My Celiac Story
Everyone’s celiac story is different. We all experience different things. We all had different triggers and we all work through it in our own ways.
I think it is important that we talk about our stories.
The more we share the more we empower others to advocate for their own health, to get answers, to fight through it, to speak up about their own stories.
Most importantly, by talking about our own stories we liberate others from feeling alone.
Our stories are all different but we can usually relate to pieces or feelings from each story we hear.
So, today, I am sharing my celiac story.
I am going to try and keep it short, concise and avoid the road of self-indulgence. I just want to paint a picture of what it was like from a physical and emotional standpoint from before I was diagnosed, to how it still affects me now every single day.
Here it goes.
I was in my first year of university studying at the University of Toronto. I was in a program that joined studies from UofT and Sheridan collage so that I would graduate with both a degree and a diploma after 4 years. This meant that I was squeezing 6 years of work into 4 years while also working as a personal trainer.
I was stressed, for sure, but most of my stress came from me. My grades needed to be perfect, but more importantly, so did my body.
I became obsessed with calorie counting, overtraining, avoiding fat and subbing sugar for splenda.
It started off innocent, but as I saw results I felt myself pushing the calorie count lower and lower to the point where I wasn’t happy unless I stayed below 800 calories a day… that’s less calories than a baby needs.
I never stopped eating entirely, but there was definitely some disordered eating. I insisted, however, that I was fine and that the weight loss was because of how hard I was working at the gym…. although it was happening really fast.
I loved the fast weight loss at first. I hit my goal weight (which was 110… much too low for my height anyways) and beyond that (down to 85lbs and 5”5’ when full blown celiac). Eventually, however, even I felt uncomfortable with how skinny I was. I felt bony and boyish. I lost my boobs, I had no hips… I was really just a rack of bones.
So, I tried to stop my disordered eating. I started eating bowls of pasta and lots of bread to try and gain weight.
This is where we get into the toilet talk.
As you can imagine, when I started incorporating copious amounts of grains and gluten to try and gain weight, my stomach didn’t like that.
I started to bloat… a lot.
All my bowel movements where just water & chewed up pieces of exactly what I had for breakfast.
I started to feel really shaky, irritable and weak.
Then, I lost my period. At first I thought I might be pregnant but when I did three pregnancy tests three months in a row and it still hadn’t come I knew something was terribly off.
I stayed quiet about it though. I mean, it’s kind of nice not having a period and I was still secretly sort of happy about how skinny I was.
Then my mood went off.
I worked at a bar between first and second year and I was the worst waitress of all time. If someone sent an order back, I cried. If someone hit on me (it was a pervvy bar), I snapped at them. I couldn’t fake it. I was just a big ol’ bag of emotions & frustration.
I remember the moment I realized I was out of control. I woke up that morning, the sun was shining, I was feeling great. I ate my favourite breakfast of greek yogurt, granola and berries. Then I broke down crying… for no apparent reason at all.
I remember saying to my mom “I should be happy, but I’m not and that makes me mad at myself and even more unhappy”
I’ve come to know this is a common feeling amongst those who are depressed because of hormonal or neurotransmitter imbalances.
You are not necessarily depressed because of circumstances or trauma, sometimes it truly is just physiological.
I was placed on anti-depressants pretty quickly.
Out of concern for my mental health, I quit my job at the bar and took the rest of the summer off.
I went up to my family cottage and brought my boyfriend with me (I promise this is about to become relevant).
See, up at my cottage we hang around my entire extended family of O’Kellys - obnoxious Irish beauties (I love them to death). When a boyfriend is brought up to the cottage for the first time they tend to get hazed.
One of the ways that my boyfriend got hazed at the time was by challenging him to go water tubing with my cousin Sean driving the boat. I knew Sean would drive like a maniac and try to flip my boyfriend out of the tube and potentially hurt him. So, I got him with him. Surely Sean wouldn’t try to kill ME!
As you may have predicted, Sean did not hold back and the both of us went flying out the back of the tube. On our way out, my boyfriend kicked me in the face with his size 12 foot and knocked me out.
My foot stayed in the tube and I was dragged unconscious across the water for a little while before Sean realized what had happened and stopped the boat.
I came to pretty quickly but my head was bleeding and my mouth felt swollen & painful. My boyfriend complained about his balls hurting and we all moved on without giving it a second thought.
I really thought I was fine.
The next week that same boyfriend broke up with me.
The week after that I had to have my two front teeth pulled because the accident had caused the root of my tooth to crack and had become infected. My body was unable to heal.
It took 4 surgeries before I was finally able to implant bone back into my gums that would actually take and grow. I was passed between several dental surgeons before we finally resorted to getting a special technology from the states that can be used in conjunction with bone implants to help stimulate bone growth.
How does all that relate to my celiac story? Well, I’m quite sure that the reason by bone cracked so easily and the first 3 surgeries did not result in bone growth is because of celiac disease.
