Based on prevalence studies, it is estimated that 3 million Americans have Celiac Disease. Of these 3 million people, 2.9+ million have no idea that they have a serious autoimmune disease. This is a huge problem….
A few explanations for the atrocious rates of diagnosis:
-Only 1/3 of Celiacs have “classic” symptoms, such as abdominal pain and chronic diarrhea. Many of the symptoms of celiac disease, such as reflux, fatigue, anemia, oral ulcers, joint pains, hair loss, osteoporosis, seizures, migraines, infertility, etc. can be seen in other conditions and lead to errors and delays in diagnosis. There are probably many people with diagnoses such as chronic fatigue syndrome or fibromyalgia who actually have celiac disease as their underlying problem.
-Doctors used to teach that children with celiac disease would “outgrow” the condition, so there are many adult celiacs who believe that they outgrew their problems with wheat.
-The screening blood tests for celiac disease can be inaccurate.
- Although there is evidence that patients need to have tests for several celiac antibodies, many labs are not performing all of these.
- The labs that must be performed are 1. IgA endomysial antibodies, 2. IgA and IgG tissue transglutaminase antibodies, 3. total IgA antibodies, and 4. deamidated gliadin peptides.
- 3% of celiacs have selective IgA deficiency, so if total IgA antibodies are not tested, the rest of the test results will be meaningless (meaning that celiac antibody tests will be negative even if celiac disease is present).
-Genetic testing is not perfect either. Most labs will test for two genes, HLA-DQ2 and HLA-DQ8, which are found in 95% of people with celiac diease. If a patient doesn’t have these genes, even if they get horribly sick from eating gluten, they are often told that they do not have Celiac Disease and may not be offered further testing. However, in 3-5% of cases, patients with Celiac Disease on biopsy are negative for DQ2 or DQ8. So it is possible to be a Celiac, even if you don’t have the 2 most common genes.
-Many biopsies are done incorrectly. According to most experts, the “gold standard” of diagnosis is an endoscopy with biopsy. Celiac disease destruction of the small intestine can be very patchy, and if the wrong areas are biopsied, and/or not enough tissue samples are taken, it can be missed. It is essential that at least 4 samples are taken. It is essential that the duodenal bulb be biopsied in all cases. Despite the guidelines, only 35% of biopsies are done correctly. Many patients have classic symptoms of celiac disease, positive antibodies and/or gene tests, but have negative biopsies due to the wrong area being biopsied. They are labeled as being gluten intolerant and some are sadly told and advised to continue to eat gluten!
-Right now there is no cure. Celiac disease is treated with the gluten free diet, but there is not a pharmaceutical “magic bullet.” I think that when there is finally a pill to treat this disease, and the associated marketing campaign, that people will finally get diagnosed in large numbers.
The bottom line is that if you or a loved one has any symptoms of celiac, it is worth researching the idea of celiac disease and discussing with your doctor. A lot of people who I have met have been diagnosed after asking their doctors to test them. Also, the book “Celiac Disease: A Hidden Epidemic” by Peter Green, is definitely worth checking out if you have any suspicions or conerns that gluten is causing you harm.