Life Changing News

 December 28, 2021

Well here goes nothing, people seem to believe that documenting one’s journey is a vital part of one’s experience. Especially in being able to look back and see how far one has grown. Guess I will start with the basics. I’m 32 love (specific) food, and over the last few years have built a 4-inch binder full of medical tests to try and determine why I’ve been feeling horrible 98.5% of the time. Back in November, as families were planning their Thanksgiving travels and meals, mom made the 5-hour trek to McLean, VA to attend yet another medical appointment with me. This time it was for rheumatology with Dr. Sepehr Mesdaghinia at NOVA Arthritis: Rheumatologist, one of the few MDs I see that I like and trust. That day, on Wednesday, November 10^th, 2021, I felt like my world was falling apart and honestly at times it still feels that way. Dr. Sepehr told me that there was no more trying to limit my gluten intake. I needed to be on a 100% gluten free diet and work on minimizing my lactose (dairy) and sugar intake. My world crumbled for two very specific reasons to me. 1) The last few years I’ve struggled to be able to keep food down and eating things that didn’t upset the multitude of gastro issues I’ve been diagnosed with and 2) my main diet is/was carbs, dairy, carbs, dairy, sweets. My family is fluent in baking desserts and now going into the holiday season I’m being told that I need to not eat the frequent versions of carbs I can barely stomach but all those delicious cookies, pies, brownies, etc. are going to be present and just out of reach from now on. This is why I ask a parent or sister to come to my appointments with me. Me and change do not get along, nor do I process information quickly or well.

Mom and I walked out of the appointment, and before I got out the door of the office building, I was crying. Pulled myself together only to cry again. How was I going to be able to eat, what was I going to eat? (I’m not so dramatic to think it couldn’t be done, just unsure how I could handle it.) Thank goodness for Moms! Firstly, mom realized my brain processed what Dr. Sepehr said as No Gluten, No Dairy, No Sugar, instead of No Gluten, Minimize Dairy, Minimize Sugar. This might seem like a minor difference and originally it appeared so to me. However secondly, mom suggested we start gradually. Start by finishing what I already had in my kitchen, as I’m on a limited budget and live life based on where I am in relation to the next payday. Even with this I was broken, let’s just say it was a good thing I had my weekly counseling session already scheduled for that night. As with living on ones own, mom helped me figure out a day or two of meal ideas and she headed back home.

Step 1: I struggled, I drowned, I cried, and even tried to bribe myself (which never works). With the help of my awesome psychologist, I found a food nutritionist. Now pre-pandemic I worked with a food nutritionist/therapist for other reasons which can be discussed later, but because of pandemic reasonings we had to stop appointments. So, an appointment was made for the week after Thanksgiving, and I had an ounce of hope things might just get a bit better. Additionally started looking at the gluten-free section in Giant, and oh my goodness! Flour is not only super expensive, but what kind am I supposed to get/use? My eldest sister talked to some of her friends and ordered some to have it shipped directly to me.

Step 2: Have I mentioned: thank goodness for Mom! I went back to NY for Thanksgiving and mom did everything she could to include me in the “normal” Thanksgiving foods for our family. Three cheese vegetable medley – pull some out before adding the breaded onions (which is a part I don’t like anyway, score one for this requirement). Gravy – thicken with cornstarch instead of flour. Pumpkin pie – sure, how does crust-less sound (just means get to eat a bigger slice!). Mom also made me homemade bread so I could have sandwiches.

During this time, Mom also contacted a family friend who does gluten-free for a family member who has celiac disease, and she has graciously answered questions and shared a recipe or two. Mom made pizza for dinner one night to give me a bit more hope that there would still be things I could eat. I was feeling pretty good, thinking going into Christmas that I managed since the Monday before Thanksgiving without being hungry, and gluten-free, but we did have a goof. We realized when prepping for Christmas that one of the other ingredients in the Three Cheese Vegetable Medley had wheat in it. Not too shabby though heading into Christmas Eve, for someone wondering if they could last a week let alone two!

Step 3: Speak with the nutritionist, virtually (Dec. 1^st). This in my opinion did not go well. She seems like a very nice woman who could be wonderful at her job. However, her approach completely overwhelmed me and all the positives from Thanksgiving went right out the window. Got off that call and immediately called mom and dad asking if dad could come and help me for the next week. Even looking back on that call, I feel the anxiety starting to build within me.

Dad came down for a week to help me adult (not always the best at it, especially when panicking) and he joined me for the follow up virtual appointment. Dad agreed that she is extremely competent and knows her field, however our personalities do not mesh in a positive manner that I would be able to find the support and help needed from working together. I think this is important to understand. I’m not giving up on getting the help I need nutrition wise, there is plenty more help needed than just being gluten-free, but as finding a psychologist took multiple attempts, so can finding the right nutritionist.

Well to bring this up to date, there was a minor issue on Christmas Eve. Went to mass and received communion. Unfortunately, on the way home started to feel ill, and my sister goes, does the communion wafer/Jesus (we are Catholic) have gluten in it. The answer to this is typically yes. My dad (the parish Deacon) didn’t think about this, nor did I a former alter server who would pull gluten-free hosts for some college classmates when they’d attend mass. Well, lesson learned and will be going to speak to my priest upon my return to VA. As for those Christmas desserts I was worried about missing out on. Mom scaled back drastically this year (prior years included 22 types of cookies, 2 pies, cheesecake, multiple fudges, and brownies) to a few key cookies, one fudge, brownies, cheesecake, and pumpkin pie for those without dietary restrictions. So, I didn’t miss out though mom made a separate batch of chocolate chip cookies, rainbow cookies, and gingersnaps for me. Cheesecake with gluten-free graham cracker crust, brownies with almond flour and another crust-less pumpkin pie. I lucked out in the mom department when it comes to support and helping me find ways to deal.

I’m thinking this is a long enough intro into just how overwhelmed going gluten-free is to me, and how even after a month I truthfully haven’t come to fully accept or embrace it. Please understand that to many this may not seem to be life changing or shattering news, but to me, especially at the time and the days, weeks and months that follow, this is definitely life changing. Things are confusing, there is so much I don’t understand and so many questions I have. My hope is to develop some cheat sheets, learn the differences in the types of flours and uses, and figure out how to go back to one of my favorite hobbies of baking while being able to eat the outcomes. Here goes nothing!