Help Me Understand Blood Test Results?

[Magnus1852]

First timer here. I know there are a lot of these threads and deep explainer articles, but looking through them, I'm still having trouble making sense of my results. I'd appreciate any help in interpreting these.

Antigliadin Antibody IgA
Your Value: 10 units
Standard Range: 0 - 19 units

Gliadin Deamidated Antibody IgG
Your Value: 26 units
Standard Range: 0 - 19 units

TTG Antibody IgA
Your Value: <2 U/mL
Standard Range: 0 - 3 U/mL

TTG Antibody IgG
Your Value: 12 U/mL
Standard Range: 0 - 5 U/mL

Endomysial Antibody IgA
Your Value: Negative
Standard Range: Negative

IgA Quantitative
Your Value: 612 mg/dL
Standard Range: 90 - 386 mg/dL

I ended up in the ER after weeks of increasing abdominal pain. After negative CAT scan and stomach/gall bladder ultrasound, was sent to a GI nurse practitioner who got this bloodwork done. With these results, they said to "live and eat as though you have celiac disease" and got me a GI appointment in about another month from now. I've been staying away from gluten entirely, as far as I'm aware, for about 5 or 6 weeks now.

Symptoms definitely improved, but they won't go away entirely and the severity keeps coming back for days at a time. Trying to eliminate other foods that I may now be sensitive to due to celiac (dairy, onions, nightshades), but I'm wondering how certain my blood test results are for this diagnosis, or if there's a possibility that something else (or something additional) is going on. Or does it just take being free from gluten for longer before the symptoms stop recurring?

Thanks for your help!

[trents]

Welcome to the forum, Magnus!

Your antibody results indicate you could have celiac disease or maybe NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms but NCGS does not damage the villi that line the small bowel, as celiac disease does, and there currently is no definitive test for NCGS. Celiac Disease must first be ruled out. You scored weak positives for the tTG-IGG and the Gliadin Deamidated Antibody IgG which are second tier tests that are not as specific for celiac disease as are the tTG-IGA and the Endomysial IGA.

One thing you need to know is that starting a gluten free diet before all testing is complete will likely invalidate any future testing. If you start gluten-free and you have celiac disease you allow healing to take place in the villi that line the small bowel so that a biopsy might be negative should the GI doc you will be seeing want to do an endsocopy with biopsy of the small bowel. This is considered to be the gold standard of celiac disease diagnoses. And, of course, cutting out gluten will allow inflammation in the small bowel lining to subside such that no celiac antibodies would be produced. The Mayo Clinic recommends for those going back on gluten after a prolonged hiatus to consume 2 slices of wheat bread (or the gluten equivalent) for 6-8 weeks before antibody testing and for 2 weeks prior to an endoscopy/biopsy. If I were you, I'd go back on regular amounts of gluten until the GI doc consult and see if he want to order more antibody testing or go right for the biopsy. That is to say, unless going back on gluten makes you extremely ill.

[Magnus1852]

Hi trents, thanks for the information. Weak positive results certainly aren't ideal for trying to pin down the diagnosis, but it's helpful to have that context, thank you. My GI NP said that my GI doc appointment would be to follow up on how my symptoms are responding to the gluten-free diet, and then from there, we'll discuss the possibility of the upper endoscopy or other GI testing (like a HIDA scan, in case my gall bladder is having issues).

While my primary symptom is just abdominal pain (with loose stool and occasional diarrhea), during the worst of it, I did have some numbness in my limbs and brain fog, and nutritional bloodwork revealed a B12 deficiency. So those are a couple other signs that seem to increase the likelihood of it being celiac. In your time on these forums and digging into the research, have you found other diseases/syndromes that present this similarly to celiac/NCGS that might line up with these symptoms, so I could bring those up with the GI/investigate other avenues?

I understand the risk of a false negative with the endoscopy if I'm off gluten for a while, but I don't know if I can manage even two weeks of a gluten challenge if my symptoms will be anything like the pain I went to the ER for. Guess I'll have to see what the GI doc says.

 

[trents]

From what the GI NP said, it sounds like they may not be as interested in sorting out whether you have celiac disease as opposed to NCGS as they are seeing if gluten consumption is causing you issues of some kind. There are some other intestinal diseases that might throw weak positives in the secondary antibody tests. I'm thinking of Crohn's for one.

Edited July 12, 2023 by trents

[Russ H]

21 minutes ago, Magnus1852 said:

Hi trents, thanks for the information. Weak positive results certainly aren't ideal for trying to pin down the diagnosis, but it's helpful to have that context, thank you. My GI NP said that my GI doc appointment would be to follow up on how my symptoms are responding to the gluten-free diet, and then from there, we'll discuss the possibility of the upper endoscopy or other GI testing (like a HIDA scan, in case my gall bladder is having issues).

