**Please read this first**
Join me and my rambling observations and insights about food and living life gluten-free. I love everything about food...eating it, creating it, looking at it, reading about it, so when I learned I had celiac it became an even greater challenge and lots more fun. My gluten-able husband, M, and daughter, Z, live happily in our 100% gluten-free home. I also write for examiner.com and celiac-disease.com. I would love to hear comments and feedback, and like all of us living gluten-free, I am constantly learning everyday. I am not anywhere close to being a doctor, a paper cut makes me wince, so please don't take any of my opinions as medical fact.
I guess I should give a rundown of my celiac past. I have never had to watch what I ate before, I love exploring and trying out new things from the random little bakery around the corner or the quirky Middle Eastern deli. I bought it, I ate it, no questions asked. I never gave food intolerances or allergies much thought. There was just no reason I ever thought I would have to. Sure, I had the common seasonal allergies, but that was it. I would always joke that I had a stomach of steel, because it was rare that something disagreed with me. I had my daughter in the spring of 2005 by emergency c-section due to severe pre-eclampsia and HELLP syndrome. I recovered quickly and felt great, but I would joke that the doctors must have put my intestines back in the wrong way, because since then I would easily get really bloated. I just assumed that is what it was and went on with my day. Then the weekend of Thanksgiving 2008 I had my first case of heartburn, this was not even something I experienced when pregnant, so it was totally new and freaked me out a bit. I figured it was from all the food I had eaten that weekend and cut out all heartburn causing foods, and it helped, but it would come back occasionally, so a couple of months later, I mentioned it to my doctor at my annual physical. She also brought up that I had lost a good amount of weight (gee, isn't this a good thing?!), and have a history of low iron. She mentioned that she was going to test for gluten intolerance, and I actually laughed out loud at that telling her how I bake like crazy, and I am fine when I eat all my baked goods, so there is no way I could have a problem with wheat, let alone gluten!
I called the nurse two weeks later to get my results after not hearing from them. I figured if something was up, I would know by now. The nurse tells me everything was fine, however, I tested positive for the h.pylori bacteria and to call the pharmacy for some meds. She is about to hang up the phone when I then ask how the gluten test came back. She says, "hmmmm.....let's see.....oh yes, it says positive for celiac". I was beyond shocked, and asked her to repeat it. I was thinking, so what do I do with this piece of information now??? I asked what I should do about it, and she replies that I should avoid gluten. Oh great,thanks! When I got off the phone, I broke down crying hysterically, I couldn't believe it, I have a diease, I am going to die! My life will never be the same! How as this happening to me??!! I immediately called my husband and my mom. Being the worrier that I am and my self-inflicted censorship of medical sites, I was terrified to even look up celiac disease and see what my chances of survival would be.
I made an appointment with my doctor to discuss the whole h.pylori issue and my refusal to take all the meds she ordered for me. 4 different meds, including 2 different antibiotics to be taken 7 times a day for 2 weeks. And being allergic, already, to 3 different antibiotics, I couldn't imagine this having a good outcome. Not to mention that all of these meds would probably make me feel worse rather than better. She also confirmed I did have celiac, and I said I wanted a second opinion about both from a GI specialist. In addition, I discovered I had a B-12 deficiency and started taking injections weekly and was tested for pernicious anemia (key word here..pernicious...deadly so you can imagine my state of anxiety at this point...it ended up being negative, I also learned pernicious anemia is fine if controlled). I went to the GI and basically he said that without doing the biopsy by endoscopy, he could not really tell me anything. Thanks Doc! I denied the procedure, basically because I already had the bloodwork saying I have it, and was terrified to have it done. We agreed, I would go gluten-free, and I would see how I feel in 3 months. My daughter's birthday was coming up, and I had already planned this amazing princess cake to for her party, and didn't have time to learn how to make a gluten-free version, so I gave myself 2 weeks until I would go completely gluten-free, the day after her party, cold turkey...just like that.
