Unfortunately, as all providers know, tests are just tests. They are pieces of information. As a dentist I get asked all the time why the xray didn’t show the tooth fracture or abscess. An xray can only see so much, sometimes the imaging is definitive other times not so much. The same with Celiac testing. I had many signs and symptoms and was fortunate to have a positive serology and positive biopsy. What if the serology was inconclusive? I’m fairly certain my GI doc would have told me my problem wasn’t Celiac disease and I would have still had symptoms of the disease.
I happened to show up at the GI docs office during one of the GI upset times and also had Anemia that wasn’t present 2 years prior. I wonder what the serology would have shown had I showed up 2 years earlier, would it have been negative? I don’t know. I do know that as a dentist I have had cases where patient history was more important than any test I could perform.
Sadly, celiac disease is still a relatively unknown disease. Only *35% of patients report chronic diarrhea. Many patients report no GI issues at all! Often the best diagnosis is trial treatment. Surgeons do it all the time, take out the tumor to find out what it is. There is less known about gluten sensitivity and the only true test is a Gluten Free diet trail!
The idea that positive serology is necessary before partaking in a gluten free diet is the reason why many don’t trust their physicians. Patients can easily try a gluten free diet and see if their symptoms improve and sometimes go away completely, which undermines their feelings towards their provider if they feel better. Why aren’t providers ready to take part in the fact finding part of the diagnosis?
Celiac disease is the only disease that has no medication and treatment other than a diet change. I asked my Gastroenterologist how I would know if I was getting better and he didn’t really have an answer other than don’t eat gluten ever! The guys over at SCD Lifestyle have a really good article: The Gluten Free Lie: Why Most Celiacs Are Slowly Dying. Less than half the diagnosed celiac patients will have a healed mucosal lining in 2 years on a strict gluten free diet, one study showed only 8% of patients with a healed gut mucosa. How would my gastroenterologist know what to do if my mucosal lining wasn’t healed by a gluten free diet alone? I was fortunate to have a friend that is a specialized nutritionist to help me wade through the process of healing my mucosal lining and it’s still healing 4 years later. Through my nutritionist I found CyrexLabs a relatively new lab that specializes in gluten related immunological testing. While not perfect it offers clues to how my immunological systems is responding to gluten and other agents. These are pieces of the puzzle.
While diagnostic testing is necessary it is often non-conclusive and dietary changes are often helpful in determining a diagnosis. If I had had a negative serology but a positive response to the gluten free diet would it in any way change the outcome of my health? I’m not sure my life would be any different without a confirmed celiac diagnosis if I felt better.
What was your experience? Did you trial a Gluten Free diet on your own? At the suggestion of your physician/medical practitioner?
* Celiac Facts and Figures from the University of Chicago Celiac Disease Center