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Nutrition Care of Rochester Dietitian Nutritionist

Specializing in the health of women and children.
(585) 563.9000

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 and beer. 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 am SO grateful that they have developed the health buttons indicating what is gluten free and what isn't. Talk about a life saver!

 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.

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!**

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