By Rachel Doreian

Community Story: Candice

ALOHA,

If you read no further, I want you to know this: If you have ONE Auto-immune disorder (such as Celiac) on the average you have THREE. If someone has hypo-thyroid due to Hashimoto’s, you should automatically be tested for Celiac. I wish I knew this years ago…

My Diagnosis Story:
I’m a 50-year old woman at the time, 160 lbs and healthy. I had been a Firefighter/Paramedic for 14-years, I’m very strong, I keep up with the guys, no problem! I start gaining weight for no apparent reason. I decrease calories to 900/day, increase exercise. Still gaining weight.

I try Nutrisystem. The food makes my stomach hurt and I gain 10 more lbs.

I work with a tough personal trainer 3x week for one full year, I get weaker and weaker. Instead of gaining strength and muscle, I do less and less repetitions every month, I gain even more weight. I’m so exhausted after working out, all I can do is rest afterwards.

I decide to go to a world-renowned health center in San Diego. Wheat Grass consumed in every bodily direction, fermented stuff you drink, vegan/raw diet. 30-days later, my skin is fabulous but I gain 15 more lbs.

A 21-day FAST (no food at all) “Master Cleanse” Lemon Juice with a little maple syrup- I lose 1-lb AFTER not eating a bite for 21-days? “OK, THAT’S IT!” I say to myself. “I’m pushing 200 lbs now, I’ve gotta do SOMETHING.”

Off to a “Biggest Loser” type program near Salt Lake that is overseen by the physicians of The University of Utah, Exercise Physiology Department. Extensive baseline testing with the latest equipment measuring metabolic rates, precise body fat & composition etc. 30-days living in a strictly controlled environment. A controlled 1200 calories/day. I burn 5,000 calories/day, 6-days/week, exercising 12 hours/day. At the end of a grueling 30-days, the physicians re-test to compare to your baseline. I GAINED 3% body fat, LOST 8% muscle mass and only lost 2-lbs. How is that possible? They accuse me of sneaking out at night, getting a cab and going to the grocery store. Wow, not true.

I go home, data in hand, (and obviously, extremely exhausted) and see my favorite endocrinologist. At least HE knows I don’t cheat. A week later, he tells me I am severely malnourished, numerous vitamins deficiencies, sky high lab numbers for Celiac. Two EGD’s later… (2 Because the GI physician says “OH, I didn’t know I needed to get biopsies for a Celiac diagnosis”) Late Stage Celiac, Marsh 4. My intestines will never heal, too far destroyed. They also want to remove my large intestines due to extensive diverticulitis disease. (NO, I don’t think so!)

That was 5-years ago. I’ve had several more auto-immune illnesses show up, but that’s just the nature of the disease.

The Bottom Line:
Most physicians think of Celiac is a “wasting disease.” Well, that’s not true. About 40% of people with Celiac are like me. My body was starving to death so it converts muscle into fat. When it takes all the nutrients it can from the muscle, it starts sucking the nutrients from your bones. A big woman like me shouldn’t have osteoporosis, but I do. Every diet, every exercise, every attempt I made to lose weight (obviously, many) was damaging my body more and more. My unrelenting determination is the reason for the degree of the damage. WOW!

Even now, years later, and 240 lbs. it still doesn’t matter what I eat, my body simply converts it to fat. In fact, the only way I lose weight is to EAT MORE! This disease is CRAZY isn’t it!

I live in Hawaii, we are 10-years behind the rest of the country. Most grocery stores don’t have any Gluten-Free” section. You’re lucky to find a gluten-free protein bar. Most all restaurants say, “What’s Gluten?” That’s why I HAD to become my own expert!

I cook from scratch, every day, I have to. It’s not that hard anymore. I really miss bakery items- I would kill for a cupcake, any cupcake. I’m no baker but I’ve had to learn. My biscotti is incredible!

Please don’t think this will happen to you. I write today to make you aware how serious this disease CAN be if not diagnosed and treated effectively. Make sure you have a great physician who understands the disease. It’s really no big deal learning to live with it. It makes you eat better, cleaner food and if you have a family, they too will eat much better. In that aspect at least, it’s not so bad!

Best Wishes and Mahalo,

Candice Phillips
Kailua, Hawaii

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