Family Story: Karen Broussard, Gluten Free Travel Site
Celiac Disease: Our Family’s Story – And Why Everyone Needs to Become an Advocate for the Millions of Undiagnosed Children and Adults
I’ve never really written in detail about my son’s initial diagnosis with celiac disease, which happened just before he turned two – over 8 years ago. It feels like a lifetime ago, really. So it seemed appropriate, during this month of Celiac Awareness, to share a bit about our story in the hopes that other people suffering with unexplained health issues will seek out a knowledgeable and open-minded gastroenterologist to help them confirm – or rule out – celiac disease.
Chances are, within your immediate network of people you interact with on a regular basis – family, friends, neighbors, co-workers – there are at least a couple people with undiagnosed celiac disease. Open that up to your broader network of “virtual” friends, acquaintances, and contacts and you likely know dozens. And you have the power to help these people – whether they have traditional or non-traditional symptoms – to change their lives for the better.
Our family’s story began in March 2005. That month, our older son Steven had a nasty bout of the rotavirus, which was “going around” the neighborhood at the time. After about two weeks, he was totally back to normal, but then our younger son Ryan got it. After the same amount of time – about two weeks – he was not back to normal. While the digestive issues that come with any intestinal bug seemed to improve, his limbs were emaciated, and he had a distended stomach. I almost broke into tears while bathing him one night, because it dawned on me that he looked like a malnourished child in a third world country. Turns out, our 24 pound son had lost three pounds.
What was wrong? Disposition-wise, my husband and I could also tell that something wasn’t right with Ryan. Our typically good-natured, energetic little guy was irritable and lethargic. He’d take longer naps than usual and seemed to lack his usual “spunk.” But it was his physical manifestations that sent me to the pediatrician’s office.
Initially, our pediatrician thought it was a temporary lactose intolerance, brought on by the rotavirus. He said that’s typical…the bug wipes out the lactase in the intestines making it hard to digest dairy. So he put him on a lactose-free diet, which he suggested we follow for about two weeks. Ryan got a bit better, but not entirely. Something else was going on.
I was talking with my mom on the phone one night, and being a former nurse, she had some old medical reference books on hand. She started looking up various symptoms and stumbled upon a description of “Celiac Sprue,” which neither of us had heard of. Long story short, later that week I marched into the pediatrician’s office (I think this was the third trip since the symptoms first appeared), ready to ask him to test Ryan for celiac disease. Fortunately for us, our pediatrician had been doing his own homework and made the same recommendation before we even brought it up. Great – we were on the same page.
Well, you know the end of this part of the story…Ryan was diagnosed with celiac. Because the blood testing was so definitive (his antibody levels were so elevated, making a “false positive” unlikely), and because he was so young, we decided to forgo the “gold standard” of diagnosis: an upper endoscopy to take a biopsy of the small intestines. For children that age, it requires general anesthesia to keep them still, and even our doctors didn’t feel it was necessary or worth the inherent risk. We were told that it would just preclude us from ever having him participate in a research study, since he would not be a biopsy-confirmed celiac. We could live with that.
What we observed after immediately putting him on a gluten-free diet confirmed Ryan’s diagnosis. Within just a day or two of eliminating gluten from his diet, we noticed a change in his mood and energy level. Within a few days after that, his physical appearance seemed to improve.
Ryan thriving after his diagnosis.
Just as we had never before heard of celiac disease, we also didn’t know anyone else who had it. Coincidentally, our pediatrician’s son’s best friend had been diagnosed with celiac years before (which is probably why our pediatrician even thought to test for it), and he gave me the mom’s phone number. After my conversation with her and hearing the heart-wrenching story of her son’s near-death experience before his own diagnosis as a toddler, I felt lucky that Ryan was diagnosed so quickly. While it seemed like an eternity at the time, that month-long period of uncertainty for us can often be years of uncertainty with others, especially adults.
It’s said that the average period of suffering with symptoms prior to a celiac diagnosis is 11 years for adults. But with children you typically know right away something is very wrong a lot quicker – like when Ryan lost over 10% of his body weight in a matter of weeks.
Although celiac disease awareness has come a long way since Ryan’s diagnosis over 8 years ago, we still have a long way to go. Experts typically estimate that at least 87% of the 3 million or so people with celiac disease in the United States have yet to be diagnosed. There are still way too many people unnecessarily suffering with no explanation of their symptoms. It’s not uncommon for them to go from doctor to doctor and even to be told it’s “all in their head.”
Part of this has to do with the fact that symptoms are not always gastrointestinal in nature. While diarrhea, constipation, nausea, stomachaches, and weight loss often raise a red flag, other symptoms don’t often register on doctors’ radars as being connected to celiac…and thus the proper blood tests aren’t ordered. And then there are also folks who are essentially “asymptomatic.”
After Ryan’s diagnosis, we all got tested – my husband and I, our older son, all the grandparents, aunts, uncles, and cousins. Turns out, celiac runs on my husband’s side of the family, and he and our older son have the gene for it (like a third of the population). My mother-in-law was the only one to receive a positive diagnosis of celiac. It was ironic, because she never suspected she might have celiac, even after hearing about the typical symptoms. She claimed she never had gastrointestinal issues. But other health issues over the years might have pointed to celiac, had she been under the care of a well-trained gastroenterologist who knew something about celiac. The sad part of the story is that she swears her own mother essentially died from neurological and other health issues that were likely brought on by undiagnosed celiac.
Fortunately, improved awareness and research have taught us so much, and we all have the power – and responsibility – to educate others about this easily treated disease. Quite often, I hear of or meet people who complain of health issues I suspect are tied to celiac disease – or gluten sensitivity. I typically encourage them to get their doctor to order a blood test as the first step in confirming or ruling out the disease. But it’s surprising how many people don’t want to take that step. Perhaps they don’t know how they’d deal with a positive diagnosis. But as I try to explain, living with celiac today is so much easier than it was even just five years ago. Great new gluten-free products are readily available at virtually any grocery store, and restaurants everywhere have begun to educate themselves so they can offer gluten-free choices on their menus.
So if you do one thing this month, a month dedicated to celiac awareness, please share this article or spread the word about celiac disease in your own way, encouraging anyone with the following symptoms to ask their doctor about getting tested:
- Skin rashes
- Queasiness, nausea, or “weak stomach”
- Stomachaches or abdominal pain
- Neurological issues
- Brain fog
- Rheumatoid arthritis or achy joints
- Unexplained or persistent anemia
- Brain fog
- Weight gain OR loss
Visit the Celiac Disease Symptoms Checklist from the National Foundation for Celiac Awareness (NFCA) for more information on symptoms and testing.
About Karen Broussard
Karen Broussard is the founder of GlutenFreeTravelSite, a website with thousands of user-submitted gluten-free dining and travel reviews, searchable by location. The website and its corresponding free app for both iOS and Android, called Dine Gluten Free, help people find safe “GF-friendly” places to eat wherever they live or travel. Karen also publishes the Gluten Free Travel Blog and is an Associate Editor for Simply Gluten Free magazine. She volunteers at the gluten-free camp that her son attends each summer and has also co-written a comprehensive report titled, The Most Under-Diagnosed Disorder in America: What You Need to Know About the Growing Gluten Epidemic .