Test says no, but body says Yes?

[Travel Celiac]

New here, and came for answers to this.  I was diagnosed in the Summer of 2007, at the same time two of my kids also tested positive. Actual doctor, actual tests. Have lived as clean as possible for 17 years, with the inevitable accidents (and symptoms and recovery), none recent, thankfully.  I have accepted that I am celiac and have lived accordingly – as have my now-grown kids.

Last week, along with loads of other tests, my primary ordered a Celiac Disease Antibody panel and I just saw the results.  The summary stated "no antibodies detected," although my IgA total was quite high at 425.  The Tissue Transglutaminase IgA was less than <1.0. 

My question is whether antibodies would be found in my body after all this time living gluten-free?

To be clear, if I get gluten and do NOT know it, I will get sick later no matter what. So any psychological element is right out of it; I get nailed every time if there's gluten in my food. Later, we will trace everything and find it.  Small wonder I work so hard to keep gluten out of my diet. I am a senior citizen, and watch my health very carefully.  But now this test seems to indicate I don't have celiac disease... or do I?  LIke the title says, the test says no, but my body says yes and has for 17 years. Any thoughts on what's going on?  Happy to answer question. Thank you.

[trents]

Welcome to the forum, @Travel Celiac!

The high total IGA does not indicate that your celiac disease is actively flaring up. Total IGA is not a test for celiac disease per se but rather is test given to determine if you are IGA deficient, which you are not. IGA deficient people will experience artificially low individual IGA antibody tests such as the tTG-IGA and can result in false negatives. 

The other question is why is your total IGA count high? That can indicate other health issues besides celiac disease so I suggest you research that question and also talk to your physician about it. Here is an article that explains the various tests that can be run to detect celiac disease and the significance of the total IGA test:

Having said all that, I gather that for some reason you are under the mistaken impression that, having been diagnosed with celiac disease some years ago, your recent antibody test should still show elevated levels if you actually do have celiac disease, at least when you have accidental gluten exposure. I think you misunderstand how this all works and what the testing is designed to detect. 

When someone has celiac disease, the consumption of gluten triggers an autoimmune response that, typically, causes inflammation in the lining of the small bowel. This inflammation produces specific antibodies that can be detected by serum testing specifically designed to look for these antibodies. Upon the onset of celiac disease, it can take weeks or months of consistent exposure to gluten for the serum antibody levels to build up to the point where they are detectable by the tests. Once gluten is  removed from the diet, inflammation begins to subside and antibody levels begin to drop. An occasional gluten exposure will not result in restoring antibody levels to detectable amounts once they have receded to normal levels after going gluten free. Again, it takes weeks or months of consistent gluten ingestion for the antibody counts to reach sufficient levels to produce a positive test result.

Yes, you still have celiac disease but it looks like from your recent tTG-IGA test result that you are doing a good job with the gluten free lifestyle.

[knitty kitty]

Welcome to the forum, @Travel Celiac!

You have to be consuming gluten for your body to trigger the autoimmune response and produce anti-gluten antibodies.  If you're not consuming gluten, the autoimmune response is not triggered and you won't produce anti-gluten antibodies. 

Celiac Disease is genetic.  Your genes don't change.  You will always have the Celiac genes whether you eat gluten or not.  

Your negative tTg-IgA  shows that you are successfully keeping gluten out of your diet.  You are doing very well on that point, but you still are Celiac.  Be proud of your accomplishment!  

[Travel Celiac]

Thank you, trents and knitty kitty!  You have confirmed what I thought:  Clean living from a gluten-free perspective has meant basic tests would show low-to-no antibodies.

It was my doctor who was wondering if I even had it, based on these tests.  He's not a gastro-doc, but otherwise a kind and competent doctor. He seems genuinely interested in what it means to be celiac, and also seems only somewhat familiar with tests & protocols. Hey, at least he's open to learn.

Me, I never had a doubt.  I just wondered if these tests indicate that I'm doing a good job and the answer is Yes.  Hooray!

As for the concern over my high overall IgA, I recently injured myself helping a friend not die, and I have loads of inflammation in my lower back and hips at the moment.  Perhaps that is the source of the high IgA? Dunno.  I dragged a short 200 lb woman around her kitchen like a sack of potatoes as I repeatedly did the Heimlich maneuver (I am quite tall, so kinda had to pick her up). Successful after the 8th heave-ho, to our mutual relief. Good ol' Navy medical training came in good for something!  But later, after the adrenaline wore off, I was in paaaaain.

I wonder if another source was that I recently had a bad cold, like to the point of taking a COVID test (neg), which knocked me on my butt for a couple weeks. The tests came just a couple days after I was symptom-free. Could that do it?

My big takeaway:  I have done well in avoiding gluten.  So huzzah for that. Thank you both.

[knitty kitty]

@Travel Celiac,

Doing a happy dance with you!!!  You're doing very well!!!  Kudos for being a rescuer!  Hip Hip Hooray!

Yes, strenuous exercise can raise your IgA, as can viral infections like the common cold or Covid.  

https://pmc.ncbi.nlm.nih.gov/articles/PMC9574171/

Do discuss with your doctor the nutritional deficiencies that frequently occur in Celiac Disease and on the gluten free diet.  Deficiencies in zinc, iron, the B vitamins, Vitamin C and Vitamin D can all affect your ability to fight off viruses and repair stressed muscles.  

