Tag Archives: celiac

2009 in Review

It’s been a busy year in our household! Here are a few of the highlights:

January: I had just graduated from graduate school and was enjoying doing nothing but being pregnant. About halfway through the month I learned my delivery plans were going to change pretty drastically. My grandfather passed away after a long battle with cancer; his funeral happened while I prepped for my c-section.

February: At the beginning of the month we welcomed Menininho. It was a complicated post-delivery, one that I hope to never repeat. We moved to California and I made my first silly new mom mistake.

March: I learned of the losses of two Marfan friends. Menininho was blessed and formally given a name. Our family came to visit. Mark was diagnosed with Type 1 diabetes.

April: A pretty boring month, but I did blog about some of my baby “must haves”.

May: We started using cloth diapers and won’t go back! Mark officially graduated with his MS. I also had the stress test that started a chain of events.

June: Mark and I celebrated our 2 year wedding anniversary. I also started a series of posts about my life with Marfan.

July: My Life With Marfan posts continued and I prepared for the annual National Marfan Foundation conference.

August: Menininho and I flew solo to visit my mom and sister. I finished up the series and went to my 4th conference, where besides working with the teens I was also one of the closing speakers.

September: My cardiologist discovered a problem with my heart and I decided to wean Menininho early in order to start a new medication. A few weeks later Mark was diagnosed with Celiac disease.

October: We had a mishap at the pumpkin patch, and then better success. I moved my blog from Blogger to WordPress.

November: I relived some childhood memories with MamaKat’s Writers’ Workshop and we got to spend Thanksgiving in Ohio, seeing all of my and Mark’s extended families.

December: The inner breastfeeding advocate in me wrote a post about a woman’s right to breastfeed and the inner patient advocate in me wrote a post about being an empowered patient. We bought a tree, spent too much time in the ER and had a failed Christmas tradition.

I want to thank all of you who read my blog, who give me feedback. I am humbled that you take time from your day to read what I have to write. I look forward to getting to know more of you and your writings in 2010!

~ Maya

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Christmas Eve

I love Christmas. I love the music. I love the crowded malls. I love the decorations. I love the FOOD. I love the traditions.

The best part about our first Christmas as a family of three was the opportunity to create new traditions for our family. Sure, it took some haggling (more than I expected) to figure out which of our respective family’s traditions we’d carry out this year for Menininho. Christmas Eve we’d drive to look at lights and open up our Christmas pajamas. Christmas morning we’d do stockings, read the Christmas story from Luke, eat our (this year, gluten free!) cinnamon rolls, sing a couple Christmas carols, and open presents.

But Christmas Eve I realized we had no Christmas Eve dinner tradition! For whatever reason this seemed totally unacceptable to me, and I pressed Mark about it. We decided that cheap Chinese takeout on the couch and It’s a Wonderful Life would be perfect. And really, this should be NO problem because we live within walking distance from a strip of Chinese restaurants.

We bundled up the baby and ventured out. Our only caveat was needing to find a restaurant that 1) didn’t use wheat in their soy sauce OR 2) had yummy dishes that used no soy sauce. Unfortunately, this was harder than we thought. For starters, I couldn’t convince Mark that it was probably easiest to ask “Does your soy sauce contain wheat?” than to ask “Do you have a gluten free menu?” A lot of people have no idea what gluten is, or may have gluten-less dishes and not know it, but not have a real gluten free menu (we’ve found most restaurants do NOT have such a menu). After about 10 restaurants it was obvious that no one understood what he was talking about, and we didn’t want to chance him getting sick.

Our backup plan was to drive to the mall, where we knew their Chinese restaurant used MSG in their soy sauce, instead of wheat. Unfortunately we realized AFTER we’d gotten Menininho into his shoulder and walked up from the back of the parking lot that the mall had closed 2 hours previous.

I ended up eating 2 cookies and a bowl of applesauce for dinner. I think Mark skipped it entirely. We’ll prepare better next year!

What are some of your holiday traditions? Did you start any new ones after you had kids?

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End of an(other) Era

Last Wednesday Mark had a milestone of his own; he ate a Wendy’s burger and chili-with-crackers for the last time.

Last Wednesday Mark was diagnosed with Celiac disease, an intolerance to gluten. Gluten is found in wheat, barley, and rye, but is also used as an additive in processed foods. No one is totally sure what causes Celiac, but it is an autoimmune disease that targets the digestive tract. In Celiac patients, the body reacts to the absorption of a protein in gluten (gliadin) by attacking parts of the small intestine, which causes the breakdown of the small intestine and difficulty absorbing certain vitamins and minerals. Mark was diagnosed because of his moderate anemia. We started the diagnostic process in March, when he was diagnosed with Type 1 diabetes, and it’s taken till now to determine the cause of the anemia.

Now, I know what you’re all thinking. Seriously? This family has ANOTHER weirdo disease? Pretty crazy, huh? Well don’t tell anyone, faithful blog readers, but we’ve decided to go for the world record in rare diseases in one family. I don’t know what the current record is but I assure you, give us enough time and we’ll beat it. Or if not, we should at least get featured on House.

I am grateful that we’ve been able to gradually slide into this. Last month Mark tested positive for the Celiac associated antibodies so we knew Celiac was a strong possibility, but the doctor gave us a list of a few other things it could be instead. Two weeks later Mark had an endoscopy/colonscopy and we got a 99% diagnosis of Celiac, but had to wait another week for the biopsy results to be sure. This gave Mark and me lots of time to research the disease, learn what a gluten-free diet would entail, and get used to the idea.

I’m really proud of Mark. He is a “foodie,” so having to give up a lot of his favorite foods is a huge sacrifice. His doctor said if he follows a gluten-free diet he will hopefully go into remission within a few months, but if he ever re-introduces gluten (in any real amount) he’ll get sick again. To that end we’re getting used to some new foods, cleaning out the pantry, and creating a better method of food storage (because I’m not going totally gluten-free). We’re also very particular about what foods Menininho eats because his immune system is still developing. If we keep gluten out of his system now, his pediatrician said we have a better chance at preventing him from getting Celiac (hard to know for sure, since the exact cause isn’t known, but it certainly won’t hurt).

Along those lines, if you’re interested in gluten-free cooking, I’ll be posting recipes to these blogs: Take That, Martha! and Healthy Eats.

I’m hoping that we can turn this bad luck into a kick-start into healthier eating for our family. 🙂

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