Celiac or not??

[Jades Journey]

Hellooo

I have been fighting for a biopsy test for 2 years and been unsuccessful. I have had all the usual gut issues and have wanted to get to the botttom of the case as I’m tired of feeling rubbish. I am deficient in many things including B12 and iron but oral supplements don’t work well due to a malabsorption problem. 
 

in December 2023 I was tested and my results were : 

1.5 u/mL Tissue Trans IgG

7.9 u/mL Tissue Trans IgA

Considered inconclusive between 7.0- 10 u/mL. Had my bloods retested a couple of weeks later and it was disregarded as they thought it was an unintentional duplicate sample -.-

Results for February 2024 confirmed “not” celiac disease: 

1.3 u/mL Tissue Trans IgG

5.3 u/mL Tissue Trans IgA

Recently I have tested my inflammatory markers and they were okay (so unlikely IBD). I did “The York Test” and came back borderline intolerant for gluten and a medium allergy reaction for wheat (which is calculated based on antibodies in the blood. So I have decided to have the celiac blood screeening again, results below:

4.1 u/mL Tissue Trans IgG

9.8 u/mL Tissue Trans IgA

My gp appointment isn’t for over a week but a doctor has signed off my results as satisfactory and negative for celiac… I’m not convinced and really want a second opinion from someone else ahead of my appointment. 
 

thank you so much xxxx

[knitty kitty]

Welcome to the forum, @Jades Journey,

Were you eating a sufficient amount of gluten every day in the weeks prior to testing?  

Ten grams of gluten per day for a minimum of two weeks is required to get the antibody levels high enough to leave the intestines (where they are made) and get into the blood stream (where they can be measured).

 

[Scott Adams]

It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering.

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day: