Aug 8, 2018
I have celiac disease and didn’t even know it.
Most of you probably aren’t fully aware of extent of my gut issues over the last 5 years because I don’t really share that part of my life. It’s definitely not the most glamorous thing to talk about! But it’s real and it’s my current reality. So I wanna be real with myself and all of you too.
For the past half decade, I have felt ill more times than I could count. From tummy aches to gas to reflux to diarrhea to constipation, to literally being afraid to eat anything. I’d always need to know where the nearest bathroom was, and travelling just seemed so scary…Not to mention campsite bathrooms, Ugh! My closest friends and family have seen first hand the changes in my weight and eating habits. I’ve tried juice cleanses, eliminating lactose, eliminating alcohol, even veganism. I blamed my symptoms on anxiety, or a tummy bug or too much acidity in the foods I was eating. Too much decaf coffee, or too much sugar. I was even starting to convince myself it was all in my head. But, as time went on, the list of excuses went on, and no matter how healthy I was eating, my symptoms were getting worse.
Two weeks ago, I was sharing all the symptoms with my doctor again, and stressing the urgency of more tests. I was now the lowest weight I’ve been since high school. Every time old friends would see me, they would tell me I keep getting skinnier and skinnier. My doctor said it sounded a lot like celiac, but I was not convinced at all. I already HAD a celiac blood test 2 years ago and it came back negative. Well, apparently you can develop celiac at any age, and sure enough, my blood test for gluten sensitivity this time around was positive.
All the sudden the world made sense. Every time my tummy would hurt, I’d try bread or crackers to try and soothe the pain. I was having loose stools, so I was starting to avoid fruits and vegetables because I thought I was getting too much fibre. Pasta, breads, pastries and home made pizza are staples at meal times. It makes sense that my symptoms were getting worse, because I was essentially poisoning myself every time I was feeling bad, which exacerbated the problem. I started having symptoms of malabsorption which causes tiredness, brain fog and weight loss. Basically every time I’d eat gluten, my body would go into inflammation mode, and try to get rid of the gluten right away because my cells would register it as a threat to my body. Not only that, but if I were to continue to go undiagnosed and continue to eat gluten, celiac disease could lead to many other complications down the road, like more severe depression, infertility, cancer, all the terrible things.
THE GUT + BRAIN CONNECTION
As you can see, I have learned a LOT just in the last two weeks since diagnosis. I am convinced that my bout of anxiety and mental health issues from the winter are directly related to my new diagnosis. When I eat flour or wheat or gluten, I get inflammation in my body – mainly in my stomach, but also in other parts of my body. More and more research is showing that your brain can also have inflammation, which can cause mental health issues. The brain + gut connection is so clear to me now.
In a nutshell, that is a small part of my health journey over the last few years and I’m grateful to have found the root cause in its early stages. I still have so much to learn and a lot to take in as I start the path to feeling better. Every day I discover something else that I can’t eat, or I learn about foods with hidden gluten ingredients, and even hair / body products as well. Every day there’s something new I am researching to educate myself and be a proactive as I can.
LIVING WITH CELIAC
Being on tour is very difficult because I very often can’t cook for myself. I also really enjoy eating out at restaurants, but the more restaurants I am going to, the more it seems like the wait staff just aren’t educated enough on the severity of gluten intolerance. There is this gluten free fad circling at the moment, where people who aren’t gluten sensitive are still eating gluten free. This is causing the industry to not take gluten intolerance very seriously.
There’s this term that’s called “getting glutened” where you accidentally eat something that has hidden gluten in it or cross contaminated and often occurs at restaurants. The following days or weeks can have you feeling ill and depressed. When this happens, it really feels like I am taking one step forward and 5 steps back, which is super anxiety provoking. Living in fear with what I can and cannot eat is not fun! It’s a continuous vicious cycle that I am working daily to break, but it’s difficult when I tell someone I am gluten intolerant, and they fire back:
“Oh…. you’re one of those people.”
Yes actually, I AM one of those people and I would never have chosen this for myself! But it’s the cards that were dealt to me, and if you can’t handle my dietary issues, you can shove a gluten filled baguette up your bum while I run away from you!!
Annnnyway…I certainly have had many ups and downs on this rollercoaster as you can see. I hold some resentment towards my body sometimes, feeling like it is working against me rather than for me. But in the end, it’s all about learning and being kind to my body, and I am really looking forward to just feeling better again.
Thanks sooo much for reading and hanging out with me on the blog!
Your invested time and interest means a lot to me.
As a side note: I just edited together a brand new video, and it kind makes a whole lot of sense to put it in this post. It’s a cover song of Stevie Nicks’ “Landslide”… and at the moment, I’d say my personal health journey over the last few years has felt a whole lot like a giant landslide that’s trying to take me down. So please close your eyes, listen and take in the vibrations of the music to soothe your soul.
A great post – My guess is that there are many others out there struggling with the same or similar issues that are not diagnosed. I have similar symptoms but not all and I have never been tested. Wishing you lots of luck and the very best for your health and career. Loved the Landslide video – very good.
You will Conquer this step in your life, it will make you stronger & so many Fans will be able to relate to You. The Strengh you will receive from everyone, will keep you going. And the strengh You give to Others will magnify your Life. God be with you. Hon.
Thank you Sandee! Yes it’s one step at a time. I am already overwhelmed with the support from fans and feel so grateful with everybodys understanding.
I can appreciate your situation. A lot of people don’t understand it. I do have friends and relatives who have celiac and I know firsthand what they go through. Stay strong, you can manage through it!
Thank you Steve! Your words of wisdom are appreciated!
You are such a strong person. I admire you and your strength. Hang in there. You have a healing path to follow now…..good luck on your journey.
Thank you Tracy! I really appreciate your words of encouragement!
Just keep singing, my canary. This is your new reality, but it will get better. And I have a ton of new recipes to try ❤️????
little golden canary!