diagnostic testing variance

[KDeL]

For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum.

I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)

 

Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick.

Any thoughts??

[Scott Adams]

I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease.

The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances.

Do you have more info about your blood test results? Did they do a total IGA test as well? 

[trents]

Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well: 

Immunoglobulin A (IgA) Test

Serum IgA Test

IgA Serum Levels Test

IgA Blood Test

IgA Quantitative Test

IgA Antibody Test

IgA Immunodeficiency Test

People who are IGA deficient should have IGG tests run as well.

Check this out: 

 

I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.

Edited March 7 by trents

[KDeL]

Thank you both... yes it's a big mystery and seems so inconclusive. However the biopsy is a huge piece and my history of symptoms.

I agree too, that the on and off of eating gluten-free probably messes with the tests.

I recently had IGA SERUM (147) and TTG IGA ANTIBODY (>1.23) and had been eating gluten-free for about 6 days. Prior to that a low gluten diet that didn't seem to give symptoms when before, even a low gluten diet did. SO odd.

Got a msg from the GI Dr that I should try a gluten challenge and I am concerned with feeling awful. I wish there was a definitive diagnostic test that just told me yes or no. I just don't want to eat gluten if I am damaging my insides without even knowing it when symptoms are not present. If I got the bad reaction like I did from the doughnut every time, I could more easier avoid gluten!

🫤

oooh GI dr just msged me that she put in for me to have genetic testing! you think this will help??

[Scott Adams]

Do you happen to have the reference ranges for those blood tests, as they vary from lab to lab? Just the results don't mean much without those ranges.

A gluten challenge would be the only way to get a formal diagnosis of celiac disease, and if the idea of eating lots of gluten for weeks sounds horrible to you, then you likely have either celiac disease and/or non-celiac gluten sensitivity, so you will need to decide how badly you want a formal diagnosis. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

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:

 

 

 

 

[KDeL]

That all makes sense thank you. 

 

I was within normal ranges - a little on the lower end. 

So, the NCGS would still show positive biopsy? 

[Scott Adams]

With NCGS there isn't villi damage, so it would not be detected via an endoscopy/biopsy. There also may not be high levels of tTG-IgA or tTG-IgG (sometimes they can be elevated, but in the normal range), but these blood tests may be slightly elevated or even high in people with NCGS: DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide), but, you can still have it even if all of these tests are normal.

[KDeL]

so much to it. 

the genetic testing will help if i don’t have it right? If theres no gene found then I definitely don’t have celiac? 

I guess genetic testing, plus ruling out h.pylori, plus gluten challenge will be a good way to confirm yes or no for celiac. 

[Scott Adams]

Since nearly 40% of the population have the genes for celiac disease, but only ~1% end up getting it, a genetic test will only tell you that it is possible that you could one day get celiac disease, it would not be able to tell whether you currently have it or not.

[trents]

Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge. 

Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.

[KDeL]

so all this info has been really helpful... thank you! I recently tested again and was IGA negative for celiac, but further testing says I am positive for one of the variants that is associated with celiac.  (HLA DQ8) also says value 1 and 3 for HLA DQA1, but idk what that means.

Anyway, now they are suggesting repeat scope.

sometimes gluten makes me super sick and sometimes I can handle it fine. last night I had bagel and woke up with stomach ache...

 

so Idk. the mystery continues... just dont' want to be eating and damaging my insides for years without knowing it.

-K

 

[trents]

Keep us posted about the scoping results. Make sure before the scoping you ask them to take several samples from both the duodenum and the duodenum bulb. Damage can be patchy and is sometimes missed if insufficient sampling is done during the biopsying. 

[KDeL]

oh wow that's so interesting! if I do re-scope, I will try to eat gluten more as well. when I do its super light. so maybe trying to keep that consistent for a while then the scope. plus i want to still do the genetic testing to rule it out. that would be so easy if that is negative then I for sure don't have it.

 

[trents]

But you have already had the genetic testing done and you have results. You have one main celiac gene out of two main celiac genes. You have  the HL-DQ8 gene. So, you do have the potential for developing celiac disease.

Edited March 21 by trents