I enjoyed that cake for my daughter (Z), it was pretty amazing. A homemade pound-cake in the shape of a princess skirt with a princess barbie sticking out the top, and she loved it. It was the highlight of her day. I also indulged in some tasty pizza and then after midnight, it was over. No more gluten for me.
I decided, if I was going to do it, I was going to do it right, and the entire house was going gluten-free. I do all the cooking, and food shopping, so it seemed only fair to me, and my husband (M) was supportive. I gave away all of my fancy flours and other products I could find....herbal teas, sauces, spices, pasta, and on and on.... I also went through my lotions, shampoos, cleaning solutions and make-up. I emptied every cabinet and drawer and scrubbed them down. I gave away my favorite cutting boards, strainers, Krups Belgian waffle maker and wooden spoons to charity. I bet someone is really enjoying that waffle maker now!
It was really difficult in the beginning....learning everything that contains gluten (and still learning), and being around people who could eat everything they wanted, and watching them with envy. Being at parties and get-togethers, and not being able to enjoy what everyone else can enjoy. I felt bitter and resentful those first few months. It didn't seem fair....I was always so careful about what I ate, bought organic, didn't eat crap preservatives and junk-food, and now to add this to it. The good thing about me being so paranoid is that after reading what untreated celiac can do, I knew I would never touch it again, no matter what! I am way too careful about what I put in my body to mess with it intentionally.
People will always ask me if I noticed a difference after going gluten-free, but the truth is, I didn't really feel bad before...well until the heartburn started, so I pretty much felt the same. I have always had good energy, I didn't have the D word that is common with many celiacs, or bad skin, or many of the other common symptoms. However, the heartburn did go away and I was no longer bloated. And unfortunately for me, I started gaining back the weight I lost. I finally gave in and did the endoscopy, just to make sure there was nothing else going on, and finding out for sure if I had h.pylori. It was actually pretty easy, and was kind of like a much-needed deep nap.
The result...yes, I have celiac. No, I don't have h.pylori....I was so thankful I didn't take those meds I was ordered to take! The injections of B-12, turned into daily oral vitamins, and that went back up as well.
I decided to go to someone who was an expert in the field, and met with Dr. Kupfer at the University of Chicago Celiac Disease Center. It was so nice going to someone who really knows what they are talking about, because even your average GI doesn't know that much about celiac. I brought all my records, my biopsy slides, and again...yes, I have celiac. But this time, I had a list of questions and knew she would be the right person to ask.
This past year, I took it upon myself to research celiac and gluten-free living endlessly. My cell phone is my new best friend. And my own personal mission has been to bake and cook foods that taste better than their gluten-filled doppelganger. I have had some misses, but overall, I have been extremely excited how good everything tastes. I just need to stop eating so much of it. I feel much better about being at parties and get-togethers, it can still be a little rough, but nothing a glass of wine, or a strong mojito can't heal.
I should also mention that I am technically a pescatarian....the only meat I eat is from the sea, so when you add this to a GF diet, being at a BBQ or party can be even more daunting, but I will admit, I gave in and had a bratwurst a few months ago, and while it goes against so many of my beliefs, that bratwurst tasted so, so good! 99% of my cooking is vegetarian, and even some of it vegan, which is completely unintentional as I could never cut out the dairy....well, until I am told I have to.
My house is now 100% gluten-free, and when we have people over for dinners or parties, I ask that they bring drinks and leave the food to me. The last place I want to worry is my own house.
This past year, I have had the pleasure to write for two great web sites about living gluten-free, Examiner.com and Celiac-Disease.com. I have met so many people, so far, on my journey who have been incredibly helpful and kind. It is such a comfort to know I am not alone in this and awareness is growing among the general public.
Of course there is more to life than food...but hmmm...is there really? I also love traveling, road tripping, snowboarding, hiking, music, gardening and European soccer....and my favorite thing of all, even above cooking, is my daughter, Z.