As an ardent proponent of celiac disease awareness and someone who does her best to spread a better understanding of gluten intolerance, I feel saddened whenever a new study releases data showing just how often people suffering from celiac disease symptoms go undiagnosed. Researchers estimate that around 97% of all people with celiac disease are as of yet still undiagnosed.
Will your doctor even think to test you for celiac disease? Extensive anecdotal evidence, collected from my email subscribers as well as reported in several well-respected books published by doctors, suggests there’s a good chance your doctor won’t even consider celiac disease during initial visits.
To help you and your doctor better identify your risk for celiac disease, I have created the following checklist, which considers your family history, your medical history and your celiac symptoms: Celiac Disease Symptoms Checklist.
We’ve Known For Years: It Takes Too Long to Diagnose Celiac Disease
What frustrates me most is how often it takes years for celiac disease symptoms to be properly diagnosed. Dr. Peter Green at the Celiac Disease Center for Columbia University estimated that the average time from onset to diagnosis was nine years — nine years! This was an estimate he made several years ago based on his and his colleagues experiences in a Medical Center within a large and diverse metropolitan population. In her “for Dummies” book Danna Korn cited research indicating it took 11 years before symptoms were properly diagnosed.
Now We Know More: Years to Diagnose CD Even AFTER You See A Doctor
Now the journal BMC Gastroenterology has released a study in which they determined the average time it took from the occurrence of first symptoms to the condition being properly diagnosed is about 9.7 years.
And here’s where my heart really goes out to people trying to obtain a proper diagnosis: The average time to diagnosis for celiac disease patients after they went to their doctor about their symptoms?
So on average, people are only being properly diagnosed with celiac disease 5.8 years after they go to their doctor to complain about their problems.
Why Celiac Disease Symptoms Must Be Diagnosed
Studies in Europe indicate people with celiac disease have about 9 to 34 times the chance of developing cancer than the general population, with the most at-risk population being people who have celiac disease but are not treating it with a gluten-free diet.
The most common cancers impacting people with celiac disease are Adenocarcinoma of the small intestine, Thyroid cancer, Lymphoma (primarily non-Hodgkin’s lymphoma), Esophageal cancer and Melanoma. For more detail on this strong relationship, read my lesson cancer and celiac disease.
In addition, undiagnosed celiac disease often dovetails with other autoimmune diseases, including rheumatoid arthritis, type 1 and type 2 diabetes, and multiple sclerosis.
Remember that celiac disease is genetic. Do you know anyone in your family who suffered from one of these cancers? Did they suffer from irritable bowel syndrome or something similar for years before they were diagnosed?
I think there are two lessons for two different demographics here.
Take Away 1: If You’re Concerned About Celiac Disease Symptoms
If you are concerned about celiac disease, you need to be pro-active in seeking help from your doctor. Don’t be a victim. If the blood tests and intestinal biopsies put you in the clear, great. But at the very least make sure you have the proper blood test to screen you.
The proper blood test involves a blood panel (several tests), including testing for endomysial antibodies (EMA), tissue transglutaminase antibodies (tTG), IgG tissue transglutaminase, Total IgA antibodies, and if you have a modern laboratory accessible to you, Deamidated gliadin peptides (DGP).
There is no 100 percent certain and accurate blood test, which is why this complete panel must be taken. (Your doctor may also choose to test for anemia and osteoporosis.) A positive blood test will usually be followed by an intestinal biopsy to confirm the celiac disease diagnosis. But the point here is that you at least want to make sure the proper blood screening is done. For more on testing for celiac disease, read my guide: Gluten Intolerance Test.
The different panels listed aren’t just for testing for celiac disease; they’re testing for an antibody deficiency, which could cause a false negative for one or more of the other blood tests listed. So a simple, single test for a single antibody isn’t enough.
Once you have a diagnosis, it is important you understand what you face in a gluten-free lifestyle. You can get a good start by understanding how pervasive gluten is in our western diet: What Is Gluten?
Take Away 2: If You’re A Doctor
If you’re a doctor reading this, please try to be more conscious and knowledgeable about how common and serious celiac disease is, and most importantly, how often it is left undiagnosed or misdiagnosed as another condition. And please discuss this with your colleagues.
I can do my best to increase celiac awareness, but only the average family doctor can really improve these terrible numbers of undiagnosed celiac sufferers.
If you are a doctor, please spread the word among your colleagues and please raise your willingness to consider celiac disease as a possibility for your patient’s unexplained ailments, even if it just means taking steps to rule it out as a possibility.
5.8 years is 5.8 years too long for anyone to suffer from celiac disease.