Intestinal biopsies have long stood at the front of the line as the ‘gold standard’ for celiac disease diagnosis. If little pieces removed from the small intestine failed to reveal major tissue destruction, a patient was told that they were free of the disease, despite what other factors came into play.
I have been frustrated by this approach for years because I have too often seen the devastating effects created by telling someone who was gluten intolerant that they were ‘okay’ to eat gluten simply because their biopsy was negative.
An intestinal biopsy does not tend to show positive during the early stages of celiac disease. Quite the contrary, the disease must be quite advanced before this insensitive, invasive and expensive test is positive. That is my greatest complaint. Celiac disease is devastating to many systems of the body, chief amongst them the digestive tract and the nervous system. The more advanced the damage the more difficult it is to regain one’s health.
Not only are we barely diagnosing 5% of those who suffer, but we typically only do so after the patient has spent a decade seeing numerous doctors. We then hold out an insensitive test as the standard that must be met to receive a diagnosis. Ridiculous!
If it was you or a loved one, wouldn’t you want to receive a diagnosis as soon as possible, before long term damage occurred to your body? Of course you would.
Two new research studies were just released in the Journal of Pediatric Gastroenterology and Nutrition both of which fly in the face of conventional thought regarding intestinal biopsies. Published in May and June this year, these studies both came to similar conclusions although they took different routes. They concluded that in the patients they studied a biopsy was unnecessary for the diagnosis of celiac disease.
The study in May, entitled “A Biopsy Is Not Always Necessary to Diagnose Celiac Disease”, examined 283 pediatric patients suspected of having celiac disease. The results of a blood test, tTG, and their response to a gluten free diet was also investigated.
The conclusion of the research was that pediatric patients whose tTG lab test is equal to or above 100 U/mL (units per milliliter) and for whom symptoms improved upon instituting a gluten free diet, may not need a small intestinal biopsy to confirm their celiac disease.
This is a tremendous step forward in the diagnosis of celiac disease. I personally let out a “hurrah” at the point regarding the importance of seeing improvement with a gluten free diet. This is a contention that I’ve held for a long time but we are only just beginning to see it given validity in research. Feeling better on a gluten free diet is a valid diagnostic tool and should not be ignored.
The second study published in June, also in the Journal for Pediatric Gastroenterology and Nutrition was entitled, “HLA-DQ genotyping combined with serological markers for the diagnosis of celiac disease; Is intestinal biopsy still mandatory?” I know that title is a mouthful but basically they were looking at combining genetic testing with blood testing and asking if that was sufficient to diagnose celiac disease, without a biopsy.
They found the association of genetic and blood testing to have a very high predictive value for celiac disease. In fact the numbers approached 99%!
The researchers’ final recommendations were to omit the biopsy and utilize blood and gene testing instead.
If this area is new to you, then you’ll just have to trust me when I tell you that these results are a bit earth shattering in this field. In fact, many would argue with you that such research even existed, so entrenched are they in an outdated model. But the results are out, two in the past two months, with more to come I’m sure.
It’s time to confront the facts that we, as a country, are poor at diagnosing celiac disease and our ‘gold standard’ test has fallen down way too many times to ever regain the ‘gold’ crown. Doctors in this field shouldn't feel badly about learning more and changing their opinion as new information comes available. Doctors are supposed to do what they do for the greatest good of their patients, period.
Please share this information with friends, family and your doctor. We have a long way to go before we can pat ourselves on the back for our high diagnostic rate of celiac disease and gluten sensitivity. But we can make strides by leaving older, less accurate diagnostic modalities behind us while embracing newer more effective testing.
Contact me with any questions you may have. I am here to help and task myself with staying on the cutting edge of this field. Our destination clinic treats patients from across the country as well as internationally. We would be delighted to assist you.
To your good health,
Dr Vikki Petersen, DC, CCN
Founder of HealthNOW Medical CenterCo-author of “The Gluten Effect”