It takes on average 10 years for someone to be accurately diagnosed with Celiac Disease. This is in part because many medical practitioners are not looking for Celiac Disease and in part because of the less than perfect testing methods.
Celiac Disease is considered by many to be an extremely rare condition and therefore is not often considered as a possibility. However, in North America, Celiac Disease affects somewhere between 1 in 100 to 1 in 200 people. This means that between 5 to 10 people in a group of 1000 will have Celiac Disease. That's not too rare if you ask me or anyone suffering from the symptoms of Celiac Disease. Unfortunately, most of these people will be unaware for many years if they ever do get an accurate diagnosis.
Grain Sensitivity is probably more common than Celiac Disease but it is diagnosed much less frequently. The reasons for the low rates of diagnosis are basically the same. Most medical practitioners are not looking for Grain Sensitivity as a contributing factor to their patients' ill health and many practitioners are not aware of how to test for Grain Sensitivity.
The "Gold Standard" test for diagnosing Celiac Disease is a biopsy of the small intestine. In fact, the biopsy is considered to be the only definitive testing measure. Blood tests like tissue transglutaminase are available and utilized as a screening tool but are not considered to be diagnostic. You may ask, what is the problem? It seems like it is pretty simple. For patients who have any possible symptom of Celiac Disease you should run a blood test to screen for it then do a biopsy if the blood tests are positive to confirm the diagnosis. This sounds great but unfortunately these testing measures are not perfect.
We do not know how accurate or inaccurate biopsies of the small intestine are in diagnosing Celiac Disease. They are believed to be the most accurate test available but that does not mean they are perfect. The small intestine is over 20 feet long and it is quite possible to obtain a sample from a section of the small intestine not affected by Celiac Disease. And, what about diagnosing Grain Sensitivities where there may be no inflammatory response in the intestines?
I have seen a number of patients who have been tested for Celiac Disease and were told that they do not have it. I have also seen a large number of patients who have done skin prick allergy testing for food allergies, including wheat, and been told that they have no allergy or sensitivity. These people, with significant symptoms and health conditions are told that gluten and wheat are not playing a role in their health problems. However, when we remove gluten from the diet and accurately test for food allergens through blood testing we often find that wheat and/or gluten are significant contributing factors to their health concerns.
The main message I would like to communicate in this article is that Celiac Disease and Grain Sensitivity are often not considered and often have false negative results with the standard testing measures when they are considered. If a person's health improves when they eat gluten-free or wheat-free does it really matter what the lab tests results say? If symptoms disappear and the person feels better perhaps this is the most important test of all.
In the next column we will discuss the conventional medical approach for treating Celiac Disease.