Negative bloodwork but unsure next steps

[Sunflowers06]

Hi all! I’m so glad I found this community!

I recently had blood work done to check for celiac and it came back negative (I’ll post results below). I’m relieved but I was so convinced gluten was the issue

Gliadin AB igA      0.4

Gliadin AB igG     0.4

TTG igA      <0.5

Endomysial igA.     Negative 

Reticulin AB igA.    Negative 

 

For years, I have had 

chronic daily headaches 

weekly migraines 

joint pain and swelling 

brain fog 

anxiety 

skin issues/rash

bloating 

Low immune system (get sick every month) 

Chronically low b12 

 

Do you think it’s worth pursuing more testing or committing 100% to a gluten-free lifestyle? 
 

thanks! 

[trents]

Welcome to the forum, @Sunflowers06!

By any chance were you already cutting back on gluten when you had the blood draw done for celiac antibody testing?

Also, a test that should have been run that wasn't is "total IGA." If total IGA is low then it will skew other IGA test down toward the negative range. I would ask for that one to be run.

Are your iron stores low by any chance? If B12 is low, iron stores (such as hemoglobin and ferritin) will often be low. This can also drive IGA antibody tests down toward the negative range.

One more thing. You reported your Gliadin IGA and IGG scores but you did not include the reference range for negative vs. positive. Since there different labs used their own ranges this is necessary information.

[Sunflowers06]

Thank you for all the info @trents

the reference range for my test was 0.0-14.9 U/ml. The ones labeled “negative” didn’t include a numeric range 

I had cut down on gluten but was still consuming enough of it I think? 
 

and yes!! I am low in iron as well. I didn’t realize that would affect it?

Thanks

[trents]

"the reference range for my test was 0.0-14.9 U/ml." Which test or tests do you refer to?

Your symptoms align well with celiac disease and the fact that you were eating a lower gluten diet and have low iron stores casts doubt on the validity of your antibody testing. It is also possible that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease and is 10x more common. But there is not test for NCGS. Celiac disease must first be ruled out. The antidote for both is the same. Namely, life-long abstinence from gluten.

If you really want to pursue celiac disease testing and be confident the testing is accurate, you would need to get serious bout a "gluten challenge". That would involve the daily consumption of at least 10gm of gluten daily (about 6 slices of regular bread or the wheat equivalent) for at least 2 weeks leading up to the day of testing. You should also look into an endoscopy with biopsy of the small bowel lining to check for the damage celiac inflammation causes to the villous lining of that part of the intestines where essentially all of our vitamins and minerals are absorbed. Some people are negative for the antibody testing but positive for the biopsy.

[Sunflowers06]

@trents Thank you! The reference range was for 

Gliadin AB igA  

Gliadin AB igG   

TTG igA    
 

Wow that is a lot of bread for the gluten challenge!! I normally eat 1 piece a day. I will look into all of your suggestions. Thank you 

[trents]

The gluten challenge guidelines are in the process of being revised to reflect the fact that formerly they were not intense enough and too many people who actually had celiac disease were testing negative in the blood antibody stage of testing. But you will still find a lot of the older guidelines on the internet which generally advocated 1-2 pieces of wheat bread for 6-8 weeks daily. The revision is heading in the direction of more gluten over less time, say 2-3 weeks.

There is always the option trialing a gluten free diet to see what impact it has on your symptoms - and this can be necessary in the situation where a person cannot tolerate the challenge because it makes them too ill - but realize once you embark on the gluten free diet and practice it for a good period of time, the challenge will likely be even more difficult than before. The reason is that people tend to lose whatever tolerance they had while still consuming gluten.

Many people just seem to need an official celiac diagnosis to stay on the bandwagon. Otherwise, they tend to rationalize and find a way to cheat.

[Scott Adams]

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: