

You can do this by eating only whole foods and avoiding all processed foods, including those certified gluten free, like bread, cookies, ready-made meals, chips etc. and also canned and frozen foods and lunch meats etc. It is also recommended to avoid most gluten-free grains and flours while trying this diet, just to make sure there is no cross-contamination.

Basically, the foods allowed are fresh meat and fish, fresh vegetables and fruit, eggs, unseasoned nuts and seeds in the shell, rice, dried legumes, butter, plain yogurt, milk, aged cheeses (if you tolerate dairy) and things like oils, unflavoured vinegar, honey and salt. You can make your own sauces and dressings, that's no big deal if you already cook. But you would have to prepare all your meals from scratch.

I hope you figure this out soon and get those numbers down.

[Mary Jo Edmonstone]

Thank you for the reply.   I had (what I thought) totally de-glutened my home, bought new utensils, etc.   I only use gluten-free creams, lip balms, sunscreen, etc.  I really thought I was doing everything right which is why it's very discouraging that one of the test level is still positive.  I've been feeling ok, however I do still have recurring heartburn/gerd symptoms which cause some upper abdominal pains which makes me wonder if something else is inflamed as well....doesn't explain the higher test results.which started the whole diagnosis in the first place.   It was the gerd symptoms which led to all the tests that uncovered celiac.  I will look up the diet you suggest and now will have to cycle back to my doctor.

[Scott Adams]

I would begin by re-examining your diet, and focus on foods you are eating regularly. Perhaps there is an issue with something. Do you eat oats or other grains? We recently ran an article which indicates that in India, many grains are contaminated:

 

[Mary Jo Edmonstone]

Thanks for this and for your input.   Much appreciated.

[JB3030CC]

2 hours ago, Mary Jo Edmonstone said:

Thank you for the reply.   I had (what I thought) totally de-glutened my home, bought new utensils, etc.   I only use gluten-free creams, lip balms, sunscreen, etc.  I really thought I was doing everything right which is why it's very discouraging that one of the test level is still positive.  I've been feeling ok, however I do still have recurring heartburn/gerd symptoms which cause some upper abdominal pains which makes me wonder if something else is inflamed as well....doesn't explain the higher test results.which started the whole diagnosis in the first place.   It was the gerd symptoms which led to all the tests that uncovered celiac.  I will look up the diet you suggest and now will have to cycle back to my doctor.

The heartburn/GERD symptoms could be a sign of issues with your gallbladder, especially when you said abdominal pains. I too was diagnosed with acid reflux but it turns out I never had it. It wasnt until I had to go to the ER for pain and two gallstones were stuck and I needed emergency surgery. Looking back on the year prior, all the "acid reflux attacks" I was having were actually gallbladder attacks. Wouldn't hurt to ask your Dr. for an abdominal ultrasound. 

[cyclinglady]

Hi!

The celiac antibodies tests were designed to help diagnosis celiac disease.  They were never intended to check for dietary compliance.  Doctors use them because they are the only non-evasive “tool-in-the-box”.  It is expensive to reorder endoscopy and like all medical procedures, not risk free.  
 

In my case, I never tested positive on the TTG or EMA, even when given multiple times.    My DGP IgA was the only positive on the celiac panel when I was diagnosed and I am biopsy confirmed.  Two years ago, I had a gluten exposure (suspect an antibiotic, but no proof).  I also had a bout with the flu, a tooth infection, and a cold all within weeks.  I suffered with my old celiac symptoms and this was confirmed by the blood test.  My DGP IgA was off the charts (literally).  A year later, I was still having issues.  GERD, pain, and hives.  I had even trialed the Fasano diet for a few months.  Finally, I agreed to have a repeat endoscopy.  The results?  A healed small intestine.  But, I was diagnosed with Autoimmune Gastritis (AIG). which is commonly linked to my autoimmune thyroiditis.  I had a polyp removed and now just watching for cancer which is usually associated with AIG.  
 

If you are feeling symptoms that are not resolving, consider getting another endoscopy.   Not everything is due to celiac disease.  You could have something else.   But know, that my DGP IgA was still elevated when I had my repeat endoscopy.  The blood tests are not perfect.  
 

Please research.  Do not just take my word.  

Edited June 13, 2020 by cyclinglady

[cyclinglady]

1 hour ago, JB3030CC said:

The heartburn/GERD symptoms could be a sign of issues with your gallbladder, especially when you said abdominal pains. I too was diagnosed with acid reflux but it turns out I never had it. It wasnt until I had to go to the ER for pain and two gallstones were stuck and I needed emergency surgery. Looking back on the year prior, all the "acid reflux attacks" I was having were actually gallbladder attacks. Wouldn't hurt to ask your Dr. for an abdominal ultrasound. 

Great point.  My gallbladder was removed long before my celiac disease diagnosis.  I did not have stones.  I had a non-functioning gallbladder based on a HIDA scan (0% refractory rate).    My gallbladder was actually infected and I required emergency surgery while on a business trip.   The HIDA scan saved my life.  If the ultrasound does not provide answers, insist on a HIDA scan.  

I think that if my celiac disease diagnosis had been caught, I might still have my gallbladder.  😥

[cyclinglady]

 

 

 

 

Edited June 13, 2020 by cyclinglady