MY GLUTEN FREE STORY

People often ask me… how did you know you were gluten free? What happens if you eat gluten? What is Coeliac Disease? What can you eat? What can’t you eat? How long have you been like this? And the list goes on!

I thought to honour Coeliac Awareness Week and answer a few of these questions, I would write a post on my gluten free story. I want to stress that I am not speaking on behalf of everyone who has Coeliac Disease. I found it affects each individual differently – my sister for example has the same condition but we have different symptoms.

So firstly, what is Coeliac (Celiac in the US) Disease? It is an autoimmune condition where the small intestine HATES (like really hates) gluten. It has a hypersensitivity to the protein which leads to difficulty in digesting food and can cause adverse reactions / symptoms which can make you feel very poorly. The body mistakenly attacks the healthy tissues and this makes it very difficult to get the nutrients you need.

To answer the question ‘have you had it all your lives?’… the answer is no. See picture above enjoying gluten filled doughnuts.

My older sister, Jen, was diagnosed first. She lost a lot of weight, and no matter how much she was eating she struggled to put it back on. At that point we didn’t even know what gluten was, we had never heard of it before. To get an official diagnosis, she would need an biopsy to test part of the intestine. She had the procedure and was officially diagnosed. This was in 2008.

It turned out I would need to be tested out of routine. But then it all started to add up. I had been ill for quite some time and had gone back and forth to the doctor with stomach problems and pains, my nails and hair were very brittle and I felt very weak and tired majority of the time – and I too really struggled to put on weight. So I was not that surprised when my blood tests came back with the exact same results. We figured, well our parents must have it? Lucky them, no they didn’t. The doctors told us it may have skipped a generation or their genes combined will have created it. We still don’t know which. Either way, I had the same biopsy procedure and was officially diagnosed in December 2009.

The only treatment is to eat a completely gluten-free diet. Which is of course, what we both did from that point on. I have been a Coeliac for over 7 years now and it was very frustrating at first. I think frustrating is a good way to describe it, because ultimately there is nothing you can do about it so there is no point moaning or feeling sorry for yourself because it’s not going to change anything and lets face it, out of all the conditions out there, I count myself very lucky to have only this *touch wood*! Really, in the grand scheme of things, it’s not that bad.

Not eating gluten made me feel better so there wasn’t much more to it. However, when I first went gluten free the awareness was nowhere near what it is now, the options were limited and it was pretty annoying to find the alternatives on the shelves tasted like cardboard… oh and they cost at least three times the price.

When you can’t eat gluten you can’t eat wheat, barley and rye, or any foods made with these grains. Some obvious examples being, bread, pasta, pizza, cereals, cakes, biscuits, beer, pastry, crackers, anything battered and random things like soy sauce and stock cubes you have to watch out for too. Oh and anything that has touched these foods. If you have a crumb, it can trigger your symptoms (well it does for me) so I have to have my own butter, use toaster bags for gluten free bread, use separate cooking oils / fryers and make sure surfaces are cleaned to avoid cross contamination. I still occasionally find a label on a jar saying ‘sorry been glutened, do not eat.‘ Ha.

The cross contamination issue is still the same, we do have to be very careful. But the awareness is so much more advanced now and the options are far greater, there are some fantastic gluten free brands that I love, such as Genius, Doves Farm, Udis, Schar and a lot of supermarket own brands are great (Tesco, Sainsburys, Waitrose, Morrisons etc) and they are constantly evolving. It is also now much easier to eat out than it was 7 years ago, increased numbers of restaurants have dedicated gluten free options and menus, or they at least know what you are talking about so can provide some tasty alternatives. There are still some exceptions to that of course, but overall I find the whole lifestyle a lot easier than it used to be.

If I do accidentally eat gluten it will make me ill, stomach problems and extreme cramps, run down and generally poorly (this is just how I react, everyone is different) – but the symptoms usually pass in a couple of days. This is not as bad as the potential long term effects – which include osteoporosis and a much higher risk of certain cancers, just to name a couple. It can also cause Vitamin D deficiency, which it turned out I had, so I have to continue taking regular medication to keep my levels up.

There is a difference between being Coeliac and wheat intolerant, some people do not have Coeliac disease but choose not to eat gluten as their body generally doesn’t agree with it, it might make them bloated or trigger IBS like symptoms. Which is why it has been a trending ‘fad’ in recent times, but for people like me, eating this way is not a choice! Don’t get me started on ignorant people who roll their eyes whenever they hear the words gluten free… this is real and is a necessity for many people wanting to live a healthy and happy life!

