As part of Celiac Awareness Month, OAMM Staffer Lisa shares her story of her diagnosis of Celiac Disease, as well as the roller coaster of emotions and feelings that follow .
As I write this second in my series of posts for Celiac Awareness month, I am on the couch. Sick. Again. For those of you living with or have a loved one who has been diagnosed with Celiac Disease, you know where I am. The smiling, energetic mom in the picture is not here today, she has been replaced with exhaustion, dark circles under her eyes and hair that is in desperate need of a wash.
Sick, again
The pure exhaustion and fatigue hit me like a ton of bricks after I take my morning shower. I rest on the bed for just 10 minutes I think, and wake up two hours later. My whole body aches, my stomach is a digestive mess, and the brain fog…how can I even explain the fog? I have a warm cup of Organic Roasted Dandelion tea with a heaping teaspoon of grass fed gelatin on the coffee table. Long gone are my mornings with coffee and creamer. The beloved Diet Dr. Pepper that would keep me company in the afternoons is replaced by home brewed kombucha. My end table is littered with books – The Paleo Approach, The AIP Cookbook, Fermented – to name a few. I’m in full “crunchy mode” as my kids call it. These books have not only become tools for my healing, but have become dear friends to me as the months of fine tuning my diet roll by. There are still those days where the exhaustion sets in, I crawl on the couch, wrap in my blankets, with my furry socks and my fluffy sweatshirt that I mourn and grieve and cry – yes cry – about the loss of some of my favorite things. Coffee, Diet Dr. Pepper, wine, and yes even exercise. 
Connecting the pieces to the puzzle
I am cold, wrapped in 2 blankets, even though it is almost May. Apparently my thyroid condition lends to hands and feet being cold. I thought that was normal. There are so many things, as I look back, that I just assumed were a normalcy, and pieces of the puzzle fall into place. Chronic sickness, adult onset allergies, slight dairy intolerance, daily naps, the list goes on. It amazes me all these years and sicknesses were just the beginning. The depression, anxiety, and even my hormones can all be in some way linked to my Celiac Disease.
Stocked freezer = Saving grace
My kids are to arrive home in less than a 1/2 hour from school. I haven’t left the couch. They are boys. Growing, hungry teenage boys, what do I feed them for snack? What is the plan for supper? My husband is an amazing man, but a cook he is not. I breathe in a sigh of relief. Remembering my freezer cooking day last month with my sister, mom and newly diagnosed Celiac aunt, resulting in a well stocked freezer. I venture up to pull out some cookies (I have learned to always make a double batch and freeze half), some soup for myself, and meatballs for the family. I notice I am almost out of bone broth, I additionally ay out some soup bones to hopefully make a big batch tomorrow (praying I am up to the task). And I am exhausted again. As I mentioned before, with the swappable menus I can now take recipes that fit within my Celiac and thyroid guidelines and make my perfect menu. Not to mention a few snacks added for treats for the whole house! Freezer cooking has been our saving grace through these last few months.
Showing and receiving support
This was a hard day and there will be hard days you can’t control. I want to let YOU know that you are not alone. Your struggles are probably very similar. Your ups and downs are normal. Your grief over loss is okay- loss of favorite foods, days in the month, potlucks at church. Struggling through telling your child they simply cannot have food friends bring to school. Making them ask the hard, and sometimes embarrassing questions of “What’s in that food? Does that have gluten?” We are in this together, to support each other, and to spread awareness about Celiac Disease. 
If you are the friend or family member of someone with Celiac Disease, be their support. Be understanding when they have to decline from a happy hour get together, or a Saturday morning walk around the lake. An encouraging text message, or even old fashioned card in the mail are huge pick me ups on the hardest of days. Find non-related food gifts or tokens of appreciation for the kiddos. Maybe a set of coloring books or mad libs from the dollar store. My support often comes from blogs. Reading posts, stories, and struggles of fellow Celiacs validate the feelings I am overwhelmed with. When I need a pick me up, you can find me scouring one of these sites:
You can also find us on our Facebook page, leave a comment below or email us! *This post contains affiliate links. (Celiac Disease Symptoms – Courtesy of Gluten Dude)
3 Comments
Join the discussionyour experience sounds like what I struggle with being diagnosed with fibromyalgia. No one understands the prison “being tired” keeps you in unless they’ve experienced it. Most people just consider me lazy. I’m in the process of trying to change my diet, hoping to get some type of relief and normalcy back in my life. thank you for sharing your story.
Lisa – The prison of being tired – I totally relate! I recently started an AIP diet to hopefully do the same. We would love to have you join in our Community page on Google+ as well! https://plus.google.com/u/0/co…
I have been GF for 8 years. I am 53. It changed my life. But not enough. I still nap everyday no matter how much sleep I get, sometimes once a day, sometimes twice a day. I hesitate to say I’m exhausted bc I know exhaustion. I remember wanting to go back to bed every morning after waking up. I get accidently glutened perhaps once a year and cross contamination happens about as often. I have no other issues such as problems with the thyroid. Is this what normal 53 year olds feel like? Get off my lawn!