My Gluten-Free Journey: Is it Celiac Disease or a Gluten Intolerance?
Life is a journey, not a destination. Do you remember that famous saying from Ralph Waldo Emerson? Funny enough, I find that phrase perfectly encapsulates my journey over the past few years with gluten.
You see, a few years back, I started experiencing inflammatory symptoms I hadn’t before. While I’ve always had autoimmune health issues and known intolerances to dairy and citrus, I never felt any off-putting GI symptoms after eating foods with gluten. But when I started experiencing eczema-like flares on my elbows as well as nervous system symptoms and achy joints, I knew something else was likely at play.
Since then, I’ve been working to figure out what’s going on inside my body—more specifically, in my small intestine—because eating gluten triggers an immune response in your small intestine if you have celiac disease.
While some celiac disease symptoms are black and white (i.e. major GI issues), others are trickier to pinpoint because they vary greatly in severity and look different in adults versus children.
Celiac disease symptoms in adults
Digestive symptoms can include constipation, nausea, vomiting, abdominal pain, diarrhea, fatigue, bloating and gas, and weight loss.
But did you know more than half of adults with celiac disease have symptoms that are unrelated to the gut/digestive system? That’s when I really began wondering what was going on inside my body…
Non-GI-related symptoms can include joint pain, increased infections, anemia, loss of bone density, headaches and fatigue, mouth ulcers, itchy and blistery skin rashes, and/or nervous system issues (i.e. cognitive impairment, numbness and tingling in the hands and feet, and balance problems).
Celiac disease symptoms in kids
Kids with celiac disease are more likely than adults to have digestive issues. Common symptoms include poor weight gain, gas, constipation, diarrhea, nausea, vomiting, a swollen abdomen, and pale, foul-smelling stools.
So now what…?
Like many others, I first turned to testing in hopes of finding answers. You see, simply eliminating gluten from my diet didn’t prove to be life-changing (although, I was hoping for a more definitive answer!). This is when my journey really began.
How is celiac disease diagnosed or ruled out?
Often times your doctor will recommend at least a couple blood tests to diagnose or rule out celiac disease. The first and most common is a Tissue Transglutaminase Antibodies (tTG-IgA) test, which looks for specific antibodies in your blood. This was where my doctor started with me.
It’s important to note you MUST be on a gluten-containing diet at the time of testing, as eliminating it from your diet may make the results of your test appear normal. For example, my doctor recommended eating the equivalent of two pieces of gluten-containing bread per day for at least two weeks leading up to the blood test.
My labs initially came back normal, so I thought that meant I could rule out celiac disease. But I later learned up to 10 to 15% of people will experience a “false-negative” test result, meaning there’s a chance they might actually have celiac disease if the test came back negative! Since I experienced so many inflammatory symptoms, I decided to mostly maintain a GF lifestyle to avoid foods that may exacerbate symptoms.
A couple of years later, after meeting with a GI specialist, she recommended I have celiac genetic testing done. The genetic blood test looks for human leukocyte antigens HLA-DQ2 and HLA-DQ8. If these are absent, you can likely rule out celiac disease. But if they are present, there’s a chance you do have celiac disease. Unfortunately, for me, they were present. As a next step, it was recommended I maintain a gluten-containing diet for several weeks (welcome back cinnamon rolls and pizza!), then have an upper endoscopy and intestinal biopsy performed to see if any damage occurred due to celiac disease in my small intestine. Learn more about this here.
There are a series of other available tests your doctor may request as well, depending on the tTG-IgA test results and your doctor’s methodology.
After the endoscopy
First, can I say the procedure wasn’t bad at all?! I was a little groggy afterward and, if we’re being honest, a little gassy. 😜 Lots of air enters your body during the procedure, but otherwise, I was mostly back to normal by that evening aside from a little cramping (likely due to the biopsies).
My doctor asked that I repeat some of the labs I had done months before to see if my baseline results had changed.
Overall, it was a mixed bag of results to decipher. While my scope showed my insides looked healthy, my biopsy revealed mild inflammation that is non-specific but can be associated with celiac disease. However, all my blood markers came back negative. The overall determination is I do NOT have celiac disease, but I do have an intolerance and need to continue to avoid gluten.
WHEW! That was quite the rollercoaster to end up where I started, but I’m glad I followed my gut (pun intended 😉) and dug in further. Have you experienced a similar path to determine if you have celiac disease? We’d love to hear about your experience!
— Meg and the Amulet Team
This piece was written by the Amulet team and reviewed by Amulet advisors Dr. John Lee and Dr. Jordan Scott. Dr. John Lee is the Clinical Director of the Food Allergy Program at Boston Children’s Hospital. Dr. Lee is widely recognized for his work in food allergy and his commitment to patient health. Dr. Scott is an allergist/immunologist and operates several private allergy clinics throughout the Boston area. He is on the board of overseers at Boston Children’s Hospital, and the past President of the Massachusetts Allergy and Asthma Society.