Receiving a Celiac Disease diagnosis can be overwhelming, to say the least. If you have just been diagnosed and feel unsure about where to turn, relax and read these tips from guest blogger Lisa Cantkier, a seasoned Celiac.
When I was just 18 months old, I was medically diagnosed with Celiac Disease (CD)—a digestive disorder that affects approximately 1% of the population. I struggled with chronic diarrhea, severe malnutrition, weight loss, weakness and many other symptoms. After a terminal cancer misdiagnosis and a lengthy hospitalization, a bowel biopsy spared my life and verified that I had Celiac Disease. Today the first step toward a CD diagnosis is a simple blood test that physicians can order when deemed necessary.
In addition to being classified as a digestive disorder, CD is also an autoimmune disease in genetically susceptible people. Individuals with the disease are intolerant to gluten, which is a protein found in grains such as wheat, barley, rye and their hybrids, such as triticale (a hybrid of wheat and rye). In addition, those with CD are affected by other grains such as oats, for example, that may have been contaminated by said gluten-containing grains. These sources of gluten are found in countless packaged foods, beverages and, even, medicines. When people with CD consume gluten, the small intestine that absorbs nutrients from food is damaged—this is what makes the disease autoimmune—the body attacks itself.
When left untreated, the disease can cause serious health problems to virtually any system of the body. CD is also linked to over 200 symptoms. This is one of the reasons why the disease is so difficult to diagnose. According to Beyond Celiac, a non-profit organization in Pennsylvania that aims to improve access to research, treatments and a cure for CD, an individual will wait 6-10 years to be correctly diagnosed and it is estimated that 83% of Americans who have CD have not been diagnosed yet.
Beyond Celiac states on their website, “Studies of adult celiac disease patients, including one done at the Mayo Clinic, have shown that even after two years on the gluten-diet, 30 to 60 percent have persistent gut damage. Persistent gut damage has been associated with an increased risk of lymphoma, low bone density and fracture.”
After looking at various studies, the history of the gluten-free diet and my personal journey with the disease, it appears going gluten-free is a first step to healing, but certainly not the last for all Celiacs. Like many individuals with refractory Celiac Disease (a small subset of CD patients who experience persisting symptoms despite strict adherence to a gluten-free diet), my recovery has mostly been attributed to the removal of all grains and starchy carbohydrates from my diet. A grain-free or paleo diet is the best way to describe this way of eating.
If you have been recently diagnosed with CD, it can certainly be a challenge to manage the disease at first, but like all learning curves go, it does get easier with time. Here are a few simple tips (in random order) to help steer you in the right direction as you travel along your road to wellness.
Start with the basics and take your time learning about the foods you can and cannot tolerate. Don’t expect to absorb everything you need to know overnight. Create a basic “yes” and “no” list to get started, and post it on your refrigerator to reference. Some non-profit celiac organizations sell pocket dictionaries that list ingredients that are safe and unsafe for celiacs, which can come in handy when you are grocery shopping or cooking. Learn about the basic facts and myths of CD, and share the information with loved ones so you can eat safely in their company.
Cross-contamination of food (in this case) is caused when the food you want to eat has come into contact with another food containing gluten. According to the Canadian Celiac Association, “Anywhere you see crumbs is a potential place for cross-contamination.” For example, counter tops, cutting boards, microwaves, toaster ovens and containers with spreads can be major culprits. Get your own toaster and cutting boards. Boil, bake, fry and cook your meals in their own dedicated and separate pots and pans. Having your food (especially protein sources) cooked on foil will also help prevent cross-contamination. Another important tip is to avoid purchasing gluten-free flours in bulk. Also, don’t forget to ask, ask, and ask again if the food you are about to consume is safe (I always verify with wait staff and the chef at restaurants). These tips apply to cooking at home, dining out at restaurants and in the homes of loved ones.
Although you might not be feeling very social, a support group could be just what the doctor ordered. You will be amazed by how much you can benefit from non-profit support groups. Make an effort to attend workshops and events, including consumer trade shows where you can sample new products. There are lots of special events that take place during Celiac Disease Awareness Month. Support groups also offer emotional support and advocacy opportunities. The Celiac Disease Foundation, Celiac Support Association and Beyond Celiac are examples of non-profit organizations that offer support groups across the country.
Many doctors recommend that Celiacs have certain nutrient levels monitored every 6 to 12 months through blood testing, especially vitamin B12, vitamin D and iron which are often lower than they should be. If you have ongoing issues with deficiencies, ask your health provider if supplements are right for you.
There are a lot of gluten-free junk foods on the market. Just because they are labeled gluten free doesn’t mean they are good for you! Learn how to manage your new diet the right way—by incorporating nourishing foods into your meals. For example, stick to clean, nutrient-dense whole foods, and avoid those that are refined, processed, packaged and filled with sugar and chemicals (or ingredients you can’t pronounce!). Eating wholesome foods will help you feel your best and conquer stress. You will also get more nutrition in you which Celiacs require, as CD is a malabsorptive disease.
There are so many delicious and nutritious celiac-friendly cookbooks and recipes available online, thanks to gluten-free food bloggers, chefs and cookbook authors who take the time to share their creations. Try new recipes that look appealing, and have fun with the experimentation!
Lisa Cantkier is a nutrition educator and writer. She enjoys writing about the latest nutrition and health research findings. Living with the challenges of Celiac Disease for a lifetime has taught Lisa that every bite matters—food is one of the most important aspects of health and it can either harm or help us. She is also the co-author of The Paleo Diabetes Diet Solution, a cookbook that includes 125 delicious recipes that are free of gluten, grains, dairy and added sugar. Visit Lisa's website HealthfulCommunications.com and follow her on social media at @LisaCantkier
*Originally published in Belvoir Media's University Health News
To purchase Lisa’s book, The Paleo Diabetes Diet Solution, click here.