I need a little help deciphering my test results

[spincricket]

Hi Folks,

This is yet another "help me understand my results" thread. I have all the non-specific symptoms associated with Celiac for 6 months now.

Test results:

tTGA-IGA: Negative

Biopsy: Positive

HLA: Negative for DQ2/DQ8, but have half of the DQ2 Heterodimer (A1*0501). Testing via Labcorp.

Vitamin D 25-OH: 9.0 nG/ml

I thought I was fully negative upon reading the Labcorp report. It states I am negative for both DQ8 and DQ2, but buried in the report is the statement that I am positive for the Alpha subunit of the DQ2 heterodimer. The report goes on to say that the risk of Celiac with this is something minute like .005%....Which to my ignorant self means 0%, but I understand that could be the general population in the absence of a positive biopsy. I am at 2 weeks gluten-free diet with only marginal improvements if any. I have a follow-up in three weeks and I'm just hoping for any insight, context, further reading anyone might be able to provide with results like these. I have done quite a bit of reading and research already, but its mostly primary sources and it gets crazy technical really fast.

Thanks in advance for any time and help.

[Scott Adams]

Welcome to the forum! Is there a chance they did a test for Immunoglobulin A (IgA)? I ask because if you are deficient for this test it will lower scores on certain tests, and the normal celiac blood test protocol is described in this article:

 So it is possible to have a negative blood test (especially if you have low Immunoglobulin A - IgA), and a positive biopsy, which still likely means that you have celiac disease. Were you eating a good amount of gluten daily before your blood test? The recommendation is 2 slices of wheat bread for 6-8 weeks before doing a blood test. If not, that is another reason why you cold have low levels and test negative.

Last, there is something called non-celiac gluten sensitivity, which ~10% of people have, while only 1% have celiac disease, and unfortunately there isn't a test yet for NCGS (some people have elevated antibodies, but not over the reference range for celiac disease, some don't, but most people find out they have this when their symptoms go away after going gluten-free).

[RMJ]

The Ttg IgA is only one of four possible antibody tests for celiac.

There is also Ttg IgG (which should be run if your total IgA is low, DGP IgA and DGP IgG.  Some people are only positive on the DGP blood tests. (Deamidated gliadin peptides).

[trents]

2 hours ago, spincricket said:

Hi Folks,

This is yet another "help me understand my results" thread. I have all the non-specific symptoms associated with Celiac for 6 months now.

Test results:

tTGA-IGA: Negative

Biopsy: Positive

HLA: Negative for DQ2/DQ8, but have half of the DQ2 Heterodimer (A1*0501). Testing via Labcorp.

Vitamin D 25-OH: 9.0 nG/ml

I thought I was fully negative upon reading the Labcorp report. It states I am negative for both DQ8 and DQ2, but buried in the report is the statement that I am positive for the Alpha subunit of the DQ2 heterodimer. The report goes on to say that the risk of Celiac with this is something minute like .005%....Which to my ignorant self means 0%, but I understand that could be the general population in the absence of a positive biopsy. I am at 2 weeks gluten-free diet with only marginal improvements if any. I have a follow-up in three weeks and I'm just hoping for any insight, context, further reading anyone might be able to provide with results like these. I have done quite a bit of reading and research already, but its mostly primary sources and it gets crazy technical really fast.

Thanks in advance for any time and help.

First, we not infrequently get posters on this forum who have this same pattern of neagtive antibody testing and positive biopsy. One thing that can cause a negative tTG-IGA is low total IGA. Was the total IGA count included in the results? Did the doctor even order it? It's also too bad that a full celiac panel was not ordered instead of just the tTG-IGA. This might help: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Second, there are other things besides celiac disease that can cause blunted villi in the small bowel. NSAIDS, some prescription mardications like losartan and others in that family, some parasites and some bowel diseases like Crohn's I think. Google: What can cause small bowel villi blunting besides celiac disease.

