This post, Testing for Celiac Disease Without Going to Your Doctor, is sponsored by imaware(TM). imaware makes celiac disease blood tests that you can take in the comfort of your own home. This article is for informational and entertainment purposes only and should not replace medical advice from your physician; rather it should enhance such discussions with a trusted healthcare professional. All information shared is well-researched and any opinions expressed are my own. Please see my disclosures and disclaimers for more information.
Testing for celiac disease is a topic that creates a lot of confusion among the newly diagnosed. People want to understand the testing process, its accuracy, what all the “alphabet soup” celiac disease tests really mean, and finally, what it takes to get an official diagnosis. While testing for celiac disease isn’t always a clear cut process, there is a method to the madness.
Unfortunately, celiac disease is one of the most underdiagnosed diseases in the world. According to the Celiac Disease Center at the University of Chicago, celiac disease affects roughly one percent of the U.S. population or approximately three million people. However, 40-60 percent of those living with celiac disease don’t know they have the disorder (and remain undiagnosed).
Another startling statistic is that the average length of time it takes for someone to be diagnosed with celiac disease in the U.S. is four years. Such a delay means people are suffering longer, and during this time they have an increased risk of developing other diseases, including cancer.
Diagnosis is often delayed due to lack of awareness of the disorder and its symptoms. Traditionally, doctors viewed celiac disease as a disorder of the digestive system, with classic symptoms of extreme bloating and nutritional deficiencies. However, today, researchers know that celiac disease symptoms go well beyond the digestive tract and often include migraines, joint and muscular pain, skin conditions, infertility, and brain and/or mental disorders, to name a few.
As awareness for celiac disease grows, as does our understanding of how celiac disease can manifest itself in the human body, it’s possible more people will seek out celiac disease testing on their own. I love that we live in a time where information is readily available (the democratization of health information is a blessing for us all!) and that we can crowdsource information to help us better understand why we feel a certain way and what might be the root cause.
Making Sense of It All
Chances are if you’re reading this article, you have a lot of questions about whether or not you have celiac disease, what your test results mean, and how you can make sense of it all. I will attempt to help you, and I strongly encourage you to seek a trusted medical professional to help you too.
In this article, I will attempt to answer all your questions, as best as I can. You might be asking:
- How do I get tested for celiac disease?
- What tests do I need?
- What are blood tests looking for?
- What do the blood test results mean?
- Is the blood test accurate?
- Do I need to get a small intestine biopsy (via endoscopy) to verify the accuracy of the blood test?
- What are doctors looking for when they do the biopsy?
- Do I need to monitor my progress once diagnosed?
- Should I get my family tested if my test is positive?
You have a lot of questions, and I have some answers for you (or at least can shed a light on some of these topics).
Testing for Celiac Disease
Getting tested for celiac disease is easy, at least at first. A simple blood test is your first course of action. You can obtain a blood test in one of two ways:
(1) Your Doctor: Most doctors will issue the test if they suspect celiac disease. You must obviously pay your doctor’s fees (or co-pay) and your insurance should cover the test (if you have insurance). I have heard of some doctors pushing back on doing the test (and I can only speculate way), so if you feel your doctor isn’t taking your request seriously, you have another option.
(2) imaware At-Home Celiac Disease Test: You can skip the doctor’s office altogether and test yourself for celiac disease at home. Don’t you just love that we live in a day of age where you can take your health matters into your own hands? It’s so empowering! The at-home celiac disease test is called imaware(TM) and it launched just a few months ago (Winter 2019).
Here’s how imaware works:
(1) imaware sends you a test via mail (you purchase and register your test online).
(2) Read all the instructions carefully and watch the video online to become familiar with what you need to do.
(3) Wash your hands and swab your finger with the alcohol pad provided.
(4) Prick your finger with the provided lancet.
(5) Collect at least five drops of blood in the small vial. Seal the vial, place it in the zip-top bag, and put it back into the box it came in.
(6) Return the package using the return label provided. In just a few days, imaware will email you the results. All results are validated and interpreted by a physician. They are as accurate as any doctor-ordered tests.
What imaware is looking for:
The imaware celiac disease blood test is testing for tissue transglutaminase (tTG) antibodies in your blood. tTG is an enzyme found in the intestine and is currently the gold standard screening test. When someone has celiac disease (and is consuming gluten), the immune system produces antibodies that attack tTG. There are two types of tTG antibodies that are used to screen for celiac disease – tTG-IgA and tTG-IgG.
tTG-IgA antibodies are found in the GI tract and are positive in 95 percent of people with celiac disease (you must be consuming gluten in order for the test to detect tTG antibodies). It is highly specific in testing for celiac disease. Although rare, about 1-3 percent of the U.S. population is IgA deficient and therefore cannot make IgA antibodies. That’s why celiac disease screening also looks for IgG antibodies, which are similar antibodies found throughout the body, not just in the GI tract.
