My Journey and Story with Celiac Disease
Updated: Sep 12, 2021
This week I wanted to talk to you about my story and my journey with celiac disease. Basically cover off how things started for me, how I got my diagnosis and how I have progressed since I found out that I have celiac disease.
Below is the transcript taken from my Podcast, The Healthy Celiac Podcast.
If you would prefer to listen, you can do so here.
So let's just wind the clock all the way back to the very beginning.
It was actually the year that I had had my baby way back in 2007. With my first daughter, everything was fine. Everything was amazing. My health was probably the best it had ever been in the lead up to falling pregnant. And I had my baby girl and she was born healthy and all the rest of it and everything was great, perfect birth and everything.
And then when I stopped breastfeeding, everything changed. Up until that point, everything was wonderful. She was about seven and a half months when I stopped breastfeeding (not by choice, basically my milk dried up. So that's a whole other story) but yeah, so I stopped breastfeeding and very soon after that I returned to work in a role I had never done before. I tried to resign from my previous job as a flight attendant as I was on maternity leave and I tried to put my resignation in and they wouldn't accept it. They asked if I would come and do some admin work for them. So I did. And honestly, I didn't want to be there. I wanted to be home with my baby and I was very nervous and I was very anxious and I got diarrhea and I put it down to the fact that I was back at work and I didn't want to be there. I put it down to that, that this reaction was basically a result from stress. And I ignored it for quite some time and it got worse and worse. And I just thought it was just my mindset, just feeling terrible about leaving my baby.
As time went on, the symptoms got worse and worse, and I didn't even realize what was happening because I just got so unwell very, very quickly. So as the months rolled on, I lost a lot of weight. I went down 2 clothing sizes by the time my daughter was one. At her first birthday party there's a photo of me sitting with my daughter and you can see my ribs above my breasts. It's just, I've never been that skinny ever. And it wasn't from trying. It was just because my body wasn't absorbing any nutrients whatsoever. Everything was just going straight through me.
It was a struggle to get out of bed in the mornings. I just don't recall much of that time. I don't have many memories of what I did with my baby. And what happened during those times. You know, things we did or places we went, I don't really remember much of it.
My brain fog was atrocious. I remember being at my desk in my office job, and I'm putting my head down for a few moments and actually falling asleep. I was so tired all the time. I was just so exhausted.
I was in agony with pain in my belly. There were just so many things that just happened and I don't know how it took me so long to sort of see what was going on. And it wasn't until a few people such as my friends and family asked me if I was okay and said, you know, you've lost a lot of weight, are you okay? Are you looking after yourself? And you know, when I explained what was going on to a few people suggested that maybe I should look into things and check myself out. So I went along to a doctor and the first doctor told me that I had postnatal depression and I should get out of bed in the morning and go and exercise. And all my problems would be solved. And knowing now what I know about postnatal depression, that's actually not the answer at all.
But it wasn't that it was just that I had no energy and I didn't want to get out of bed. I just wanted to sleep because I felt so terrible. So I just brushed her off and thought this woman just has no idea what she's talking about, because I know I don't have postnatal depression. I didn't feel depressed. I just felt unwell and had lost a lot of weight and didn't want to get out of bed. I didn't feel like I was sad or feeling depressed at all. So I, I didn't believe what she was telling me.
I went to a number of other doctors and they couldn't tell me what was wrong with me. They just told me, you know, you're a new Mum. You're not getting much sleep and it'll get better and things will improve. And you probably need to eat more calories and all these types of things.
And then I was at work one day and I was buckled over in pain. And I remember someone from work said I should go home and I thought, yeah, you know your right. So I went to leave to go home and I thought, no , I'm going to go to the hospital. I'm going to emergency. I need someone to see me, while I'm in this much pain. They need to see me and fix me and tell me what's going on because this is not right. And I waited at the emergency room at the hospital and I got seen by a doctor and I told him all my symptoms and everything that had been going on. And he poked around at my belly and he said, you've just pulled a muscle. You'll be fine. You just need to rest. Oh, I was so angry because I hadn't pulled a muscle because it didn't feel like that at all. Not to mention I'd been sitting at a frigging desk. There is no way I could have pulled a muscle.
So I left the hospital feeling annoyed, angry, and just frustrated so good old Dr. Google, I got on the internet, you know, and apparently I had cancer and all these other issues.
And I remember sitting down with my dad one night because he was actually worried I was drinking too much water. And that was the thing, I just could never quench my thirst. I did drink a lot of water and he was worried that I was flushing all the goodness out of my system. So that was something we researched as well. And I didn't really think it was that because I didn't drink excessive amounts of water. I thought I drank a reasonable amount.
In the end, it was about the fifth doctor that I went along to who diagnosed me with celiac disease. And it was actually my family doctor from when I was a little kid. I thought, yep , I'm going to go see him. I trust him. He's known me for a very long time. And I'm just going to book an appointment with him and go and see him. And I had to wait quite a while to get in with him. When I went to my appointment, I told him my symptoms. I told him everything that had been happening and he turned around and he said, "Belinda, I think you've either got Crohn's disease or you've got celiac disease". And I didn't really know much about either of them, but he said, "let's hope it's celiac disease because that's the better one of the two, but I'm going to do the test for you. And I'm not going to give you the results until after Christmas and new year's because I don't want you to have to make all these changes until after then", and I still didn't even know what he was talking about, 'all these changes', but he sent me on my way.