Keep in mind I was still undiagnosed, but definitely in full swing disease mode.
In celiac disease, we experience a LOT of malabsorption. The first things we stop absorbing? Important minerals for bone health like calcium.
On top of that, there have been some studies showing that anti-gliadin antibodies may cross react with tooth enamel.
Furthermore, autoimmunity was in full swing and I was trying to introduce a foreign substance into my body and grow it. I imagine my immune system didn’t like that too much and tried everything it could to prevent that.
Anyways, the technology worked and I now have two fake teeth. They’re ok for now but the tooth next to them has always been lose and may eventually need to be replaced as well.
Like I said… every celiac story is different.
I was diagnosed at the end of that summer when my Mom finally insisted we see the doctor about my weight loss problem. She had seen all the pasta I had been consuming to try to gain weight but that I was still losing weight. She also snuck a peek at my stool when I was particularly disgusted and concerned one evening. She knew something wasn’t right, and so did I… I just didn’t want to deal with it.
I was actually very lucky that my doctor at the time even thought to test for celiac disease.
My antibody levels came back so high he was certain that it was celiac disease and that I didn’t have to do a biopsy to confirm.
“Just go gluten-free and you’ll be fine!”
Oh great…. what’s gluten?
I didn’t know and I didn’t really care. My Mom bought all the books and told me what I could and couldn’t eat. I obliged most of the time. I switched to gluten-free bread, didn’t eat pasta, etc, etc.
I did NOT think about cross-contamination. No one told me and even when I found out I didn’t want to be a bother at restaurants or make my family get all new appliances.
I did NOT care if something was made in a facility that also manufactures wheat or if a package said “may contain gluten”, as long as it wasn’t an actual ingredient, I ate it.
I had no idea about all the names for hidden gluten or the other ways I could be exposed like through envelops, lipstick, toothpaste, etc.
Also, I couldn’t resist raisin bran and naan bread every now and then. Yep, those were my cheats and I just went for it. Of course, I had no idea how detrimental just one cheat here and there could be.
Needless to say, I got glutened a lot and just proceeded to feel worse and worse until I finally started to take things seriously. It was affecting my energy and my school work and I could not handle the thought of my grades slipping so that was finally the motivation to fix this.
I went perfectly gluten free and gained some weight back, had a bit more energy, and came off my anti-depressants. Nice!… but not perfect… and in case you couldn’t sense it, I may be a bit of a perfectionist.
Why didn’t I have my period back yet?
Why was I still bloated all the time?
Why were my bowel movements still so gross?
I read and read and researched and researched to the point where I was reading and researching more about nutrition than about what I was actually supposed to be focusing on in school.
I ended up going back to school for nutrition when I finished at U of T and it wasn’t until then that I really found the answers I needed.
I used the autoimmune protocol (AIP) to really heal. Learn about more about AIP here.
The first time I did AIP, I was on the full elimination phase for 2 months and felt amazing! I got my period back, I got to an ideal weight, I had SO MUCH energy and, most importantly, my bowel movements were PERFECT!
Then I came off of it without doing proper reintroductions and everything went back to crap.
The reintroduction phase is the most important part of the autoimmune protocol. It’s where you figure out what your other triggers for inflammation and autoimmunity are. Without it, you just end up back at square one.
So, from square one, I did it again. For three months this time. I did proper reintroductions and found a few surprising and a few not-so-surprising triggers.
It seems to me I am one of the 20% of celiacs who do not heal by just going gluten-free because we cross-react to other foods. Read more about what those foods are and how that happens here.
I reacted to every single one of those foods.
I don’t feel great eating any grains or legumes really. Which leaves me effectively paleo.
The surprises were some of the mucilagenous foods, particularly chia and flaxseed. These seeds contain a particular kind of fibre that can feed bad bacteria, irritate the gut lining and disrupt digestion.
By the way, before I did AIP the second time I had been working at a juicery and eating chia pudding literally every day for breakfast. It just goes to show you that it is rarely obvious what’s causing the problem until you take it out and try to put it back in.
So, I had figured out how to keep myself healthy and I felt the best I had since I could even remember.
I started up my practice as a holistic nutritionist as soon as I got out of school and hit the ground running at two naturopathic clinics as well as on my own.
While building my own practice, I also took the AIP Certification Course so that I could become certified to help people through the very protocol that helped me so much.
I quickly became overworked.
I was working like crazy just to make ends meet financially.
I was mad at myself for not making enough right out the gate.
I wanted to immediately be helping the whole world and making enough money to live a happy life doing so.
I became incredibly stressed and burnt right out working into the wee hours finishing protocols and meal plans for my clients and never doing the same for myself.
Then, I got engaged. (This story takes place over several years by the way).
Now I had a wedding to plan as well. Obviously there is a lot of joy that comes along with that but on top of building a business & working at clinics, it was an added stress as well.
I started to think about what I was going to look like on my wedding day.
Old habits of caring more about what I look like and less about how I felt crept in.
