Labs ? Awaiting in person follow up with my GI

[Seabeemee]

 

My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean.

I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea).  I also have been diagnosed with GERD and some associated issues hence the endoscopy. I also was diagnosed with NAFLD after an abdominal CT scan in December - which surprises me because I gave up alcohol 5 years ago, workout 5 days a week, cardio / weights and cook from scratch every night. Anecdotally,  I do feel better when I do not eat a lot of carbs and have been staying away from gluten 95% of the time until my follow up. 

History: I had an emergency bowel obstruction operation in August 2021 for a double closed loop obstruction, open surgery removed 40 cm of my small intestine, my appendix, cecal valve and illeocectomy. Beside the fact that this put me in the situation of no longer being able to absorb Vitamin B12  from my diet and having to  inject Vit B 12 2x a month, I also became Iron deficient and am on EOD iron to keep my levels high enough to support my Vitamin B12 injections, as well as daily folic acid. I tested positive for pernicious anemia in 2022 but most recently that same test came back negative. Negative Intrinsic Factor.

My results from the biopsies showed 2nd part of Duodenum, small bowel Mildly patch increased intraepithelial lymphocytes with intact villious architecture. Comment: Duodenal biopsies with normal villous architecture and increased intrepithelial lymphocytes (Marsh I lesion) are found in 1-3% of patients undergoing duodenal biopsy, and an association with celiac disease is well established however the specificity remains low. Similar histologic findings may be seen in H pylori gastritis, NSAID and other medication use including olmesartan, bacterial overgrowth, tropical sprue and certain autoimmune disorders.

So my GI ordered Labs for Celiac confirmation: Sorry I couldn’t upload a photo or pdf so typed below:

TEST NAME                               IN RANGE and/or RESULTS

RESULTS: 

IMMUNOGLOBULIN A :           110

GLIADIN (DEAMIDATED)

AB (IGG, IGA)                            <1.0

GLIADIN (DEAMIDATED)

AB (IGA)                                     <1.0

GLIADIN (DEAMIDATED)

AB (IGG)                                    <1.0

TISSUE TRANSGLUTAMINASE

ANTIBODY, IGG, IGA

TISSUE TRANSGLUTAMINASE

AB, IGG                                     <1.0

TISSUE TRANSGLUTAMINASE

AB, IGA                                     <1.0

INTERPRETATION: <15.0 ANTIBODY NOT DETECTED 

> OR = 15.0 ANTIBODY DETECTED

RESULTS:

HLA TYPING FOR CELIAC DISEASE INTERPRETATION (note The patient does not have the HLA-DQ associated with celiac disease variants)

More than 97% of celiac patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. Genetic counseling as needed.

HLA DQ2 : NEGATIVE

HLA D08: NEGATIVE

HLA VARIANTS DETECTED:

HLA DA1* : 01

HLA DA1* : 05

HLA DQB1*: 0301

HLA DQB1*: 0501

RESULTS REVIEWED BY:

Benjamin A Hilton, Ph.D., FACMG

I appreciate any input, thank you. 

 

 

 

 

[trents]

Welcome to the celiac.com community, @Seabeemee!

The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption. 

Edited

Edited January 19 by trents

[Seabeemee]

Thanks for your reply Trents…most appreciated. 

I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population? 

Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that. 

I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently.

That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go. 

Thanks again.

 

 

[trents]

Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.