The Beginning of the Beginning

I love food.  I've always loved food.  Especially delicious stuff like cake and cookies and pies.  Growing up with my grandmother, a retired baker, living downstairs, sparked this love of everything sweet, cakey, and covered in frosting.  She not only made baked goods, but I spent a lot of time cooking and baking with her and learning all of her secrets.  For the first 29 years of my life, it was easy to eat all of this gluten-filled goodness.  I'm not a huge fan of vegetables (other than salads, green beans, and a few other fake veggies like squashes and sweet potatoes), and have spent most of my life being a meat and potatoes girl.  Pass me some pasta, or maybe a casserole and I'm happy. Cake for dessert? Please!  Cookies at Christmas, of course!

All of this changed in 2011, after the birth of my daughter, N.

I gave birth to N in September 2010.  It was a fairly easy pregnancy, but the labor was long and difficult. The first few months after were particularly tough because she had reflux (due to a dairy intolerance) and was generally pretty high maintenance as babies go.  I was fortunate to have the first year of her life off of work and home with her.  I was proud that I had made it through the first 10 months or so breastfeeding and had planned to wean her over the summer to prepare to go back to work at the end of August.  In June and July I gradually started nursing less and giving her bottles of goat milk to get her used to what daycare was going to be like.  I was admittedly stressed about not only this process but also the impending doom of work/daycare/commuting, etc. etc. This is when thing started going downhill.

I remember it clear as day.  It was like a switch was flipped. On an early July morning, I went for a walk with friends.  I felt shaky and nauseous and my heart felt like it was pounding out of my chest, but I couldn't figure out why.  I wasn't particularly nervous about anything, why did I feel like this?  I took some homeopathic chill pills, but they didn't help.  This feeling continued through the week and it worsened.  I started getting terrible headaches, rib pain, back pain, neck pain, jaw pain, fatigue, and dizziness.  The anxiety continued--partially because I was sick, and partially because I was worried about what I was sick with.  I attended my friend's birthday party in Rhode Island that weekend and felt shaky and sick the entire time.  What was wrong with me?  Was I dying and didn't know it?

The worse incident I had was en route to a friend's house in New York.  On the way, I was having heart palpitations and terrible rib pain.  My left arm went numb and I thought for sure I was having a heart attack.  I begged my husband to pull over on the highway.  We called 911 and I was brought via ambulance to a hospital.  The EMT told me it was probably just an anxiety attack (which I know now) but since I don't have a history of anxiety or panic, how was I to know what was happening to me?  This ER visit was just like the rest--bloodwork, CT scans, heart monitoring--all normal.  All normal?  How could everything be normal when I was feeling so terrible?  While I was scared for myself, I was even more scared for my 10 month old baby girl--what if I had a terrible illness and would never see her grow up?

When we got home from NY, my husband (who was just as scared as I was, but strong enough not to show it) did everything he could to get me help.  My primary care physician insisted that I had post partum depression (PPD) and that some Prozac would fix it.  I didn't feel comfortable going on Prozac while breastfeeding at the time (although I know now many people do it safely), so I did not start taking it.  We called various doctors, counselors, and postpartum specialists.  Again, I was handed prescriptions for Zoloft and Ativan and told it would help since I was probably experiencing PPD.  At this point, I decided to heed their advice.  I weaned Noelle completely and started medication and visiting a counselor.  Nothing worked. Not one bit.  Still felt all of my symptoms, and it was getting worse.  I was losing weight, battling reflux, and feeling more fatigue and joint pain.  I had to go back to work like this, teaching 120 eighth graders, how was I going to get through my day?  I remember sitting with my coworkers at lunch on more than one occasion just trying not to completely burst into tears because I was feeling so miserable.  I felt like if I really told everyone what was going on, they might think I was crazy.

I knew there was something more to this story.  I had a strange bug bite back in May, maybe it was Lyme?  I was tested for Lyme with inconclusive results and started seeing a specialist in Concord.  He prescribed high doses of antibiotics and I took 20 or so pills a day for the next 5 months.  This treatment brought me little relief as well, and in fact left me with a destroyed digestive tract at the end of it all. 

