If you suspect gluten is a problem for you, it's important to find a good doctor and ask for the right tests.
No matter how dearly you love your pasta, baguettes, paninis, or cupcakes, if you suspect your body does not react well to gluten, it’s essential you find an open-minded gastroenterologist and get the proper tests to definitively confirm – or rule out – Celiac Disease.
The first step is to find a doctor that agrees you should be tested. This is shockingly harder than you’d imagine. There are still many gastroenterologists who dig in their heals and insist that, unless you’re a “textbook” case exhibiting the classic gastrointestinal symptoms of Celiac (diarrhea, cramping, bloating, flatulence, nausea, etc.), you don’t need to be tested. There are even doctors who refuse to test patients who have a close relative who was recently diagnosed!
Why this stubbornness? It’s a mystery, other than to say that medical professionals (like others) can be dismissive about things they don’t fully understand. Rather than admitting their limited knowledge, they’ll dig in their heels and insist you couldn’t possibly have Celiac. If this is your experience, find another doctor. Call around to find a gastroenterologist who is covered by your insurance plan and is open-minded enough to order what’s called a full Celiac panel.
It sounds complicated, but it’s really not…it’s a simple blood test, just like any other. Which makes it all the more confounding that so many medical professionals don’t order it for any and all of their patients complaining of chronic digestive (or other) health issues.
It’s important to ask for the full Celiac panel, which measures your immune system’s response to gluten in the food you eat. It consists of the following tests:
tTG-IgA or tissue transglutaminase-IgA
AGA-IgG or Antigliadin IgG
AGA-IgA or Antigliadin IGA
If your levels come back elevated, the “next step” – or gold standard – to confirm a diagnosis is an upper endoscopy with biopsy of the small intestine. This sounds worse than it is. It’s a fairly routine procedure where a small scope is routed down into your intestines to take a small sample of the inner lining of your intestines for analysis at a lab. For adults, this is done under light sedation. For very small children, general anesthesia is typically used to limit movement during the procedure. (Some experts now agree it’s okay to skip the general anesthesia and endoscopy/biopsy for small children if the full Celiac panel shows high levels of antibodies in the blood and if testing confirms they have one of the genes for Celiac.)
The most crucial bit of advice regarding testing for Celiac is this: DO NOT put yourself on a gluten-free diet BEFORE you are tested, as it can alter the test results and give you a false negative. If you suspect gluten is adversely affecting you, it is essential to get an accurate diagnosis, and you need to be eating gluten to do that. You don’t want a false negative test result. On the flip side, you certainly don’t want to “self diagnose,” adopting a gluten-free diet on your own if one isn’t needed.
If diagnosed, it’s also essential to have all direct family members tested (parents, children, siblings, grandparents, cousins). The disease is genetic and can skip a generation. Family members may or may not have it, but it’s important to be tested, because again, even an “asymptomatic” family member may end up with a positive diagnosis. The purpose of getting everyone tested isn’t to “assign blame,” of course, but rather to ensure the optimal health of all family members.
So what if your tests for Celiac Disease come back negative, but you still feel gluten is to blame for your compromised health? Read on to find out about other reasons to follow a gluten free diet…