While my primary symptom is just abdominal pain (with loose stool and occasional diarrhea), during the worst of it, I did have some numbness in my limbs and brain fog, and nutritional bloodwork revealed a B12 deficiency. So those are a couple other signs that seem to increase the likelihood of it being celiac. In your time on these forums and digging into the research, have you found other diseases/syndromes that present this similarly to celiac/NCGS that might line up with these symptoms, so I could bring those up with the GI/investigate other avenues?

I understand the risk of a false negative with the endoscopy if I'm off gluten for a while, but I don't know if I can manage even two weeks of a gluten challenge if my symptoms will be anything like the pain I went to the ER for. Guess I'll have to see what the GI doc says.

 

Hi Magnus - can you describe your symptoms more fully?

Abdominal pain - which quadrant and how often?

Other gut issues - bloating, burping, reflux?

Do you have foul smelling, difficult to flush bowel movements? How often?

When you say limb numbness - in all limbs, any sensations (pins and needles) etc?

Brain fog - do you have memory problems, anxiety, sense of doom?

Any other seemingly unrelated health issues - body odour, skin rash, night sweats, clammy skin, sore scalp, painful joints or tendons, heart arrhythmia, chilblains, etc?

[Magnus1852]

Thanks for the reply, trents. Yeah, I guess their approach at this point is to just see if gluten's a problem and take it from there. Not the most urgent course of action...

Russ: The abdominal pain is most frequent in the mid/lower-right portion, but it can spread to the mid/lower-left portion and, at its worst, sometimes to the back mid/lower portions as well. I have it at least once or twice a day, sometimes more. Most days, I'd rate it a 1–2 out of 10, but then there are stretches of two or three days at a time where the pain spikes to a 4–5 out of 10. It was worse than that in early June, when all this first started, where it hurt more every day until I went to the ER and just fasted for a couple days, which brought the pain down. Then I started eating gluten-free, and the pain hasn't returned to quite those extreme levels since.

I've had somewhat excessive burping for maybe 15 years or so, but for most of that time, I just presumed it was a carb-heavy diet. I self-diagnosed laryngopharyngeal (silent) reflux maybe 3 years ago, when I noticed the recurring pain I would get in a particular spot in my throat only came after eating fatty and acidic foods. From those data points, I'm wondering if I might have a weakened lower esophageal sphincter as well. Other than that, only other gastro symptoms come when the pain flares up: loose stools, under-digested food, some diarrhea, and gurgling in my intestines. I had an acute bout of nausea that accompanied an increase in pain about a week ago, after having fatty meat, green onions, and tomatoes in my meals for a few days, so I cut those out for now too.

The limb numbness was in the middle section of my left arm and from the knee down in my left leg. It was just that: numbness, no pins and needles. That would come and go for an hour or two at a time, sometimes for most of the day. I also once experienced tingling across my whole upper chest around the same time as these symptoms, that lasted maybe 20 minutes. After getting past the worst of the pain, I've only had the arm numbness come back a couple times when the pain has spiked again.

The brain fog was mostly difficulty focusing, discomfort when focusing too much on a task, word-finding issues, and some light fatigue. Haven't experienced it again since the onset of the worst pain near the beginning. I've been diagnosed with an anxiety disorder for about 20 years now that's manageable about 95% of the time, but when the pain is bad it can sometimes trigger that anxiety. But I don't think I've felt new anxiety/sense of doom from this current issue.

Only other concurrent health issue is a knee injury from December that still hurts and hasn't properly recovered, but I think that might be a torn meniscus or MCL that wasn't properly diagnosed. Getting an MRI next week for that. I have had some random, minor bouts of itchiness in different places that I haven't found a cause for, but no visible rashes or anything. 

In the 10 weeks leading up to all this starting, though, I had a bit of a run of medical issues: COVID, a perianal abscess that had to be cut and drained, bad tinnitus side effect from the amoxicillin and clavulanate antibiotics for that, then switched to cipro and flagyl antibiotics which gave me worse effects: feeling flush, chills, nausea, tension in my gut, cramps, and anxiety. I was told I could stop them early and immediately got an oral thrush infection for a few days. Once all that cleared up, the pain in my abdomen started me down this road to possible celiac. I read somewhere that the onset of celiac can be triggered by acute infection, surgery, or antibiotics, so I wouldn't be surprised if all of that running my immune system through its paces could have started the ball rolling.

In your experience, does any of that strengthen the possible celiac diagnosis? Or point to something else being the culprit?

[Scott Adams]

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.