Thursday, March 7, 2013

Listen to YOUR Doctor

No one wakes up one day and says “Hey! What can I do today? I think I will become a Celiac.” Either you are born with the gene, or you are not. Period—end of story.

The answer may not be that simple because some folks can have non-Celiac gluten sensitivity/intolerance or a wheat allergy. Each of these are a little different and should be diagnosed by a trained Celiac specialist who can supervise the diet. Other than a uniform, itchy rash known as dermatitis herpetiformis, one of the tell-tell signs of Celiac disease, the symptoms of all three—Celiac, non-Celiac gluten sensitivity/intolerance and wheat allergy—can be very similar.

If someone is experiencing symptoms, the Celiac specialist may do a genetic test to determine if you have the gene. If so, she may want to do further testing to confirm a Celiac diagnosis and the amount of damage to the small intestine BEFORE advising a gluten free diet. At any rate, the method of diagnosis and follow up care should be left to Celiac specialists who work with patients on a one-to-one basis.

The problem I have with good intentioned Samaritans such as those at one particular research center, which shall remain nameless at this point, is that they broadcast general advice that just may not be in the best interest of those affected with the disease. Until such time a drug is developed to curb the symptoms of Celiac disease, the current treatment for Celiac disease is a gluten-free diet. To advise doing a 12 week wheat/gluten stress test to confirm Celiac disease puts patients at risk for increased intestinal damage, not to mention making many extremely sick. Who would want to do that just for a positive confirmation? If someone has been off gluten for any significant length of time, a wheat/gluten stress test can place someone who is extremely gluten intolerant at great risk.
This same group made the statement via Twitter that “ . . . many patients, in particular adults, improve only partially on a gluten-free-diet, and this diet is difficult to follow, costly and inconvenient.”
To me, this is a stupid statement. If I were the parent of a Celiac child, I can see where getting a child to follow the diet in a gluten laden society would prove difficult. But, as an adult, a diet filled with fruits and vegetables is a dream come true. Eating gluten free has prompted us to install a raised bed garden in our back yard, providing us with lots of yummy organic veggies throughout the summer. Our fruit trees sporadically provide us with luscious fruits, which I preserve using a water bath canning process for use during the winter months. Plus, we grow most of our herbs and spices that we use throughout the year.
Is this diet hard to follow? No! It is a piece of cake, literally! The only caveat is you have to read every word on every label to avoid hidden sources of gluten.
Is this diet expensive? Any diet that values fresh fruits and vegetables can be pricey, but we never ate the cheap junky fast food that no one could tell me what it contained anyway.
Is this diet inconvenient? I have to admit that sometimes following a gluten free diet while traveling can be pretty nerve wracking. Restaurants do not generally train their wait chefs/cooks, managers or wait staff Celiac disease. Again, the higher end restaurants particularly in high tourist traffic areas do a better job than let’s just say the run-of-the-mill diner on the corner. But, you know what? We always enjoyed dining in nice restaurants, especially on special occasions. Our experience is that privately owned restaurants also do a better job—hey, their insurance and reputation are on the line if you get sick on their watch. Chain restaurants, even when advertise a gluten free menu, are the worst and are only as careful as the manager and chef/cook on duty at the time you go in to eat.
Bottom line, if you suspect you have Celiac or a number of seemingly unrelated symptoms that no one doctor can diagnose, find a good Celiac specialist. A reputable Celiac specialist will become your best friend. Keep an open dialogue with her as she guides your recovery and healing process.
One last thing, remember that gluten may be just one of the culprits. Don’t get out of patience if removing gluten did not fix all of your symptoms. But, you have to rule out one thing at a time. Otherwise, you do not know which food eliminated made the difference.

Author: Dr. Jacquelyn P. Horne
Copyright: 2013

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