Sunday, April 3, 2011

Surprise Diagnosis: Celiac Disease

I don't know even where to begin with this post, the past week has been a whirlwind! In that time I was diagnosed with Celiac, had multiple tests, revamped my kitchen... and the list goes on!

To start at the beginning, over the last few months, I've put on some pounds. At first I thought they were Christmas pounds, from parties and being in Idaho enjoying food and drinks, but they weren't going away. No matter how many days I counted my calories, got in extra workouts, took the stairs at work, ate extra vegetables, the scale was not going in my favor. The weirdest thing was, all the weight was in my belly, and I usually gain weight in my face first. My clothes were not fitting well, and I felt like my mid-section was a bloated whale belly.

It came to a head about a week and a half ago when I hopped on the scale that Friday morning to see how my week's worth of strict eating and working out had payed off, to see I'd gained three pounds. WHAT?!? In total I had gained 12- 15 pounds since our wedding last June, depending on the day. This was NOT normal.

So, called my doctor, she wasn't in, and made an appointment with another doctor. I thought maybe my thyroid was acting up, because my mom and brother both suffer from Thyroid disease, but after googling "unexplained weight gain" I found some resources saying Celiac Disease, the allergy to Gluten and Wheat, could be the cause.

Luckily, I have a great resource in this area, my friend Amy who's daughter, brother and father have Celiac and she runs the blog the Savvy Celiac. When I told her my symptoms and asked her if she thought I should be tested, she told me that for sure I should be.

The doctor I saw (not my normal one) was hesitant to test me, saying that most people who have Celiac, lose weight not gain (a total myth I've learned), but I insisted that he test me, if only for piece of mind. I've learned from past experiences I have to be my own advocate in the doctor's office, and I don't pay my insurance premiums to not get what I want. After all, I may be the patient, but that also makes me the customer.

That following Tuesday I received the call, saying I had tested, "very positive" for Celiac. That a normal test was under 20, and my test read at 132. WOW! I was so glad I stood my ground and got this test, it was a simple blood test too.

Since this call, it's been a whirlwind, for both Ben, and I. I've met with a Gastroenterologist, had more blood tests, an upper endoscopy that involved a biopsy of my small intestine, and been to Whole Foods more times that ever before in a matter of a week.

I'm finding so many helpful resources, and often feel overwhelmed. I cried over my last gluten filled meal, a Punch Pizza last week, thinking of the lovely foods I would miss, and the life change ahead, but honestly, if cutting out Gluten and Wheat makes me feel better, that's all that matters.

The doctor told me over the next few months my energy will improve, my weight should go down as my body is able to absorb more nutrients, and I should just all around feel better. Yes to that!

I won't go on to explain the specifics of Celiac, but here is a link if you want to learn more. Don't be afraid to throw this blood test into the ones you already receive at your annual physical, it doesn't require much (maybe a few more drops of blood drawn) and could help improve your health immensely!

So, now a new journey begins for me. Full of rice flower, special menus, more fruits and veggies, and immersing myself into the Gluten Free Community. I promise this will not become a Celiac niche blog (we have Amy for that--she's got that down!) but still about healthiness and other random crap, although sometimes that will include Celiac. Thank you all in advance for your support!


MollyinMinn said...

Wow, my friend, what a week. But so good to have answers. Please do share what you learn along the way.

Misty said...

My daughter has celiac, Im glad you figured it out quickly

Our biggest problem has been sandwich breads so far the best commercial one we have found is Udi's (whole foods has it) they also have a ton of other yummy goodness!

you can do it

I even take GF treats for everyone now when we have family gatherings and no one even knows...Christmas they got GF Sausage balls and GF all disappeared and was yummy!

Suzi said...

So happy you are on your way to better health. I've been reading a lot on Gluten Free diets and will also check out the links in your posts. :)

Kerrie T. said...

Wow. Glad you pushed for the test. A good friend of mine, who had health problems for years, was diagnosed...well, many years ago now. She was one of those that never gained weight. But she also discovered she has multiple other allergies in addition to Celiac Disease.

I'm sure it will be a big lifestyle change, but to feel better will be your reward!

Kelly said...

I too have Celiac, it's quite the journey! My diagnosis was in December and I had very similar situation. You may find that your stomach doesn't handle a lot of processed foods, even if they are gluten free. I have eliminated dairy (temporarily) and most prepackaged foods. Good luck! (Cub has a lot of gluten free products, the one in St Anthony has a big selection.)

Kristi said...

I'm glad you were able to figure out what was going on with you... great job on standing your ground. We know out bodies better than the doctor's do.

Tasty Eats At Home said...

I too can no longer eat gluten, and it has been a journey. But let me tell you... You will adapt. You will not only adapt, but you will find foods you wouldn't have considered trying before, and some will be delicious! Contact me if you have any questions - I know it can be overwhelming but you will get there and things will become second nature over time.

Ann said...

I have a question - were you FEELING bad? Like, low energy, tired, stomachache? That's crazy about the Celiac Disease, and I'm appreciative of your positive attitude about it!!!

Elle said...

Wow, Alexa, that's huge! So glad you found an answer so quickly - think of all the fun new kitchen adventures you'll have! Can't wait to cook with you again...

Jen, a priorfatgirl said...

I am so interested in hearing more about your journey through this. I don't have Celiac disease but have been paying more attention to just in general, how food makes me feel. I am about 85% off processed foods since October and about 50% on organic in the past month.

Kate said...

What a story! So glad you insisted on that test.

I sure hope you understand that being a Celiac is in NO WAY living with deprivation in what you eat. These days especially, with the amount of people diagnosed with celiac disease, the availability of information and the level of knowledge about it, the resources for amazing foods are vast and incredible. You will not be deprived, but it is a new learning experience.

My good friend Angela has been gluten free for the past 10 years, and teaches GF/CF classes at Lakewinds Co-Op. She also has an extensive blog with tons of amazing recipes, techniques and abilities. You will find more recipes there than you care to think about, along with spot-on information about living GF.

Please go visit her:

You will be very happy that you did.

Elise said...

thats a doosie of a diagnosis to get. glad you're figured it out though -- and that there are TONS of options out there for you. the world is much more gluten-free friendly these days.

it will be a hard adjustment, but just knowing how much better you'll feel gluten free (i'm dairy free) will make it all worthwhile :)