Additionally, celiac disease testing can include DGP-IgA and DGP-IgG biomarkers. DGP stands for deaminated gliadin peptide and is used to test for celiac disease in people who test negative for tTG antibodies. Gliadin is a protein found in gluten and it can be found in the body before tTG antibodies are present. DGP tests may someday aid in the early detection of celiac disease, especially in celiac disease testing in children.
What Does a Positive Test Mean?
When one or more of the tests come back positive for celiac disease, it’s important to evaluate next steps with your doctor. Only a doctor can officially “diagnose” you with celiac disease, so your results must be reviewed and discussed with your doctor in order to decide next steps. (If all the tests come back negative, but you still have symptoms inline with celiac disease, please talk to your doctor about additional diagnostic testing for celiac disease or other disorders.)
The best way to verify the accuracy of your blood tests is via a small intestine biopsy known as an “endoscopy,” where a doctor takes a look inside your body via a scope inserted in your mouth. Don’t worry, you’re under general anesthesia and won’t remember a thing!
The doctor is looking for total villous atrophy. The villi are the finger-like follicles surrounding the small intestine and are responsible for absorbing and distributing nutrients throughout your body. In people with celiac disease, the villi are damaged and flattened. The doctor also will take several biopsies from various parts of your small intestine to submit for further lab testing.
Once you’re certain you have celiac disease (positive blood test verified by endoscopy), you’ll need to learn the ins and outs of the gluten-free diet. On the positive side of things, you won’t be suffering from the symptoms that led you to think you had celiac disease in the first place – amen! On the flip side, your entire life will change. Eating out and shopping at the grocery store will be more difficult. (Please read my Beginner’s Guide to Being Gluten-Free for getting started on your gluten-free diet.)
At this time, you’ll also want to consider having all first-degree relatives tested for celiac disease. According to imaware, first-degree family members are 15 times more like to have celiac disease than the general population, with the highest incidence of celiac disease prevalence in siblings of someone previously diagnosed with the disorder.
Testing the entire family is easy to do with the imaware at-home celiac disease screening tests. It can be very costly to take time off of work to shlep everyone to the doctor’s office and then pay insurance co-pays and additional fees. It’s much easier to order the test online and test everyone at home – mom and dad, kids and siblings. (imaware can only test adults 18 years and up at this time.)
Celiac Disease Monitoring
Post diagnosis, you’ll want to make sure your body is responding to the gluten-free diet (and hopefully other dietary and lifestyle changes you’re making – read more about how I put my celiac disease symptoms into remission).
Unfortunately, imaware says that 73 percent of patients do not follow up with their physician post-diagnosis. I am one of those people. I felt like my doctor didn’t really “get” celiac disease, and without a magical pill or procedure, she didn’t know what to do with me. I took matters into my own hands and learned everything on my own… but I would have LOVED to have had a celiac disease monitoring test for that first year to have tracked my progress and evaluate, in real time, if my gluten-free diet was effective. And, of course, I would have loved to have had the chance to validate my hard work along the way.
imaware offers at-home celiac disease monitoring tests to help you track your body’s response to these changes over time. The tests are shipped to your house in two, four or six month intervals depending on the frequency you choose. You take the test and track your results online. You can then discuss your progress (or lack of progress) with your trusted health care team.
I’ll be talking more about the celiac disease monitoring test in a future blog post, so more information to come on the importance of monitoring post-diagnosis.
A Bit More About imaware
You might be wondering if taking a celiac disease test at home is an accurate way to test for something as serious as celiac disease. I assure you, imaware is the real deal.
I’ve spent several hours speaking with one of the founders of the company, Jani Tuomi, and he and his team have done a lot of work to bring a new level of transparency and empowerment to the celiac disease community.
Tuomi and his team designed the celiac disease test alongside world-class celiac disease doctors, Dr. Guandalini, the Medical Director of the University of Chicago Celiac Disease Center, and Dr. Schuppan, who discovered the tTG biomarker used in identifying celiac disease. The imaware team also has forged partnerships with Beyond Celiac and the Society for the Study of Celiac Disease. Tuomi says this is in an effort to bring expanded educational resources and access and information about celiac disease screening to the larger population and to dramatically reduce the number of undiagnosed patients.
I had the opportunity to take one of the imaware celiac disease tests so I could see how the process worked. My test results came back negative (as expected) for all celiac disease biomarkers, which means my gluten-free diet has been working. I’ve been gluten-free for nearly seven years, so it makes sense that celiac disease is not detectable. It doesn’t mean I don’t have celiac disease nor am I cured; it just means my symptoms are in remission and properly managed by the elimination of gluten. Should I eat gluten again (never!), the tests would all come back positive.
You can purchase your own celiac disease at-home test on the imaware.health website for $99 – a small price to pay for peace of mind and control over your own [health] destiny.
PS – Use HSA/FSA funds to purchase the test. It’s covered!
PPS – Please share (in the comments) your celiac disease testing process and what worked, what didn’t. Together we can help others!