Why Do I Need A Celiac Diagnosis?

Celiac Disease is a tricky condition. It is grossly under-diagnosed in the United States. The National Foundation for Celiac Awareness has a list of symptoms and facts about the disease that will hopefully drive more people to request the tests from their doctors. But why is it important to have a medical diagnosis?

Many people suffer for years and are mis-diagnosed with various other conditions including Chronic Fatigue Syndrome, Lactose Intolerance, Fibromyalgia, IBS, or even Cancer. When no relief comes from the various symptoms, many people look to the Internet and “self-diagnose” by cutting gluten out of their diets. Suddenly they feel fantastic and regain the health that seemed so elusive.

If they feel healthy, then what’s the problem? Perhaps nothing, but there are a few issues at work. First of all if you don’t have a medical diagnosis and there ever is a “cure” for Celiac Disease (other than eliminating gluten from the diet) your insurance won’t pay for it. Schools might not accommodate your child’s dietary needs without a medical diagnosis. Your flexible spending account won’t cover the difference in cost between gluten free and non-gluten free food items without a diagnosis. It also may become difficult at some point down the road to be truly vigilant with your diet if you aren’t 100% sure that you have the condition.

Not only is it important to have a blood test confirming if you have the antibodies, but it needs to be followed up with an endoscopy and biopsy to confirm that the intestinal villi are damaged. The key here is to keep eating gluten until the day you have the endoscopy. If you cut gluten out of your diet too soon and your intestines heal before you have the endoscopy, then you can’t be sure of your diagnosis. As someone desperate to feel better and start healing as soon as possible I too started cutting gluten out of my diet. Luckily my gastroenterologist was well-educated on Celiac disease (surprisingly many are not) and told me to keep eating gluten until the last day. My last gluten filled pizza was from an airport Sbarro (my Italian friends would be ashamed J ) then later I indulged in a big waffle cone filled with ice cream and a piece of cheesecake the night before. I figured why not go out with a bang!

The endoscopy in the morning was not nearly as uncomfortable as I had feared. It was performed in the doctor’s office under light-anesthesia. The doctor uses a scope with a small camera to look at your stomach and intestines and take the biopsy. I had my results right away; I was about to embark on a gluten free roller coaster ride. [on the plus side, the diagnosis meant I didn’t have to follow up with a colonoscopy which I understand is much more uncomfortable] I was lucky my diagnosis happened quickly by Celiac standards, only 3.5 weeks of painful unbearable symptoms. I have heard that most people suffer for an average of 4 years. Hopefully as awareness grows, that number will decrease and we can all start feeling and living well.

(Because I am not a doctor, the content on this blog is intended for informational and entertainment purposes only and should not be considered medical advice – although my father is a lawyer )