How Gluten Changed Her Life….

There is so many food allergies out there these days. Gluten, dairy, wheat, those are just to name a few. You really don’t think much about it unless it affects you or your family. I always thought it was something you were born with. However I could not be more wrong.  It can be made worse by stress, pregnancy and childbirth, infection and surgery.

I remember my cousin getting diagnosed with Celiac Disease a few years back after she had her appendix removed. I looked into it a little bit at that point, when she came over for dinner one night, I wanted to make something she could eat so I remember looking into certain recipes. I realized she could still eat a lot of the food I prepare for dinners for my husband and I. Then I had some stomach problems a few years back and I read more about it because I thought I would try going gluten free for a week or so to see if it helped my stomach. I remember I couldn’t eat anything without feeling sick afterwards. It made me stay home all the time because I felt so sick, I quickly became depressed. I again had no immediate answers from the doctors and I remember being very disappointed when my blood results came back normal and that was even being tested for Celiac Disease. I researched what I could eat, I made a few trips to the Markets around me visiting the gluten free isles. I couldn’t believe how expensive everything was. I bought pasta’s, snacks, baking needs. I tried this for only a week with no relief. I became frustrated and spend most of that week at home in pain night in day. I even had my gall bladder checked with an ultrasound. I never did find any answers. The pain eventually went away and I haven’t felt it since. I do know from my past that my body can’t tolerate fried foods that easily and I have to watch my fiber intake a lot.

I hope to never experience that again but since having my daughter I’ve wondered about her since she suffers from severe excema all over her body all year round. I’ve asked two different pediatricians now if it could be a food allergy and both of them said it’s likely but they didn’t think so since it gets worse in the winter and better in the summer. They said the only way I could really know if it was a food allergy was to little by little start eliminating certain foods one week at a time starting with dairy. They didn’t even guide me on how to go about doing it, maybe it’s my fault for not doing it but my daughter is a extremely picky eater and taking cheese, and yogurt away from her would not be easy. I did switch to almond milk almost a year ago which has eliminated some pretty bad blow out diapers!! I’m almost at my whits end and ready to just start this process on my own with no doctors opinions because my daughter scratches her arms, legs and belly so much at night while sleeping that she wakes up with scratches on her whole body 🙁 It breaks me heart. You have to really scratch hard to cause your own skin to bleed and make marks.

If you’ve ever heard me speak of my experiences with my dad and his cancer, my migraine’s I had through my twenties and my ongoing stomach issues I’ve had since I was a teenager you’d know that I don’t have a lot of faith in doctors. I’ve never gotten answers to my problems and if I have had any relief it’s from me eliminating foods, trying diets and doing research of my own. Believe it or not though pregnancy causes a lot of grief for people, and though this pregnancy has been a lot  different than my first, it’s still the best I’ve ever felt when it comes to my stomach issues, for some reason I have a stomach of steel when I’m pregnant and I can seem to handle anything with no problems. Not a solution, though my husband would love many more kids, it’s not happening 🙂

Sooooooooo that brings me to Kristen’s story. I met Kristen over two years ago when I had my daughter. I started attending regular Mommy groups when I had Madison. I was a new SAHM and I didn’t get out much, I had a lot of concerns parenting for the first time so these groups really helped me through some rough patches. I met Kristen through one of these groups because her Daughter Noelle is one month older than Madison. Kristen has a unique story she’d like to share with people about her battle with a food allergy. It was a long battle for her but she got her answers and has made some great life changes to better her health for her and her family. She even had her second daughter a few months ago!! 🙂

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 a happy girl.  Cake for dessert? Please!  Cookies at Christmas, of course! All of this changed in 2011, after the birth of my daughter, Noelle.

I gave birth to Noelle 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.  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 many 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.  Ceci was born just 7 weeks ago…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 could go on and on about this, but I have to save something for another day/week/month (if Tammi will have me back)!  I’m going to include my family recipe for a simple macaroni and cheese.  My grandmother and mother made this for us while growing up.  It’s not a fancy schmancy Food Network mac ‘n cheese, but it’s down home comfort food.  It was perfect for when I was recovering and it makes amazing leftovers.

Ingredients:
1 pound of macaroni (I like Tinkyada brown rice pasta…they make several shapes and all of them work)
1 16oz. block of Velveeta cheese (totally processed, but also totally GF)
2 cups milk
1/3 box of corn Chex (my family usually uses Corn Flakes, but even Corn Flakes have hidden gluten…malt flavoring)
1.5 sticks of butter

Directions:
Heat oven to 375*F. Boil water and cook pasta (al dente…it will soften in the casserole).  While the pasta is cooking, cut Velveeta into chunks.  Combine 1/2 stick butter, Velveeta, and milk in medium saucepan over low heat. Whisk until melted and combined.  Do not let it burn!  Drain pasta and put it in a medium casserole dish.  Pour cheese sauce over until it just barely meets the top of the pasta (you don’t want it too runny).  Crush Chex and toss with one stick of melted butter.  Pour coated Chex evenly over top of pasta and cheese mix.  Bake for 20 mins, until bubbly on the sides and slightly brown on top.

Well it looks delicious enough for me to give it a shot!! So I will be trying it this coming weekend!! I LOVE Mac and Cheese and stocking the freezer is a good idea! Thank you Kristen for sharing your story with us, I look forward to having you back to talk more about living with a food allergy and tips and tricks that can make any of us give it a shot!!!