Standardizing Celiac Disease Diagnostics

I wasn’t diagnosed until age 53. It wasn’t for lack of trying (on my part) to get diagnosed earlier, but for me the “gold standard” blood test came back negative twice. At least that’s what the ordering doctors told me. But later when I went to a Naturopath, he ordered the blood test again, and said it wasn’t negative but a weak positive. Further testing revealed that I do have Celiac Disease, and finally going gluten free made a huge difference in my health. My symptoms were very obvious & I feel that doctors often give up too easily when seeking this diagnosis. Being diagnosed that late in life meant that not all of the damage to my small intestine was recoverable, and as such I require lots of supplements & will need them for the rest of my life. This disorder is far more common than most doctors know, and they absolutely need to look further in cases where initial testing may be negative in their estimation, but the patient’s symptoms clearly suggest otherwise.

It's great that you finally figured it out. Unfortunately most people who have it are still undiagnosed. 

13 minutes ago, Scott Adams said:

It's great that you finally figured it out. Unfortunately most people who have it are still undiagnosed. 

Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score. Some people go gluten-free before their endoscopy because their doctors don't follow protocol and tell them to keep eating lots of gluten daily for at least two weeks before the procedure--this can create false-negative results.

Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis.

The same is true for blood test results. We've heard over and over in this forum from people who were not told to eat at least two slices of bread daily for 6-8 weeks before a blood test for celiac disease--which is the standard protocol for the tests. Many people go gluten-free before their blood tests are taken, which can create false-negative results.

Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion. There is no "Weak Negative" category, for example. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!). 

Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease.

Unfortunately many people will continue to suffer and eat gluten due to these errors in performing or interpreting the tests for celiac disease. Some will find out about the majority here who fall into the non-celiac gluten sensitivity zone and go gluten-free and recover, but many will continue suffer needlessly. Consider yourself lucky if you've figured out that gluten is the source of your issues and you've gone gluten-free, because many people never figure it out.

If I had a dime for every doctor who told me I just had irritable bowel syndrome, I’d be a rich woman. I had started suspecting Celiac back in my 20’s, but my late husband was military so I was seeing military doctors. They wouldn’t even order the blood test, and just kept telling me it was only IBS.

Celiac is so much more common than many would believe. I wish doctors would come up to speed on just how common it is. They could save lots of years of unnecessary suffering for many people.

On 10/31/2023 at 2:03 PM, Scott Adams said:

Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA.

I was rather surprised to go back and look at my blood test results because none of them included a total IgA. But then, looking at the lab results from my original celiac disease diagnosis over 10 years ago, I see the reason for that. Part of the standard verbiage in that report says: "Between 2-3% of Celiac patients have selective IgA deficiency. If the tTG IgA result is negative but celiac disease is still suspected, total IgA should be measured to identify possible selective IgA deficiency and to rule out a false negative." In my particular case, my tTG IgA was high, so no total IgA was needed. This was verbiage spit out routinely, so really, the doctor didn't need to know this, since it's flagged for them right there on the report.

But, in any event, I'm now learning about IgA deficiency and how it's tied to a few conditions, a couple of which I suffer from like frequent sinus infections, and two Covid infections less than 5 months apart. For better or worse, my parents decided to remove my tonsils and adenoids when I was a child, so maybe that has something to do with some upper respiratory struggles, who knows.

My question is - given that over 10 years ago, I didn't have selective IgA deficiency, is it likely that I still don't? (My last celiac disease panel was about 6 years ago, and everything was normal. Total IgA was not run.)

Plumbago

I believe that IgA deficiency is genetic and won't change over a person's lifetime, so if you are IgA deficient you'll always be that way.