I assure you; 15 years ago, “gluten free doesn’t mean taste
free” wasn’t really a slogan that caught on yet. After I was diagnosed, my mom
was on the hunt to find every suitable gluten free substitution that was out
there. Don’t do this. You might be tempted, but please learn from my
experience! You don’t really need many products that are gluten free to survive
and in fact you will feel so much better without all of that processed stuff in
your system. Once I changed my diet and I began to heal, I was suddenly
absorbing nutrients…
Speaking of absorbing nutrients lets back track for a minute…
What is Celiac
Disease? It is a malabsorption, malnutrition disorder. There are over 200
symptoms, some people have many symptoms and some have no symptoms at all! It
is a genetic autoimmune disease, but you can be the first one in your family to
be diagnosed. After you are diagnosed, family should be tested as well. How do you get tested? A blood test
first and a biopsy of your small intestine to follow up a positive or
questionable blood test. The biopsy will determine if your villi are flattened
and damaged. When they are damaged, you can’t properly absorb nutrients. Think
about this for a minute. You can’t absorb
nutrients. We thrive because of the nutrients we absorb, all of our organs
and our body systems need these nutrients to work properly, so if you have
undiagnosed celiac disease or have it but cheat on your diet all of the time;
you are really doing your body a complete disservice. So keep thinking about
it; CD has over 200 symptoms, because it’s affecting everything; your brain,
your heart, your gut, your reproductive system, your skin, your kidneys, your
liver…maybe you get the point or maybe you’ll have an ah-ha moment soon.
Ok so back to my story. As I started absorbing nutrients, I
started gaining weight, rapidly and not in a healthy way. It was from the
donuts, the bagels, the cookies, and the endless search for edible gluten free
pasta. I felt good though, physically. Mentally was a different story. I was truly mourning food and the
experiences surrounding food. I remember my last non gluten free meal was a
Whopper that I didn’t even finish and then I got the call from the doctor. From
that moment on, I never ate gluten again. I will forever remember that Whopper
and that real bun. How sad! I had to learn how to eat at restaurants and try to
explain to these poor unsuspecting people what gluten was and why it was so
important for my food not to be cross contaminated. I had to learn how to attend
parties and not feel like a jerk. That was tough, suddenly I felt like people
owed me at least the courtesy of remembering my new dietary restrictions (that
was my issue of just missing fitting in, not their issue). I miss birthday cake
and pizza, still to this day. I used to stand in the aisles of Wegmans as I was
grocery shopping and would call food manufacturers as I was putting food in my
cart. Navigating ingredients in food labels is tough when you are on a new
diet!
I have been debating
a gluten challenge to get the biopsy for CD. When I tell that to my
rheumatologist, she asks me, “well, don’t you feel better off of gluten?” My
answer is always yes. But I know that as little as 2 bread crumbs can damage
the villi of a celiac. I need to know if I truly have CD or if I am gluten
intolerant for quality of life. I would like to know that I might be able to
comfortably visit another country and just eat something and deal with a
consequence that won’t have a serious effect. It’s a struggle because I know a
challenge will make me feel so lousy. So for the time being, I consider myself
a Celiac and I am definitely a proponent of spreading the word on why it is important
to get tested, why it’s important to strictly follow the diet, and why it’s
important to not gluten me J
When clients come into my office with a new diagnosis, I can
honestly say I know how you feel. There truly is a feeling of loss and
sometimes hopelessness. I like to show
you how to embrace that change with confidence. I LOVE when someone walks into my office and they were told they have
a disease or diagnosis that requires a diet change and by the time they leave
they are filled with palpable hope, excitement, and a determination to make
those changes to better themselves!
MD’s (or even
friends or family members of MD’s help spread the word!) if you are reading
this PLEASE for the love of God refer your patients to a Registered Dietitian.
They need a human being to have a lengthy conversation with regarding their
diet. They cannot be given a diagnosis and sent on their way to figure it out
on their own. I have seen the consequences of using Dr. Google. It’s not
helpful in improving their health and may actually be damaging to their mental
well being for a variety of reasons.
**Need some cards or would like to chat? Please
contact me 585-563-9000!**
This is my beautiful friend Emily as she climbed her first mountain, literally! So proud of her!