[trents]

https://www.webmd.com/a-to-z-guides/immunoglobulin-test

https://labs.selfdecode.com/blog/high-iga/

I think for total IGA to be elevated to the point of being out of normal range there would need to be some chronic inflammation or infection happening, not just a short term event. As I said, I would visit with your doctor over this and I would ask to get that checked again in the near future after your back pain and cold have been resolved for a time.

Edited December 16, 2024 by trents

[PlanetJanet]

Hi, Travel Celiac,

After several years of gastro problems, reading Wheat Belly, and some other books, tracking my food, and finally swearing off wheat, barley, and rye, (for years), I went to a gastroenterologist.  I insisted on being tested for celiac disease, including genetic testing, and the answer he gave was an email:  "You do not have celiac disease."  I was very confused and wanted to understand more.  I insisted on getting the full report from him from the lab.  I read and researched and read and researched everything I could find.  It can't be diagnosed from the blood test if you are not eating gluten, which I wasn't.  I am not willing to eat gluten for a month to get another blood test.  The risks are too disgusting to deal with.  People can test positive and not be having any problems at all.

The genetics are not black or white either.  Apparently, there is a gene "dose effect."  You could have a strong genetic profile, or a lot of the genes, or just one allele on one gene.  DLQ2 or DLQ8, or something.  Whether celiac disease or "gluten sensitivity," or "Non-Celiac Gluten Sensitivity," presents itself, apparently, can depend on your gene dose, your age, your gender, or having a stressful life, maybe.  I raised my daughter by myself and am still battling poverty, political worry, family and childhood abuse, (no drug or alcohol problems, thank goodness).  This gluten problem is, apparently, mostly a female issue, as well, 2 to 1 female.  The medical establishment does not put an equal amount of resources into female medicine as it does to men's medicine, no matter how far we've come.  Anyway, I never had problems till the last few years (I am 64).  BTW I threw away my lab report after many years of filing it away.  I had the one allele on one gene, DLQ2 or 8, IDK. Too frustrated with providers giving me that blank stare when I try to talk to them about it.  They don't believe me!

[PlanetJanet]

I will never have a formal diagnosis.

[trents]

"This gluten problem is, apparently, mostly a female issue, as well, 2 to 1 female.  The medical establishment does not put an equal amount of resources into female medicine as it does to men's medicine, no matter how far we've come."

PlanetJanet, while it is true that more women than men are diagnosed with celiac disease, it may not be true that it afflicts twice as many women as men. The discrepancy could also be due to a significant difference in the percentage of men who seek medical attention for symptoms signaling possible celiac disease vs. women who do. Men tend to ignore health problem symptoms and put off seeking medical attention more than women do I believe.

Can you site sources in support of your assertion that the medical establishment does not put equal amount of resources into female medicine as it does into men's medicine? 

[PlanetJanet]

Hi, trents,

Thanks for responding!

One book I read is called, Doing Harm, by Maya Dusenbery.  She has wonderful perspective and insight, and it's all research-based.  It's about how women can't get treated.  Everyone should read this!  I wouldn't mind reading it again, even.  She believes that women are so busy taking care of families, working, etc., that we are more likely to ignore our pain and symptoms for longer.  Men have women bugging them to go to the doctor.  Women don't have anyone telling us that.  We don't have time to go.  Providers think we are over-emotional, histrionic, depressed, have low tolerance to pain...Men get prescribed opioids for the same symptoms women are prescribed anti-depressants. 

My car crash in January 2020 made going to the doctor a full-time job.  I grew up with 2 rough and tumble brothers, played outside, climbed trees.  I was tough and strong, pain didn't bother me, I knew it would heal.  But do you think I could get treated for back pain--as a woman?  I am so familiar now with the brush-offs, the blank looks, the, "Take your Ibuprofen," the insinuation that I am just over-reacting, trying to get attention, or even, "Drug Seeking."  Took almost 2 years, but what was happening was Degenerative Sacroiliitis.  I couldn't walk right, my gait was off, effected my entire spine because gait was off.  I had braced myself with my legs in a front-impact, slightly head-on crash with someone who made a left turn in front of me from the opposite direction.  I finally had SI Joint Fusion surgery, both sides.  It's not a cure. I have given up on trying to get properly treated.  There is so much pain with these spine issues caused by bad gait:  scoliosis, lithesis, arthropathy, bulged disc, Tarlov cysts.  And I can't take anything because of my bad tummy.

Not that I would ever hurt anyone, but I can relate to Luis Mangione who couldn't get treated for his back injury.

I feel so alone.

[knitty kitty]

@PlanetJanet,

Sorry to hear about your back pain.  I have three crushed vertebrae myself.  I found that a combination of Thiamine, Cobalamin and Pyridoxine (all water soluble B vitamins) work effectively for my back pain.  This combination really works without the side effects of prescription and over-the-counter pain meds.  I hope you will give them a try.

Here are articles on these vitamins and pain relief...

Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review

https://pubmed.ncbi.nlm.nih.gov/35156556/

And...

Role of B vitamins, thiamine, pyridoxine, and cyanocobalamin in back pain and other musculoskeletal conditions: a narrative review

https://pubmed.ncbi.nlm.nih.gov/33865694/

[PlanetJanet]

Thank you, so much, knitty kitty.  I will give this a try, definitely!  Take care, and Happy Holidays!