I had some tests done and then it was in the early new year and he phoned me and it was 2009 and I had to go in for my appointment and he said, "Well, I've got good news and I've got bad news. And basically the good news is you don't have Crohn's disease, but the bad news is you've got celiac disease". And I said, well, what does that mean? And he said, "You just need to eat gluten free for the rest of your life". Oh, okay. So he said, "I think you need to go see a dietitian and just get some help" and he sent me on my way with a referral to a dietitian .
So I went home, I did some research and thought, yep , this is fine. I can do this. This is not a problem at all. Went along to the dietitian . And I had two appointments booked in with this dietitian . And I wouldn't knock all dietitians because I know there's amazing dietitians there, but I unfortunately was sent to the wrong one. He had no idea what a celiac needs. He had no idea about much at all. When I know there's dietitians out there, that sspecialize in gluten free and celiac disease, this guy, he was not that specialist. And he basically gave me a booklet with some info in it about what to eat instead of, you know, what I had been eating, but it was pretty bad. It was just packaged foods. It was, you know, have this instead of that. And it wasn't very helpful. And yeah, I kind of walked away thinking, Oh my God, I've just wasted my money. And the crappy thing was I had to go back to him as a followup appointment just to let him know how I was going with everything. And it was just a waste of time. It was just a waste of money. And again, I just felt let down, I felt unsupported. I never learned anything about cross-contamination. I never learned anything about how unsafe it is to eat out in restaurants and cafes. I just got told that it was as simple as swapping over to gluten-free food. And as you probably know, or hope, you know, it's much harder than that. There's much more to it than that. So I spent a number of years working out what makes me feel good and what doesn't make me feel good. And I healed my body. And when I say healed, I'm pretty sure I've mentioned this in a previous episode, I didn't heal myself from celiac disease because that is impossible. Once you're diagnosed with celiac disease, you have it for life, unless they come up with a cure, but you can heal your Villi , which means you will be healthier. And you will absorb the nutrients from your food when you eat well.
Anyway, as the years went on, I became inspired to become a health coach. And I studied over a hundred dietary theories to become a health coach. I'm a certified health coach. And I learnt through that program that I took that there's much more to life than just eating gluten free . There's much more to how we feel and how we look after our bodies. And that was the best decision that I could have done for my own health. But when I first decided to become a health coach, I did it because I wanted to help other women. And I wanted to help other people not be in that same position that I was in when I was diagnosed and really not get the support that I needed. So I decided that I was going to make it my mission to help more people and support them so that they knew what they needed to do when they got diagnosed with celiac disease.
When I first started my coaching practice, I was working with clients and I was working with basically anyone that wanted to work with me. And I was booked out constantly. I had lots of people that came to me that were either already diagnosed with celiac disease or were having lots of gut issues, whether they'd been diagnosed with IBS , or a number of other issues. And it was interesting because I did help people discover that they had either had a gluten intolerance or they actually had celiac disease. So they were drawn to me, which was pretty, pretty cool.
As the years have gone on, I've also recently found out that I've got lactose intolerance. So that's been another journey as well, discovering what I need to do to eat not only gluten free now, but also without the lactose. So yeah, that's been, if I can be brutally honest, I think that's been harder than the actual gluten free side of things. It's kind of like the dairy is in everything you find. Milk is in so many gluten free foods, but anyway , and then last year I was convinced that my son had celiac disease and we spent , I'm going to say about a year getting him diagnosed. And we ended up getting him diagnosed with non-celiac gluten sensitivity. So I feel like I'm the best mum for him. You know, I'm the best support for him because I've already been living this journey for over a decade. And now I get to help him live with his issues and help him, you know, eat well and look after his body. And at the moment he's only four and he already knows what makes him feel yucky and what doesn't. When he's told that he can't eat things, he's very accepting and he understands. It's good that, you know, we get to help him with that. And that's another journey and learning the differences between non-celiac gluten sensitivity and gluten intolerance .
Now what I do is I don't do one-on-one coaching at the moment, mostly because of the COVID situation. But because I do more of my coaching in an online space. You may have heard me talk about Ultimate Celiac System which is my main area that I can support more people and do it on a larger scale. Click here to learn more. This way I can help more people throughout the world, rather than just, you know, the people that live within my area that want to drive to me and work with me one-on-one.
I just really wanted to share just a little bit more about my journey and, and just let you know, you're not alone. You know, these things take time as far as healing and feeling better and, you know, there's support out there and staying in contact with people like myself and other people within the community that are here to support you and guide you and teach you more than you possibly know right now.
Thanks so much for reading about my story and feel free to DM me on Instagram. If you've got any questions or you just wanted to let me know a little bit about your story, I'd love to hear from you here.