May is celiac disease awareness month, and lots of content is circulating online about this autoimmune condition that affects 1% to 2% of Americans. When people with celiac disease consume even trace amounts of gluten — a protein naturally found in wheat and its close relatives like spelt, barley and rye — their bodies launch a self-directed immune system attack that can cause damage to the intestinal lining and result in a variety of health problems beyond the digestive tract.
A meticulously strict gluten-free diet for life is the only treatment for celiac disease, and when people with celiac disease adhere to this diet for the long term, their guts typically heal fully.
Having worked with hundreds of patients with celiac disease over my years as dietitian in a gastroenterology practice, I’ve gotten an insider glimpse at how different people with celiac disease live with the condition.
To some, their celiac disease diagnosis is a welcome explanation for years of feeling miserable and sick, and the inconvenience of a gluten-free diet is a small price to pay for being able to feel consistently healthy and well. Even minute amounts of exposure to gluten make them feel so awful for days, that they take painstaking measures to avoid it at home, as well as when eating out, traveling and celebrating special events.
But even with the growing popularity of gluten-free lifestyles and increasing availability of gluten-free packaged foods and restaurant menu items, it can still be quite inconvenient to follow a strict, GF diet.
When you really want pizza or pasta, it sucks to have to order a salad when dining out because it’s the only gluten-free menu item. It can be embarrassing to grill restaurant servers about menu items and prep methods when dining out, especially if sharing a meal with work colleagues or out on a date.
It’s annoying to have to bake your own gluten-free birthday cakes because there’s no gluten-free bakery in your area. It’s also sad to miss out on your mom’s famous fill-in-the-blank-of-your-favorite-nostalgic-dish because it’s made with flour, and her attempts at gluten-free substitutes just don’t taste the same. Trust me, I get it: I’ve been living with celiac disease for the past 12 years.
For any/all of these reasons, many of my patients seem to experience a “vigilance fatigue” after months or years of strict attention to avoiding cross-contamination, reading labels and always erring on the side of caution when eating out. It may result in laxity with adhering to the GF diet: not grilling their servers about ingredients when dining out, ignoring the likelihood of soy sauce in a dish or opting for the side of French fries, knowing that they likely shared a deep fryer with battered or breaded menu items. Still others knowingly “cheat” on their GF diet with various degrees of frequency — from just once in a while to once a week.
My patients with celiac disease who only experience mild symptoms when consuming gluten — and especially those who have “silent celiac disease” and experience no noticeable symptoms at all — can find it especially hard to stay motivated to consistently follow their medically-necessary GF diet.
Beyond the fatigue factor, some people with celiac disease don’t fully understand what actually happens inside their bodies when they eat gluten, and how one random bite of cake or stolen moment with a croissant can have longer-lasting impact than just the duration of the bloating, stomachache or diarrhea it provokes.
Recently, I met a new patient who continued eating gluten for 4 years after a celiac disease diagnosis. She did so believing that her mild symptoms of temporary gas and bloating after eating gluten meant that she didn’t have it “as bad” as her brother, who got violently ill with even trace exposure. Although she had such severe iron deficiency anemia that it required intravenous iron infusions, no doctor had ever pointed out the connection between her ongoing gluten consumption and the likely nutrient malabsorption as a result of it. Damage was being done to her gut with each exposure, even when it didn’t feel so bad.
So in recognition of celiac disease awareness month, I think it’s important for those of us with celiac disease to understand why maintaining ongoing vigilance in our gluten-free diets remains important month after month, year after year.
The Lasting Effects of Gluten
“The inflammatory response when a person with celiac disease is exposed to gluten starts within just a few hours, and involves the propagation, migration and invasion of white blood cells into the gut’s lining,” explains my gastroenterologist colleague, Dr. Eric Goldstein of East River Gastroenterology and Nutrition in New York City. But the duration of this inflammatory process set off by even a single, seemingly small intake of gluten will far outlast the particular digestive journey of the food itself.
Start to finish, the cascade of inflammatory reactions isn’t hours-long or even days-long, but more likely weeks-long. “The lymphocyte (white blood cell) invasion of the gut’s tissues stimulated by that bit of cake doesn’t just disappear immediately; it can be going on even a week later. And once the storm is over, it can take another week to re-grow the damaged gut cells — and then those cells may take several more days to mature and start producing their normal levels of digestive enzymes.”
Exposure Just Once or Twice a Year?
Let’s say you have celiac disease, you pay close attention to your gluten free diet, but you still have one or two accidental, isolated exposures per year. According to Dr. Goldstein, there will be plenty of time for your gut to heal between these exposures.
But if you’re chronically lax with your gluten-free diet and have intentional or unintentional exposures even a few times per month, “you’re piling on additional injury while the gut is still going through the previous injury. The gut never gets a chance to heal before the next exposure, and this leads to chronic inflammation … and this is the case even if you are following your gluten-free diet ‘most of the time.'”
The risks of poorly-managed celiac disease are well-documented. They include:
— Iron deficiency anemia.
— Osteoporosis due to chronic malabsorption of calcium.
— Developing small intestinal bacterial overgrowth (SIBO).
— Infertility and/or miscarriages.
— Neurological symptoms and injury.
— A variety of digestive system complaints.
People with celiac disease are also at elevated risk for developing certain cancers of the small intestine, and there’s the strong suggestion — but not conclusive data — that better adherence to the gluten-free diet may reduce this risk. So as much as I miss some of the goodies from my old, pre-celiac life, the fleeting pleasure of a stolen bite of croissant isn’t worth sacrificing my long-term health for.
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Celiac Disease: Is It OK to Cheat on Your Gluten-Free Diet? originally appeared on usnews.com