By Alice Bast, CEO, Beyond Celiac
There are many roads that ultimately lead to celiac disease testing and diagnosis, some much worse than others. As the CEO of Beyond Celiac and as a person with celiac disease myself, I hear lots of diagnosis stories – some of them harrowing.
For years I’ve worked with Beckee Moreland, the director of our GREAT Kitchens foodservice training program. She’s a vibrant, energetic soul. That’s why her journey with celiac disease is so surprising to those hearing her story for the first time. Like many of us, she had years of struggle. Celiac disease brought her to the brink of death – literally — and an 11th hour diagnosis brought her back.
All her life she’d experienced unexplained symptoms– migraines, stomach issues, bouts of unexpected “flu,” cold sores, chronic sinusitis, severe mood swings. She was always tired – two-hour naps were a daily routine for her. And after college, Beckee experienced an abrupt and drastic decline in weight.
Because of these symptoms, she’d actually been tested for celiac disease while in her 20s. A gastroenterologist did an endoscopy but did not biopsy the tissue to see if there was damage to the lining of the small intestine. Beckee continued on as best as she could, but her health still declined. By the time she married her husband Dave in 1990, she was quite thin.
In 1992 at the age of 34, she and her husband had a son. Cole was a healthy 6-pound baby. Beckee, however, didn’t fare well. Almost immediately after giving birth, her weight plummeted. She had difficulty breastfeeding. She had diarrhea, night sweats, bone pain. She could barely get up and down the stairs. She was too weak to turn the shower on and off. Her OB/GYN told her that whatever was wrong wasn’t a function of the pregnancy. She was sent to a GI specialist, who hospitalized her that same day.
In the hospital, Beckee was so dehydrated that the technicians couldn’t find a vein to draw blood. The nurses weighed her every day, but she could barely stand on the scale. She was on a liquid diet (including bouillon that contains gluten) and showing no improvement. On a Friday, four days after being admitted, doctors did a biopsy of her small intestine. She’d have to wait until Monday for the results. The nurse that Beckee bid goodbye to on Friday afternoon later said she was surprised to see Beckee still alive on Monday. She’d honestly thought that Beckee’s health was deteriorating so fast that she wouldn’t make it through the weekend.
Finally, finally, the doctor broke the news. Beckee recalls he said, “You have a very rare condition – celiac disease.” At the time, it was believed that celiac disease prevalence was 1 in 2,500. Her husband Dave joked, “I always knew you were special, but I didn’t know you were that special.”
The registered dietitian at the hospital was unfamiliar with the treatment for celiac disease – a completely gluten-free diet – but she did her homework, went out, bought food and cooked it for Beckee so that she’d have something to eat in the hospital.
Beckee’s health was restored almost immediately. “I felt normal for the first time, which was a wonderful thing, especially since I had a brand-new baby.” Her migraines were gone. She gained weight, had unrecognizable energy, and became able to breastfeed with no problem. The stomach problems and nausea vanished.
These days, Beckee is focused on feeding others. She’s a co-owner of a restaurant and also leads the Beyond Celiac GREAT Kitchens Gluten-Free Training Program, which helps those with celiac disease eat without fear and live their lives to the fullest.
Beckee says that she does sometimes wonder how life would have been different with an earlier diagnosis, but that, in the end, she wouldn’t have it any other way. It’s her experience that has made her who she is today, and that fuels the passion behind her work at Beyond Celiac.
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Alice Bast is the CEO of Beyond Celiac, formerly known as the National Foundation for Celiac Awareness. Beyond Celiac is a non-profit that advances widespread understanding of celiac disease as a serious genetic autoimmune disease and works to secure early diagnosis and effective management. Beyond Celiac empowers the community to live life to the fullest and serves as a leading and trusted resource that inspires hope, accelerates innovation, and forges pathways to a cure.