May is Celiac Disease Awareness Month

Sue Smith, MS, LDN, shares her Celiac Disease Diagnosis Story 

May is Celiac Disease Awareness Month and this hits home for me because I happen to be one of the few people who have celiac disease. Approximately 1 in 100 people worldwide has been diagnosed with this disorder. Celiac disease is a genetically driven autoimmune disease causing the body to launch an immune attach on the small intestine after ingesting gluten. Gluten is a very long protein in wheat, rye, and barley and is difficult to digest. I did genetic testing and found that I, indeed, have a mutation for the gene for celiac disease which was activated later in my life.

My story starts in 2005 when I was having some strange GI symptoms which were very embarrassing at the time. My main symptoms were non-stop belching and hiccupping (this is really fun at parties!). I would not want to go out in public because I could not control my symptoms. Other people with celiac disease may have GI symptoms of gas, bloating, constipation, diarrhea, nausea, or acid reflux.

There are also silent symptoms of celiac disease which are not as obvious such as anemia, nutrient deficiencies, osteoporosis, malnourishment and in kids, failure to thrive or short stature. Untreated celiac disease can lead to more serious health issues like small bowel cancers, coronary artery disease, infertility and miscarriage, migraines, and other autoimmune diseases.

This happens because the villi (small finger-like projections) that line the small intestine would get damaged and not able to absorb nutrients.

I was finally diagnosed after completing a blood celiac antibody test and a small bowel biopsy taken by a procedure called an endoscopy (tube down the throat to the small intestine). My doctor then informed me that the only treatment for celiac disease is a life-long gluten free diet. I really didn’t know what gluten was but did a bunch of research and found that gluten is a long protein found in wheat, rye, and barley. I had so many questions. How could I go without eating any wheat? What could I eat? What could I order at restaurants?

I found that there are plenty of gluten-free products as alternatives to bread, crackers, cookies, cakes, and pastas (some of them not very tasty but others very yummy). I realized that these products are highly processed, and I decided not to consume too many of these and to focus my diet on eating whole, unprocessed foods like fruits, vegetables lean protein and healthy fats. I must be very careful when eating out, but many restaurants offer gluten-free options.

I have been living with celiac disease for 16 years and am living proof that eating a gluten-free diet is possible and healthy. Even though having this disease is not the easiest thing in the world to deal with, I try to look on the bright side and I feel lucky to have celiac disease. It forced me to become more aware of my diet becoming healthier and happier as a result, even if it means I am not as fun at parties!

Today, Sue shares her passion for healing through proper diet, nutrition and lifestyle with patients at Aligned Modern Health. To learn more and schedule your next appointment, connect with our team by completing the form below!

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