Coeliac Disease Post Diagnosis

Coeliac Disease Post Diagnosis

As you may have read in my previous post, I was diagnosed with Coeliac Disease two years ago. The fun doesn’t stop there. I have learnt a lot post diagnosis and it was where the real changes happened.

I didn’t know what being gluten free meant or even what it was. I was given A LOT of information from my consultant after diagnosis and I felt overwhelmed. I was going from eating gluten every day of my existence to cutting it out of my diet completely. I had a lot of questions.

What about pizza?

What about bread?

Importantly, what the hell am I going to eat after a night out?!

I panicked. I’ve always loved food and I can only resemble my relationship with food as a Romeo and Juliet love story, we come as a package.

The first thing I did was researched. I trawled through every single website and gluten free blog you can think of. I read about people’s experiences, recipes and food habits and spent so much time scrolling through instagram food pictures. It opened up a new world to me.

The first few months were difficult. Adjusting to different food textures and eating different foods was hard. It seems silly to look back on it now and how trivial it all seemed, I mean it’s just food right? At the start, I didn’t feel like I was eating food for pleasure, but just eating because I had to and that I had to eat something. I stuck to plain foods at the start, meats, veg, potatoes and rice. Not that I didn’t know what to eat but I think it was because I was scared to branch out and just went for safe options. I had a year of my life hating food and associating it with stomach cramps, tiredness and sickness that I found it hard to switch out of this mindset and to actually enjoy food.

For anyone who has been newly diagnosed, I really would recommend joining some Coeliac Disease Facebook Groups like this one. This really helped me at the beginning. Seeing people post recipes and things they’ve eaten for lunch really helped me to become more adventurous and experimental with my food choices. It opened my eyes and made me realise that I don’t need to eat plain food and that I can ‘feel normal.’ You also get to read other people’s journey’s, share tips and offer advice, it’s something that really inspired me along the way.

So are there any positives post diagnosis?

  • Exploring new foods. I have eaten foods that I never thought I would eat. Protein balls, lentils, chickpeas?! I’ve definitely been a lot more adventurous with food choices.

  • Cooking. Since my diagnosis two years ago I have found a new love for cooking. I say the term cooking lightly, but trying to come up with replacement ingredients and flavours makes cooking more exciting.

  • Baking. I miss sweet treats the most and much prefer making them myself. Check out my previous baking posts here.

  • I feel healthier. Three years ago I thought being tired and struggling to think straight was normal and happened to everyone, little did I know it was Coeliac Disease that played a big part in this.

  • I don’t feel like I’m going to shit myself or be sick after eating.

And the negatives?

  • Hospital appointments don’t stop after diagnosis. I had to see my consultant and nutritionist every few months for check ups and bloods tests.There were times when my Coeliac TTG levels had stayed the same and I got hung up on it and so did my consultant. I was doing everything right, but they weren’t improving. This also put the fear in me as they said I may have to have another Endoscopy, eeeek. Touch wood, I haven’t and I’ve now been officially discharged from my consultant.

  • Vitamin deficiencies. If you have Coeliac Disease it means you cannot absorb nutrients and believe me, don’t I know it. I have struggled with anemia, B12 deficiency, Vitamin D deficiency and folate deficiencies. This resulted in me having to have a DEXA scan which looks for osteoporosis, luckily I was okay. Since this, I’ve taken endless amounts of vitamins to get my levels up, but they haven’t reached normal for a long time. This is something I’m still working on and trying to figure out, but can get realy frustrating.

  • Getting over the awkwardness. Having food intolerances are a pain in the arse, especially when you’re surrounded by people you don’t know. I feel awkward and stupid asking for a gluten free option every time or saying that I can’t go into a certain restaurant because of it.

  • It’s bloody expensive. £2.50 for 12 slices of bread?! No thanks.

  • Finally, THE JUDGEMENTAL PEOPLE THAT SAY GLUTEN FREE IS A FAD DIET AND JUST WANT TO CRITICISE EVERYTHING! No, just no. I’m going to discuss this in greater detail in tomorrows post. My inner keyboard warrior is going to appear.

There is also the whole idea around convenience, eating out and supermarket choices. There is a lot to learn post diagnosis, figuring out which foods you like, which supermarkets are cost effective and which restuarants are ‘safe.’ I’ll discuss these issues later in the week.

The only cure is to follow a strict gluten free diet for life and yes, having that little crumb of gluten will do damage and will cause you to be in immense pain.

I’ve definitely learnt a lot on the way and it’s too much to write in a single blog post. If you have any questions, let me know.


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