I decided to try the Keto diet to lose some weight.
I was not overweight, but I’m supposed to be a stick in my wedding photos, right?
I had done my research on the keto diet, or so I thought. Some people raved about it for helping them gain control of their autoimmune disease even. But I didn’t look hard enough before diving into it.
I did it for two months leading up to my wedding. For some reason, because I was doing keto, everything else I knew about my health and my autoimmune sensitivities went out the window. I ate cheese because it was keto, I ate a bread made entirely out of flax seed daily…
but I lost 5lbs in the first week, then another 10 over the next 7 weeks.
I had so much energy at first but going into the second month I started to feel irritable, emotional, had no energy at all and obviously the weight loss had stalled a fair amount but I wasn’t willing to come off of keto because what if I blew up before the wedding as soon as I touched a carb?
A few weeks before the wedding, mid-keto, I went to my doctor. I had become concerned about some dyspareunia that had gotten out of hand recently. I was worried I might have endometriosis because that seems to have some autoimmune components, although I didn’t really have any of the other symptoms.
My doctor, being very open and progressive, gave me a full hormone panel and sent me for an ultrasound to see if anything was up. All came back clear EXCEPT… my TSH was “slightly” elevated, which meant it was at a 5.
Doctors reference ranges are way out of date by the way. Your TSH should be no higher than 2… and mine was 5!
Alarm bells went off because I know there is a correlation between celiac disease and Hashimoto’s and my mom had also recently been diagnosed so I out and out demanded a full thyroid panel.
Again, bless my doctor because I obliged without having to twist his arm.
And there it was. 1 week before my wedding, I was diagnosed with Hashimoto’s Thryoiditis.
Now, I don’t necessarily blame keto, although new research shows that it does severely deplete the gut microbiome in a way that may be detrimental to someone like me with digestive & autoimmune disorders. It is also highly implicated in the development of hypothyroidism. But again, I don’t think it was the only thing that did it.
In fact, I may have even had it as long as I’ve had celiac disease. Again, the two are so highly correlated, some have suggested that people with celiac or Hashimoto’s should immediately be screened for the other. I tend to agree.
However, I think the Hashimoto’s reared it’s ugly head at that time because I had slipped back into that mindset of self-criticism and self-hate. I had a lot of stress and I was not taking care of myself because I was too concerned with being perfect, making enough money, impressing people, appearing successful and being skinny enough…
So, I went back to AIP. I dialled in my nutrition. I worked with a naturopath to make sure the supplements I was using were right for me. I took time to relax. I stopped over training. I started doing yoga again. I worked on retraining my brain to be kind to myself and to love myself in every step of my life.
I am now in clinical remission from both of my autoimmune diseases but it is still work.
Every single day I have to ACTIVELY seek time for myself.
I have to GO OUT OF MY WAY to show myself love and to speak to myself kindly.
I have to PLAN AHEAD and PREPARE every single bite I am going to take.
I have to SAY NO to social gatherings that are going to increase my stress more than I’ll find joy in them.
I have to read EVERY ingredient list.
I have to POLITELY DECLINE the meal you’ve made me if it was made alongside something that will spark my disease.
I have diseases. It is still so weird to say. I am 27 years old and I have two diseases.
I feel so lucky that I know how to control these diseases and that, for the most part, I can.
Goodness knows I am by no means perfect at all of those things I’ve listed. In fact, I find the food stuff simply, compared to the self-love action. But I am grateful that there are things I can do to SEEM like a normal vibrant 27 year old.
I like to forget that I’m not, but I need others to remember that I’m not.
It is an invisible illness, so I get that it’s easy to forget, but for the times that I am not perfect, for the times I may flare up or get glutened, I need my friends and family to know and understand that I’m not just being dramatic or antisocial, because the thing that makes me even more sick is the idea that I’ve made someone else upset or unhappy… I’m still working on that too.
I am grateful to my autoimmune diseases for forcing me to really make an effort to love myself. Without them, I don’t know that I ever would have.
… OK! I think that’s it! We’re up to date!
Now I’ve found a good balance for myself. I still work too hard sometimes but I know I have to cut myself the slack otherwise I will flare, but I have figured it out enough to now be able to use my knowledge, my experience and my empathy to help others just like me to heal.
I guess that’s another thing I’m thankful to my diseases for. They gave me a fiery passion and purpose that I might not have found otherwise.
Thank you. Whoever is still reading, thank you.
I really appreciate the time you have taken to understand another story and another perspective.
What’s your story?
Please share in the comments.
Let’s keep the conversation going.
Let’s get through it together.
Kisses & Kombucha,
P.S. Please follow along on instagram @realistic.holistic to stay a part of the conversation every single day.
P.P.S. If you are newly diagnosed with celiac or need a little bit of extra help navigating the world of gluten-free, or even if you just want a few extra gluten-free recipes, click here to download your Quickstart Guide to Going Gluten-Free + 21 Gluten-Free Gut-Healing Recipes!