We went to Disney World the day after Christmas (2011).  I love Disney World, but I was too sick to enjoy it.  I was having all of my daily symptoms and the fatigue was too much.  I remember feeling like I needed to pass out every night between 6-7pm.  My sister-in-law was with us and 5 months pregnant at the time, and she had more energy than I did.  I suffered through the next two months, coming to grips with the fact that I was going to feel this way forever.  Eventually, in early March, I hit my breaking point.  I found a new primary care physician and I remember crying my eyes out in her office.  She looked through my history and assured me that we would figure this out...no matter how many tests we had to do.  She tested me for a variety of things--including Lupus, Celiac disease, vitamin deficiencies, and much more.

Two days later, I got the news I had been waiting for.  I had something.  It had a name.  And I could fix it.  My gluten antibodies (anti-tissue transglutaminase antibodies) were off the charts.  I was told anything over 15 was considered positive and my numbers were over 100.  I was told to stop eating all gluten immediately and that I would be scheduled for an appointment with a nutritionist and a gastroenterologist.  I stopped eating gluten completely and within 1-2 weeks, I felt MUCH better.  Not only did I have antibodies (and probably significant intestinal damage), but I was deficient in many vitamins too--which was causing some of my symptoms.  It took a solid month or so for me to feel 100% by eliminating gluten, but that was all it took, a month, and no gluten.  No heavy antibiotics or antidepressants.  Just a dietary change.  Easy, right?

Eliminating gluten is a MAJOR dietary change.  Not only does everything seem to be made of gluten, but many foods are "contaminated" with gluten.  Anything containing wheat, rye, barley, and malt contains gluten.  The more research I did, I realized that eliminating gluten was difficult...especially during social events and while eating at restaurants.  Gluten is EVERYWHERE and unless you are the one preparing meals you can never be 100% sure something is gluten free.  I will also say that other Celiacs have been very helpful in suggesting products and restaurants.  One of my coworkers reached out to me immediately, sending me a Google Doc full of websites.  She also wrote a list of all her favorite products.  I still keep it in the center console of my car for quick grocery shopping reference.

After my diagnosis, I visited the nutritionist who handed me a pile of printouts from the Internet.  It was then I realized that this was trickier than I thought it was going to be.  I mean, if the hospital nutritionist didn't know anything about Celiac, and had to read Internet printouts to me, it's gotta be difficult. I immediately went to the "gluten free" aisle at Hannaford and stocked up on as much as I could...some from the list, some things I tried on my own.  I've come to the realization, that just like anything out there, you will find the good and the bad and decide what you like.  I now have favorite pastas, cereals, snacks, and more.

One of the major ways I have eliminated gluten is by taking my family recipes and de-glutenizing (if that's even a word) them.  My mom has been really instrumental in this.  I should mention that I felt so good after going gluten free that I had enough energy to get pregnant again (wink) and have another baby.  In fact, the only reason I did not end up with an endoscopy to confirm the diagnosis was because I found out I was pregnant the day before the procedure was scheduled. C was born in January at a healthy 10lbs, 5oz.  Clearly, she didn't miss the gluten while I was pregnant. :) Not sure of what the hospital would have for GF food, my mom made individual portion sizes of some of our family favorites.  I was able to bring these with me to the hospital and put them in the fridge so I always had a backup plan.  Both my mother and mother-in-law have been amazing at modifying family dinners for me.  It's awkward when you've never had an allergy/intolerance in your life and then all of a sudden you need to make special accommodations for meals.  My family and friends have certainly made this transition a lot easier for me.

I am starting this blog to document some of the delicious foods I make and eat.  Many friends have made contact with me to gather information about going gluten free.  I usually send the same form e-mail, occasionally modifying it depending on who the recipient is.  I post pictures to Instagram of my meals and baked goods and often get asked for the recipes.  In writing this blog, I will be able to share photos, recipes, restaurant fails/successes, and more.  Although I am good at being gluten-free at home, I still have a difficult time at social events and restaurants.  While many restaurants try to make accommodations for gluten-sensitive people, the process and the product aren't perfect yet, which can leave me in awkward situations (or sick for a few days!)  On the other side, there are restaurants that have mastered preparing gluten free meals in a delicious way that doesn't make me miss what I used to be able to eat.

Please feel free to comment or contact me if you have any questions about anything I write, I am more than happy to discuss and share!