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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