Getting a celiac disease diagnosis is often a trying, challenging and frustrating experience for people who suspect they might have the autoimmune disease.
If you think you have celiac disease, you’ll want to read this post right away to find out the best path to take towards getting an official celiac disease diagnosis. There is no time to waste. Your health is too valuable and the quicker you start healing yourself, the better! Don’t ignore your symptoms and trust your gut, literally!
It is said that 80 percent of people living with celiac disease aren’t even diagnosed yet.80 percent of people living with celiac disease aren't even diagnosed yet. Click To Tweet
This is insane! My goal with this blog (and blog post) is to bring attention to this awful disease and put people on a path to finding out what ails them and then healing themselves through a gluten free – and healthy – diet.
If you check off many of these celiac symptoms, then you need to find out whether or not you have celiac disease or something else. Never forget that you are your biggest and best health advocate!
The Path to a celiac disease diagnosis can be a difficult, winding path for many. As I see it, there are five key steps to getting a celiac disease diagnosis, Whatever you do don’t stop eating gluten until you get your diagnosis – you need to have gluten present in your body for any of these tests to be accurate.
Know the Signs and Symptoms of Celiac Disease
If you have any of the celiac disease symptoms, you may have celiac disease. Remember, celiac disease manifests itself in your gut and that can create great digestive discomfort, nervous system disorders (depression, anxiety, migraines), skin rashes, vitamin deficiencies, fatigue, infertility and more. Discuss all your symptoms with your doctor – this is your first step on your path to an official celiac disease diagnosis.
Get a Blood Test
More likely than not, if you exhibit one or more symptoms of celiac disease, your doctor will recommend doing a blood test to check for celiac disease antibodies. The most commonly used test is the tTG-IgA test. Remember, you must NOT be on a gluten free diet in order to get accurate results.
I am looking at my blood test results at the moment and see my doctor tested me for a variety of things. I actually had no idea at the time that she was testing me for celiac disease (she never mentioned it and I hadn’t heard of celiac disease outside of Elisabeth Hasselbeck mentioning it on The View!).
I tested positive for Endomysial Antibodies IgA class. This means antibodies to endomysium, the thin connective tissue layer that covers individual muscle fibers, was detected in my blood. I also was tested for Transglutaminase (TG) IgA and my value was 10. Normal values are 0-3. Anything greater than 10 is positive. The endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy, or as it is commonly called, “celiac disease.”
Ironically enough, my blood test came back positive for a variety of food allergies – wheat, corn and peanut allergies – too. It turns out that I not only have a celiac disease diagnosis, but also I am allergic to wheat. Go figure!
Presence of Genetic Markers in Celiac Disease Diagnosis
There are genetic tests (specifically, a genetic test swab) that a doctor can do to see if you’re a candidate for an intestinal biopsy. Genetic tests are best suited for you if you are a first degree relative of someone with celiac disease (parent, child, or sibling).
On the National Institute for Diabetes and Digestive and Kidney Diseases website, it says, “Most people with celiac disease have gene pairs that encode for at least one of the human leukocyte antigen (HLA) gene variants, or alleles, designated HLA-DQ2—found in 95 percent of people with the disease—and HLA-DQ8.”
You can read more about genetic markers on the NIDDK website. It’s a bit technical for me, but it is, nonetheless, a path to a celiac disease diagnosis. A genetic test swab requires that you are eating gluten at the time of the test and even several months prior (so if you want to get tested, do not stop eating gluten!). It does not test for Non-Celiac Gluten Sensitivity.
Look for Intestinal Damage
Should you have signs and symptoms of celiac disease, and/or have a positive blood test, and/or have the presence of genetic markers, your doctor will suggest you undergo an endoscopy procedure to view and biopsy your small intestine. Through both a visual examination and biopsy, you should get a better indication if will get a celiac disease diagnosis. For me, my doctor took six biopsies from different sections of the small intestine. Be sure your doctor takes samples from different sections as celiac disease can hide from an initial vantage point.
My doctor said my stomach was normal, as was my esophagus, but he could see “mild scalloping and fissuring” that is consistent with a celiac disease diagnosis. I believe my symptoms were just starting to bubble when I caught it; I know many people suffer for years and the average time to diagnosis can be six or more years!
I waited four months before getting the endoscopy, mainly because it took awhile for me to find a good GI doctor and then to get on his calendar for both a consultation and endoscopy. I was diagnosed with celiac disease through a blood test on April 17, 2012, and I did the endoscopy to confirm the celiac disease diagnosis on August 22, 2012. My doctor was worried that he might not be able to detect celiac disease since I had been on a gluten-free diet for four months already… but for better or worse, both the visual examination and biopsies were positive for celiac disease. My gut was far from healed even four months into this gluten-free diet!The average time to get a celiac disease diagnosis can be six or more years!Click To Tweet
If all tests come back inconclusive for celiac disease, another path to a celiac disease diagnosis is by following a strict gluten-free diet (under a doctor’s approval and supervision) and seeing if all your symptoms resolve. While it may mean you have a non-celiac gluten sensitivity or gluten intolerance, it can also mean you have undiagnosed celiac disease. As I mentioned prior, celiac disease is a hidden disease and therefore quite difficult to diagnose for many people. If you feel better after following a strict gluten-free diet for three or more months, congratulations, you have taken matters into your own hands, advocated for your health, and now follow a diet that heals vs. hurts you.
Editor’s Note: Some of this information is from a lecture by Rachel Begun, MS, RD (and fellow celiac) via the Institute for Integrative Nutrition, where I studied holistic nutrition and became a certified nutrition and health coach.
None of the information in this post should be construed as medical advice. Always discuss your symptoms as well as your path to celiac disease diagnosis with your doctor.
Remember, there is no one-size-fits-all approach to getting diagnosed! Just remember that many doctors may not know or understand celiac disease, so come prepared to share what you know to ensure you get the proper tests. As always, YOU are your biggest and best health advocate.
Read my celiac disease diagnosis story here.