Doctor, Give me the news - Why are Celiac Disease & Gluten Sensitivity still so hard to diagnose?

It has been almost 5 years since my daughter was diagnosed. She was the ripe age of 7 before we got it on paper that she had "possible celiac disease with abnormal mucosal biology on her endoscopy results". I remember looking like a dumbfounded deer in headlights when the GI Dr. spouted that off. He handed me a business card of a dietitian and said, "She will get better as long as she eats gluten free. Contact (Dietitian's name) and make an appointment." And then, he vanished into the next room, leaving me still standing there looking dumbfounded.

I remember kissing my child goodbye and my mother and pulling into my parking space at work before it sunk in. "Disease" echoed in my ears. Wikipedia didn't paint as simple of a picture and it was then that my silent rage started to grow at the communication and delivery offered.

We had been through 6 years of constant illnesses and issues and then 4 months of seeing the GI specialist who had prescribed acid reflux medications, claimed it was my daughter's lack of wanting to go to school, referred her to a psychologist, and finally did the endoscopy because I demanded it after the child vomited in a waste basket all night and lost 4 pounds in one week because she was afraid to eat.

This story is not uncommon. This story is the norm if not worse on average.
Some children end up hospitalized before the cause is found.

But why is that possible when celiac disease, gluten intolerance and gluten sensitivity is much more commonly heard of? As a matter of fact, some are sick of hearing about it as is proven every few weeks when I read another version of loathing at the gluten free movement being in their face everywhere. We are in a period of change that is gaining momentum and yet there is just still so much to be done in order to bridge those communication gaps which remain between patients and their physicians, grocery stores, schools, the public & restaurants  .

The top 3 questions that circulate through the support group locally have remained the same since we joined 4 years ago. They are:
1. Who is a good Dr to see for diagnosis?
2. What restaurants are safe?
3. Where do you buy "x" product?

The first question about a doctor circulates every couple of months along with some nightmare story or two. Many of the people in our support group that I talk to spend years trying to find a physician who understands their issues. Or, like us, they find a specialist even if they have to drive an hour and a half away. The drive was well worth the relief of not being treated as if we were crazy. It is a frustrating venture indeed and yet not uncommon for many patients who have other well known diseases.

As you soon find in sharing with other patients, when their healthcare professionals are consistently lacking in understanding, there is a pervading sense of , "where else do we turn?" Do they turn to other patients for guidance? Most certainly! They need understanding and a sense of control just like any other human does when they are ill or struggling.

Because of the frustration I felt as a parent and the struggles my child faced, I began this mission to change the process. The mission is why I started R.O.C.K. Charlotte and the Charlotte Gluten/Allergen Free Expo which also evolved into me taking on 7 events across the nation in 2012. Surely we could achieve that little bit of success in educating physicians in city by city, state by state, and eventually a whole country, right?

People ask me why I don't educate physicians more or include them as we do these events. We would love to! We contact every major Gastroenterology office and Allergist when we plan an event. As we all know, there is no pharmaceutical available yet to help someone who needs to merely eat gluten free (Oh, but they are working on it every day). And as we all know, pharmaceutical companies supply our physicians with over 90% of their continuing education. We have not been able to get a pharmaceutical company to help fund our events or drive continuing education at one yet, because it is of course not profit imperative based to invest in no return - i.e., you eat healthy and get well.

A typical encounter with a medical practice goes as follows:
1. I contact the office and ask for the Office Manager's email because they are who makes the decision.
2.I get a voice mail where I leave a message.
3.IF they call me back, I get an email address.
4. I send them the information and request for any specialist to speak to our Attendees. Then I may or may not get an answer back in waiting for corporate approval.
5. IF and when I get corporate approval, I have to take the event posters/media to post in their offices.
6. IF the front desk person doesn't know anything about it and is rude ( a common occurrence as I try to explain who I am), I have to be nicer than humanly possible just to get the posters/media to the person who is in charge of approval.
7. 85% of the time, they tell me they don't think a booth at the event is worth their investment of staff and money and they have no one willing to work a weekend.
8. Even professional resources for medical professionals state that there are severe issues with condescending attitudes and a superior attitude based on education of professionals within their own staff as well as with patients.

We have continually found that only physicians who have a close family member or special interest in celiac disease and gluten sensitivity are happy to reach out and help. They are the ones whom you meet at one of our events and think, "I wish he/she were my child's physician" They are passionate about their endeavor because they usually have experienced it. This sets these fine professionals in a world apart from the others.

But isn't that true about the restaurant who employs someone who eats gluten free or the owner is gluten free also? Isn't that also true of the small business retailer or national company that began because someone needed the options not available? The answers to those questions should speak loud and clear.

And the Gluten Free Revolution battles onward...

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