My Celiac Story.
Today I am sharing my personal story with Celiac Disease with you. It is Celiac Disease awareness month and I think it’s important to read all the different stories because it helps you to see that every story is different.
Why Share this?
Stories helps us connect, relate and inspire us to take action. My hope is that my story will motivate you to seek help in getting a diagnosis if you haven’t already and if you are already diagnosed but struggling, I hope that my story will help you to reach out for support. I also want to show from my story that every diagnosis is different and does not happen in the same way.
It’s also important to note too that diagnosis from country to country differ as well as from practitioner to practitioner. Each country has their own guidelines, but these are just guidelines and the practitioner still has the final word in most cases. But you have the right to always get a second or third opinion.
Perspective
Before I begin I want to say that this was not a daily struggle that consumed my life. It is hard to tell a story that portrays the right perspective. Besides the niggling symptoms from time to time, I just got on with life. If I highlight the parts where I struggled and string it all together, this is the part of my story that I am sharing.
Where it all began
It’s always hard to know where to begin a story, so I think I will start at the age I was when I had my first child in 2001. Things did not go according to plan and to make a long story short, I ended up with PND. It was around a year after I had my son that I noticed some odd things starting to happen to me. (interestingly a big life event such as pregnancy, giving birth, divorce, the death of a loved on has been shown to the stress trigger to activate Celiac Disease, along with the genetics and eating gluten)
The first symptoms
I started to struggle with random bloating, abdominal pain sometimes after eating, headaches, joint pain, I also experienced a lot of fatigue which I put down to being a new mom. I had anemia as well and the strangest was the reoccurring pins and needles in my hands and feet. I had some other random symptoms too that at the time didn’t seem like a big deal: moodiness, poor memory, feeling really low, confusion. My symptoms were not constant nor everyday but they happened often enough that I felt something wasn’t right.
In 2004, at the age of 24 , I had my second child, a planned C-section that went much better this time around. I spent the next 10 years being a busy mom raising my kids and pushed my symptoms mostly to the background.
One day, while on dial up internet (yes I am that old). I read something about wheat intolerance and It sounded like me. I thought that I should eat less bread and pasta but didn’t cut it out altogether. I remember eating rye bread thinking it was better because it was wheat free. I don’t remember specific dates at this stage, but somewhere along the line, the more I read, the more I got to see it was gluten and not specifically wheat and I thought I must have a gluten intolerance.
My symptoms got really bad from about the age of 30. I was in a bad way emotionally. I lost both my brothers in the space of 3 years. They were young and their deaths were tragic.
There is one memory that sticks out in for me. I was having breakfast with my husband and I ordered a croissant and he said to me “You shouldn’t, you know it’s going to be bad for you” and I said, “I don’t care, it’s worth it”. Well, I spent a week in bed after that croissant and after that I realized I couldn’t do it anymore. It really wasn’t worth it. The body pain, joint pain, headaches, stomach pain, depression and brain fog were not worth it.
By now I was 35 and at my worst. My Dad had just passed away a few months before and I was back in depression. I went to a medical practitioner. I had blood tests done (I never saw the results) but was told that I had intestinal permeability due to all my symptoms: hair loss, weight loss, hormone imbalance, anemia and had to go off gluten right away. I wasn’t told anything else. No other tests and no biopsy.
The symptoms that were the fist to go
Some of the symptoms went away within weeks of cutting out gluten : the tingling in my hands and feet went away and the headaches, the constipation started easing up (something I had since a child)and one of the biggest things was my seasonal hay fever that I had severely for years started to go away. The joint pain and the extreme fatigue started to lift and my brain felt clearer.
Not the happily ever after story…
Going off gluten was not the “And she lived happily ever after” picture though. I remember putting on a brave face to everyone around me and NEVER talking about it. I didn’t want to talk it because I didn’t understand what was going on and I already felt like a burden because suddenly I was having to say no to food, I had to bring my own food to social events and friends. And at first, some didn’t take me seriously, after all, I had lived for years just “having a little bit” of gluten and now I had a “gluten allergy”.
The damage gluten did
I had multiple food sensitivities, chronic 24/7 bloating, no self esteem, depression, exhaustion, hair loss and very bad dental damage that had lasted a decade.
I started doing proactive things
I did the FODMAP diet in a start to try regain my health and I really started digging deep into how I could get my health back. I cut out sugar and alcohol, I switched us all to natural products both for household and personal. I changed my diet, cooking food from scratch, organic only meat. Tried kefir, kombucha, bone broth. I also started learning how to bake gluten-free (from when I went gluten-free). I cut out the use of chemicals in our home. Switched to natural body products even hair dye. And I quit the gym after being a gym-oholic for more than 15 years. I began to exercise at home, and started hiking and walking every week. I started taking supplements. I stopped buying a lot of processed foods and became more mindful of what we ate. I started noticing things, how they were changing: my taste and smell became a lot more sensitive. I began to enjoy things I had never liked. Some things got worse. I became a lot more sensitive to chemicals: perfume, charcoal briquettes, paint fumes, skin products that had wheat in gave me a rash.
What Life after gluten looked like
Fast forward to 2018 and for the first time I felt good. I had more energy. My hair, skin and nails were finally growing and looking healthy. Mentally I felt better, my head felt clearer.
By 2019 I had no more food intolerances, my chronic daily bloat was gone, and the dental visits got less frequent after a decade of going for fillings and steel pins in my jaw.
In 2020 I began my gluten-free home bakery and started a website and social media and for the 1st time I said that I have Celiac disease. It was a long process to get there, to stop fighting it and to finally accept something I can never change. I had the symptoms, I had intestinal permeability and I have The Celiac genes.
My journey lead me to study to become a certified health coach and also a genetic practitioner because I really wanted to help others in a similar situation.
continue to PART TWO