How to get tested (right) for Celiac Disease

You're not feeling well. You wonder if your're a hypochondriac After all you've talked to "Dr Google" a hundred times, looking for possibilities and answers. Or you've had the friend whose told you have the same symptoms that a friend has had.

Or maybe have a family member who has been diagnosed, and they're urging you to get checked out.

The idea of having an autoimmune disease is distressing enough. The thought of taking the steps to found out for sure seem.... daunting. It's not a surprise. There are a lot of competing voices out there.

Take a deep breath. I'll share a bit of my own journey, facts from trustworthy organizations, and try to help you figure out how to best navigate your Celiac concerns. 

Veggie burger on Chebe bun
Don't step away from that burger just yet!
I've heard so many heart breaking stories of people who've stopped eating gluten prior to getting tested. Maybe they did it on their own because they wanted to feel better. Maybe a doctor told them to stop prior to testing. DON'T DO IT! All of the accurate testing methods we have to date require the consumption of gluten.

Maybe you're thinking, "If I feel better eating gluten-free, what's the difference?" There's a lot of difference, according to the University of Chicago Celiac Disease Center. There are three medical issues linked to wheat (wheat allergy, Celiac Disease, and Non-Celiac Gluten Sensitivity) that are distinctly different and require different treatments. Celiac Disease has many associated health issues, such as thyroid disease, osteoporosis, and other intestinal issues. It is important to have an accurate diagnosis to make sure you are getting proper follow-up care.
In addition, Crohn's Disease and Celiac Disease have many overlapping symptoms, and again require different treatments. (I actually know of a young man who was misdiagnosed for years with Celiac Disease when in fact he had Crohn's. Not fun.) There are over 300 symptoms that are associated with Celiac Disease, which can make it difficult to diagnose. You owe it to yourself to know for certain!

2. Ask Your Doctor to Run Some Blood Tests
A. Celiac panel - There have been lab tests used throughout the years to test for Celiac Disease. As medical science gets better, so do the tests. As of today, the best test is "tTg-IgA". This is short for Tissue Transglutaminase Antibodies. It is highly accurate and is positive in 98% of those with Celiac Disease. It is also low in what we call "false positives." This means that it will accurately come back negative in 95% of those who do NOT have Celiac Disease. "There is a risk of a false positive especially for people with associated autoimmune disorders like Type 1 diabetes, chronic liver disease, Hashimoto’s thyroiditis, psoriatic or rheumatoid arthritis and heart failure, who do not have celiac disease."
Because there is some wiggle room, doctors usually run these additional blood antibody tests-
EMA, total serum IgA, and DGP. Also please know, that as great as science is, it is still possible for lab tests to come back with a false negative. If you still feel awful, and especially if you have a family history of Celiac Disease, continue to consult with your doctor. Share this guide from the Celiac Disease Foundation if they seem unsure of what tests to run.

Celiac Disease Screening at Lansing Gluten Free Fair
Free Celiac Disease Blood Antibody Screening at the Lansing Gluten Free Fair
Photo Courtesy of Vernon Coleman

B. DNA test- Science has made great advancements in mapping the human genome. Scientists have now been able to decipher where the sequences of Celiac Disease reside on our genetic makeup. At this point, genetic testing can only be used to rule out Celiac Disease. Doctors state that if you do not test positive for HLA DQ-2 or HLA DQ-8, you cannot have Celiac Disease. Unfortunately, simply having those genes don't mean that you DO have Celiac Disease. A large portion of the population has those genes, but never develop the disease. We look forward to the day when genetic testing can be more specific and hopefully allow us a way to test for Celiac Disease without the ingestion of gluten.

3. Meet with a Knowledgeable Gastroenterologist for an Upper Endoscopy

Margaret Clegg getting ready for her endoscopy 
This is me getting ready for a follow-up endoscopy with my new gastroenterologist. I was diagnosed over a decade ago, by a good doctor. I have a family history of Celiac Disease, and my pathology was pretty definitive. Fast forward to now. I had seen that same gastro ONCE. He never scheduled follow-up antibody tests to make sure my body was healing. He never checked for osteoporosis, thyroid or other issues. I moved 60 miles away and decided it was time for a change.

My endoscopy was pretty easy. I didn't need to drink any junk (that's for a colonoscopy) and I had to not eat anything for about 10 hours prior to my procedure. Once I was in the procedure room, they were finished in less than 15 minutes. And I was under complete anesthesia the whole time. I hear stories by some that weren't under anesthesia, either because they didn't want to be or their doctor was foolish. During an endoscopy, they stick a small tube with a camera in it to visibly inspect your esophagus, stomach and the duodenum (top part of the intestines.) They also take small bits of tissue, called a biopsy. Tiny, tiny bits of tissue. Small, barely there bits that go under a microscope. These bits are tested and inspected for damaged villi, which are responsible for absorbing our nutrients.

Make sure that your GI is taking at least 6 samples from various places in the duodenum. One sample is not enough to make a definitive diagnosis. Celiac Disease can affect one patch of the intestines and not another. More samples is always better. This medical standard is better explained in the University of Chicago Celiac Disease Center's explanation of an endoscopsic biopsy.

The Celiac Disease Foundation has a provider directory on their website, if you're looking for a knowledgeable GI. And if you live in the greater Flint area, I highly suggest Dr. Salimi. He's an expert and totally charming.

There may be a day in the future when we will  have less invasive ways to diagnose Celiac Disease. But until then, I will personally still advocate for endoscopies. Especially since on my follow-up endoscopy they discovered a hiatal hernia and are testing for other issues.

4. Meet with an Education Dietitian and Others who are Knowledgeable about the Diet 

So you've been poked, prodded, tested and inspected. And the results come back that you definitely have Celiac Disease. Now what on earth do you do? It's not as simple as "just take gluten out of your diet." I mean, that's what we need to do, but it's a big learning process. What is gluten? Where does it hide? What other nutritional deficiencies should I be concerned about? Can I ever eat pizza again?

This is where a good dietitian who is versed in Celiac Disease is a good place to start. I would again use the CDF provider directory to try to find one. Remember, dietitians have to learn A LOT in school, and some may not be well versed in Celiac Disease, This is why I would also suggest finding a local Celiac Disease support group. Many groups have a dietitian who advise their group as well. They are also the people who have been navigating and living with this disease everyday They are the ones who have walked in the shoes that you now find yourself in. They know the emotional side of Celiac Disease. Food is such an integral part of our society, of family, of community. And now your relationship to it, and other people now has to change dramatically. They're here to help.

A group photo of the Mid Michigan Celiac Disease Support Group
My adopted Celiac Disease family
There are lots of good online resources for those of us who are newly diagnosed. The Celiac Support Association, the Celiac Disease Foundation, and Beyond Celiac are all organizations devoted to helping those with Celiac Disease. They all excel at certain aspects of Celiac Disease management. The University of Chicago Celiac Disease Center is an excellent resource as well. Their "FAQ" section is the biggest searchable question database I've ever seen. They offer a free care package for those who are newly diagnosed, and were done so by biopsy. The offer a free E-book to help you "Jump Start" your gluten-free lifestyle.

Hopefully I've given you some information that's been helpful. That's helped clear up confusion you may have. I will state clearly that I'm not a doctor, dietitian, nurse or "certified" medical professional. I am a Celiac Disease support group chair and an advocate. I'm a fellow "gluten free gal." I'm walking this journey with you, every step if the way.