What It’s Really Like Living with Celiac Disease
What does it mean to have Celiac Disease in today’s day and age? For 1 in 100 of us worldwide, according to celiac.org, Celiac Disease (CD) means specially curated meals, the uneasiness of trying a new restaurant, and practically bringing your own food everywhere you go. If you have suffered any of the symptoms stated below, you may have CD.
Celiac disease is an autoimmune disorder that makes it difficult for someone to digest and process gluten proteins such as wheat, rye, malt, and barley. If one were to ingest gluten, they could experience such symptoms as severe stomach pains, headaches, skin rashes, upset stomach, and respiratory issues.
Long-term exposure can cause damage to the lining of the intestine, nutrient deficiencies, anxiety, acid reflux, weight fluctuation, depression, hair loss, miscarriages, and even certain cancers, to name a few issues.
Currently, we see restaurants and food brands expanding options to the masses. This causes some consumers to steer into a “gluten free” lifestyle as a trend, which those of us who suffer from CD were not privileged enough to have as a choice.
Having been gluten free for almost 20 years, I have seen and been through it all. Misdiagnoses, anger, denial, helplessness, and even mail ordering food from across the country (this was pre-Amazon days).
It’s harsh to say but the best way to get a diagnosis is to listen to your body and diagnose yourself first. Yes, you can take blood and allergy tests, but they can only tell you so much or give you an inconclusive result. You can also have an endoscopy done, but this can be rather uncomfortable and you would need to be ingesting gluten quite often in order for the doctor to see any damage being caused to your intestinal lining.
You may also hear from others who have been through it that CD can likely be misdiagnosed. I was told that I had a stomach virus that just wouldn’t go away, while other sufferers can hear IBS (irritable bowel syndrome), Crohn’s, or quite plainly, an eating disorder.
A Path to Diagnosis
My solution? Start a food diary. Log each meal and any symptoms that may occur during digestion. Put together a chart and with the process of elimination, see what agrees with you or not. For example, if you think you are lactose intolerant and you have a giant glass of milk or an ice cream cone that results in an upset stomach, you may say, dairy ain’t quite right for you.
CD is also said to be a hereditary disease. Does one of your parents or grandparents have stomach issues? This fact alone can help you along your diagnosis journey. Have an open conversation with family members, doctors, friends, favorite restaurant waiters and owners. Join a support group, attend a gluten free festival or follow some gluten free bloggers… have some fun in the kitchen and create new recipes.
Although we see this fad of gluten free living taking over homes across the country, let us embrace the thought that the knowledge of this disease is reaching new heights. Educate and continue to learn.
And one particularly obvious tip… always keep a gluten free snack handy, especially if you find yourself at a party or celebration, where… well nobody has ever had to give a gluten free menu a second thought.