Third, I believe there is still a lot we don't know about celiac disease and genetics. Evidence is turning up that there are more genes involved than just DQ2 and DQ8.

Fourth, most people who believe they are living a gluten free lifestyle really aren't. Studies show that. Perhaps this might help:

Fifth, give it some more time.

Edited April 26, 2022 by trents

[spincricket]

45 minutes ago, Scott Adams said:

 So it is possible to have a negative blood test (especially if you have low Immunoglobulin A - IgA), and a positive biopsy, which still likely means that you have celiac disease. Were you eating a good amount of gluten daily before your blood test? The recommendation is 2 slices of wheat bread for 6-8 weeks before doing a blood test. If not, that is another reason why you cold have low levels and test negative.

Hi Scott,

Thank you for all the info. I should have included the result of the Celiac Panel, I messed up.

Tissue Transglutaminase Antibody IgA: Negative

Tissue Transglutaminase Antibody IgA: <.50

Immunoglobulin A (IgA): 161

I'm confident I did not have the recommended 2 slices of bread per day for 6-8 weeks. I had probably been avoiding it other than some Ezekiel bread before my doctors visit. Then 2 weeks after the visit, I had the Celiac Panel test done.

[trents]

spincricket, can you post the lab reference ranges for negative and positive. You numbers don't mean much without that and different labs use different reference ranges.

And if you were avoiding gluten in the weeks leading up to the antibody test you likely sabotaged it.

[spincricket]

13 minutes ago, trents said:

spincricket, can you post the lab reference ranges for negative and positive. You numbers don't mean much without that and different labs use different reference ranges.

And if you were avoiding gluten in the weeks leading up to the antibody test you likely sabotaged it.

Yes, I was avoiding carbs on account of my NASH diagnosis. Not gluten specifically as I didn't have any idea that was in the differential at the time. But from what I remember it probably got cut quite a bit and my GI didn't have me do a gluten challenge.

Tissue Transglutaminase Antibody IgA: Negative --- Reference: Negative

Tissue Transglutaminase Antibody IgA: <.50 --- Reference: <=14.9 U/mL is Negative

Immunoglobulin A (IgA): 161 --- Reference: 81-463 mg/dL (The magnitude of the reported IgA levels cannot be correlated to an endpoint titer. Reported results were determined using assays performed on the BioRad BioPlex 2200)

Ok, that should be it. That's exactly as they show on the report.

 

[spincricket]

14 minutes ago, trents said:

Second, there are other things besides celiac disease that can cause blunted villi in the small bowel. NSAIDS, some prescription mardications like losartan and others in that family, some parasites and some bowel diseases like Crohn's I think. Google: What can cause small bowel villi blunting besides celiac disease.

 

Good point, I had seen that there are other causes for blunted villi. I don't take NSAIDS or the blood pressure meds that were shown to cause villous damage. I'm waiting on SIBO results. And I tested negative for lactoferrin and calprotectin which my GI says makes it quite unlikely to be Crohn's or UC. Apart from parasites (have not had testing) the list just gets rarer and rarer as we go down it. But I will certainly post any more findings upon my follow-up, any more test results, etc...just for future reference for those in the same boat.

 

THanks.

[Wheatwacked]

3 hours ago, spincricket said:

Vitamin D 25-OH: 9.0 nG/ml

If this is correct you are so, so deficient in D! Deficient is anything less than 19 ng/ml. A lifeguard in August is 90 mg/ml. Part of the differential diagnosis if multiple vitamin and mineral deficiencies. Try to get a vitamin panel. You are likely also deficient in all the B vitamins, choline, iodine, potassium, zinc, etc, either through malabsorption or food choices.

