May is Celiac Disease Awareness Month. To honor this important topic, I have partnered with Shelley Case, RD to give away a copy of her book, Gluten Free: The Definitive Resource Guide to one lucky winner.
In addition, I share the story of one of my favorite GI dietitians, Lori Welstead… her road to a celiac diagnosis.
When you suffer with digestive distress with little improvement year after year, does it make sense to re-visit the possible diagnosis of celiac disease?
I asked one of my kind and smart dietitian colleague to share her celiac diagnosis journey. You may be surprised to learn that diagnosing celiac may not always be so clear cut.
Lori Welstead, MS, RD, LDN, is a celiac disease expert dietitian that works at University of Chicago’s renown Celiac Disease Center. She has been a GI dietitian since 2004. She was diagnosed with IBS just prior to taking on her role at U. of Chicago. Her IBS symptoms settled down between 2006-2014, but in 2015, she noted a resurgence of GI symptoms and other symptoms. During a University of Chicago Celiac Education Day event in 2015, which offered celiac blood screening tests, Lori took decided to undertake the celiac screening blood test again.
Lori shares her story, “Just 18 months prior to the celiac education event, I tested negative when my celiac antibodies were drawn. But since that time, I had not been feeling well. During that period, I had been on three international trips (two to Italy in which I was quite sick), and had two devastating miscarriages plus a hernia surgery. It had been a whirlwind. My symptoms included: fatigue, borderline anemia, miscarriages, eczema and anxiety. On November 9th, 2015, I received a life-changing call from Dr. Guandalini, one of University of Chicago’s Gastroenterologists. He told me my celiac serologies from our screening came back positive. I quickly scheduled an endoscopy and just two weeks later got the definitive diagnosis of celiac disease. As you may imagine, the ten days between the bloodwork and the endoscopy included many questionable ‘last meals’ and I got in my favorite foods before confirming I had celiac disease and would now be gluten-free for life. After so many years of advising patients about the gluten-free diet and researching and writing about it, I would now be experiencing it and living with it, just as they do every day.”
Lori underwent an endoscopy to confirm the celiac diagnosis (the celiac antibody blood test alone is not enough evidence), a week before Thanksgiving. “The idea of having celiac disease brought up emotions surrounding food and family. Despite my expertise in educating and counseling patients and professionals on the gluten-free diet, it was still a challenge to find a balance and minimize anxiety in social situations.”
Patients often undergo a bit of a grieving process when diagnosed with celiac. Grieving the loss of enjoying a crusty baguette, a favorite pizza, or the simple ease of dining out. Lori continues, “There were times I would cry just thinking about eating out or eating at a family member’s house when I was initially diagnosed. Typically, it can take months to a year to fully adapt to the gluten-free diet. There are social, emotional and physical changes that affect the choices of someone with celiac disease. Being mindful, practicing patience, kindness and understanding with oneself during rough times can help one adapt to the emotional rollercoaster and lead a happier life.”
One of Lori’s key messages for healing herself and others, “Give yourself some self-compassion. Giving yourself the same loving kindness and care we would give a friend or family member when they struggle, fail or make mistakes.”
Lori’s wise words, “Trust your intuition and if you are experiencing symptoms, get tested for celiac disease.”
The symptoms of celiac disease truly run the gamut–from having zero symptoms to fatigue, osteoporosis, depression, GI distress, GERD, weight gain or loss, anemia, brain fog, small intestinal bacterial overgrowth, infertility or miscarriages, to name a few. If you have a biological family member with celiac disease, this ups your risk.
It is possible to have a negative celiac serology test one year and a positive one the next. Discuss if re-screening for celiac disease makes sense for you with your gastroenterologist or primary care doctor.
To learn more about how to properly test for celiac disease, check out my post here.
Big thanks to Lori Welstead for sharing her story! xx
And If you are interested in a chance to win, Shelley Case’s book, simply leave a comment sharing your favorite gluten free product! One randomly selected winner will be chosen May 30, 2019.