We were lucky with Emma’s diagnosis. We think it took approximately 5 months – from the time in January when we knew something was wrong – to the time she was diagnosed with celiac disease in late May/early June. Yes, we had a lot of extra doctor’s appointments and yes, it cost us extra money — as this new research  implies happens with celiac disease. But we did not go through nearly what others have.

Four years* is the average length of time it takes for diagnosis in this country, and with it, the economic pain increases with medical bills piling up for: x-rays, blood work, emergency room visits, urgent care, and specialist visits. But if the medical community looked at celiac as a possibility sooner and tested for it – many of these visits and tests that most of us have been through – may not have been necessary.

That’s the crux of what this study “Economic Benefits of Increased Diagnosis of Celiac Disease in a National Managed Care Population in the United States” is saying. The quicker you diagnose, the cheaper the health costs for celiac disease.

The study published in the Journal of Insurance Medicine this month, found the mean medical cost in the 12 months before diagnosis was approximately $8500; it peaked at the time of diagnosis and one year after diagnosis at $12,000; then went down to an average of $7,400 in the two to three years afterward.

Medical News Today quoted the study’s author Dr. Peter Green, Professor of Clinical Medicine and Director, Celiac Disease Center at Columbia University Medical Center, “We now have evidence that the increased awareness and diagnosis of celiac disease would benefit not only patients but would result in health care cost savings.”

Dr. Green added, “there needs to be a greater physician education in the various modes of presentation and manifestations of celiac disease and more use of the widely available screening blood tests that detect the disease.”

Making Change

So now what?  Is there anything we the patient can do to help speed up this process?

Is the solution that anyone with celiac disease anywhere in their family, gets the simple blood test? When I solicited diagnosis stories last fall there were a handful of people who were diagnosed simply by this blood test.  And they did it, not because they had obvious symptoms, but because a relative was recently diagnosed.

Is the solution genetic testing? I’m not sure. I know a lot of people who have done this and they know which family member to watch for symptoms related to the disease. Knowing who has the gene for celiac disease may help eliminate unnecessary testing.  However, my daughter’s gastroenterologist told our family about 3-4 years ago it wasn’t reliable enough for them to recommend it.  Maybe that technology has changed.  So far we haven’t done it.

So who is taking the lead in raising awareness to the medical community about this disease and all the symptoms and health issues that can manifest as a result of it?  This study, and others of a similar nature, raise extremely important questions – but when will the answers come to fruition?

The rate at which a diagnosis happens does need to be faster – the research revealed here today is a nice side benefit. But celiac disease that goes undiagnosed for years – even decades – can have such ill effects on the body, causing health issues from which it may likely never recover: osteoporosis to name one. I praise the celiac bloggers who are out there. We are raising much-needed awareness. The more people who report this study the better. More people will take notice and maybe – that will include people in the medical profession who can make a difference.

*Sources: University of Chicago Celiac Disease Center Fact Sheet & Characteristics of adult celiac disease in the USA: results of a national survey. Green, P.H. et.al. American Journal of Gastroenterology, 2001, 2006.

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