Urinary potassium is a potential biomarker of disease activity in Ulcerative colitis and displays in vitro immunotolerant role

Alterations in One-Carbon Metabolism in Celiac Disease

Vitamin D Is Not as Toxic as Was Once Thought

Possible Role of Vitamin D in Celiac Disease Onset

Edited April 26, 2022 by Wheatwacked

[Scott Adams]

18 hours ago, spincricket said:

Immunoglobulin A (IgA): 161

I'm confident I did not have the recommended 2 slices of bread per day for 6-8 weeks. I had probably been avoiding it other than some Ezekiel bread before my doctors visit. Then 2 weeks after the visit, I had the Celiac Panel test done.

So it looks like you don't have low IGA, so that means those tests would be accurate had you been eating the recommended amount of gluten for 6-8 weeks leading up to the test, which you said that you did not do. Not eating gluten, or eating little gluten before the tests could cause false negative results.

[areed]

My initial blood panel was pretty low, I believe I scored about 19.7 which was on the boarder. At that time I was not eating very much gluten. My biopsy came back positive. I think the best way to determine would be that. 

The biopsy is generally considered the most accurate way to determine Celiac disease or not so I would follow that. Make sure you are reading all the labels when choosing "gluten free" items. Often, one instance of cross contamination can lead to symptoms for days. Therefore, be very careful about wiping things off and checking labels. Following a true gluten free diet should help with symptoms. Consider eating only clean meats and fruits and veggies for a week or so and see if that helps. 

[spincricket]

On 4/26/2022 at 4:55 PM, Wheatwacked said:

If this is correct you are so, so deficient in D! Deficient is anything less than 19 ng/ml. A lifeguard in August is 90 mg/ml. Part of the differential diagnosis if multiple vitamin and mineral deficiencies. Try to get a vitamin panel. You are likely also deficient in all the B vitamins, choline, iodine, potassium, zinc, etc, either through malabsorption or food choices.

Yes, I do believe that is correct. It's been twice now in past few months that it's that low. I will request a vitamin panel at my followup. Thank you for the reading material. Very interesting stuff. I had seen the vitamin D link mentioned briefly but hadn't read anything in depth about proposed mechanisms. 

[spincricket]

On 4/27/2022 at 5:46 PM, areed said:

My initial blood panel was pretty low, I believe I scored about 19.7 which was on the boarder. At that time I was not eating very much gluten. My biopsy came back positive. I think the best way to determine would be that. 

The biopsy is generally considered the most accurate way to determine Celiac disease or not so I would follow that. Make sure you are reading all the labels when choosing "gluten free" items. Often, one instance of cross contamination can lead to symptoms for days. Therefore, be very careful about wiping things off and checking labels. Following a true gluten free diet should help with symptoms. Consider eating only clean meats and fruits and veggies for a week or so and see if that helps. 

I think maybe I was just surprised that I tested negative for the full complement of either DQ2/DQ8 as my doctor is convinced I have Celiac. But then digging into the numbers a little more, another way to conceptualize it is that 5 out of every 100,000 people who carry 1/2 the DQ2 gene (like me) get Celiac. So much, much rarer than those who have the full dimer, but it's not impossible. Thus, I'm finding it easier to reconcile that with my positive biopsy. And at the end of the day if the gluten-free, a true gluten-free, diet helps with symptoms then that's all that matters. I have a strong suspicion I have SIBO too as the test solution really messed me up with bloating and gas. 

According to that link that Scott posted, I'm falling short on the gluten-free side of things with respect to cross contamination. My kitchen isn't really gluten-free. 

[Wheatwacked]

On 4/26/2022 at 4:19 PM, spincricket said:

it gets crazy technical really fast.

Read the intro, skim the research protocols and read the discussion and conclusions. 😉

[spincricket]

Just including an update about the SIBO test, it is positive. I have read that SIBO can cause villous damage similar to celiac disease and that there is a correlation between celiac disease and SIBO. I'll post the outcome of my follow-up next week. See what my GI thinks about the genetic test results and SIBO in light of positive biopsy.

[trents]

Thanks for the update and do keep us posted.