As time goes on I am finding it far less stressful and I am glad it makes me think about what I am putting into my body, something really everyone should be doing anyway! I love to bake and cook so have been enjoying the challenge and am constantly developing new recipes… and now through my blog I can share these with you and hopefully help / advise others in a similar situation. I have a tonne of gluten free recipes already HERE.

If you are gluten free by choice or a Coeliac too, let me know! What’s your story?

K

X

Interesting fact: Coeliac Disease affects 1 in 100 people in the UK and in Europe. It’s more common than you think, so stay aware!

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7 Comments

  1. MARCO
    14th May 2017 / 5:55 pm

    WOOOOOOOOOOOW…YOUR POST IS SO ACCURATE AND WELL-WRITTEN I LIKE IT ❤️…MY NAME IS MARCO AND I AM ITALIAN …LIVING IN A SMALL TOWN 50 KM FAR FROM VENICE … MY STORY IS NOT SO FAR AS YOURS …I WAS DIAGNOSED IN 2008… IT ALL CAME OUT WITH SKIN ITCHING AND SCRATCHING AT HOME AFTERWORK …I AM AN ELECTRICIAN AND THAT TIME I USED TO DO IMPLANTS IN A MILL FACTORY …I HAVE BEEN WORKING THERE SO MANY TIMES BUT IT ALL HAPPENED JUST THAT DAY… MY FEMALE DOCTOR MADE ME DO THE BLOOD EXAMS AND THE RESULTS WAS FAR BEYOND THE NORMAL …SO I WENT TO DO A VISIT TO A GASTROENTEROLOGIST AND THEN( AS YOU AND YOUR SISTER DID) I HAD THE SAME EXAM WITH BIOPSY WHICH CONFIRMED THE DIAGNOSIS… I ALSO HAVE A COUPLE OF COLONOSCOPIES FOR ASSESSMENTS …AFTERALL OF THAT I BEGUN THE DIET EVEN THOUGH AS YOU TOLD AT THOSE TIMES THERE WEREN’T SO MUCH CHOICES ABOUT BRANDS AND KIND OF FOOD… NOW THERE IS MUCH MORE CHOICE…THE BRAND I PREFEIR IS SCHÄR… VERY GOOD …EXPECIALLY FROZEN PIZZA AND OTHERS…IN ITALY THERE IS ALSO “GALBUSERA” …WHICH HAS THE NORMAL BRAND BUT ALSO INTEGRAL AND GLUTEN-FREE LINE …
    I AM SINCERE KATIE …AT FIRST I FEEL VERY UPSET AND UNLUCKY AND DEPRESSED( I COULDN’T EAT ALL THE BEST THINGS ANYMORE)…AND I FELT VERY LIKE AN OUTSIDER IN THE BAD MEANING…’CAUSE ALL MY FRIEND WERE NORMAL AND AT A BAR I CANNOT EATEN ANYTHING ANYMORE… EVEN NOW SOMETIMES IT HAPPENS TO FEEL “SFIGATO” ( ITALIAN WORD WHICH MEANS “SOME KIND OF LOSER”) … BUT I KEEP IT UP WELL KNOWING THERE ARE SUCH MORE REALLY BAD BAD DISEASES ABOUT FOOD DISORDERS AND BY FAR I AM LUCKY NOT TO HAVE ONE OF THEM SUCH AS THE CHRON’S DISEASE … I AM NOT A COOK BUT I WILL READ YOUR RECIPES …ONEDAY MAYBE I WILL BE ABLE TO REPLY ONE… MY SYMPTOMS IF I ACCIDENTALLY FAIL ?! CRAMPS…METEORISM AND THEN DIARREA ( OMG HOW I HATE RUN DOWN TO THE BATHROOM MORE THAN ONCE…EXPECIALLY WHEN I AM OUT WITH FRIENDS☹️)…I WISH THERE COULD BE A REMEDY ( I LISTENED OF A PILL TESTED IN USA)… BUT I ACT A FOOL… ‘CAUSE I AM WHAT I AM AND I HAVE TO REACT STRESSLESS ABOUT THAT…THERE ARE MUCH MORE PROBLEMS IN LIFE LIKE JOB AND FIND THE RIGHT ONE TO LOVE …DO A FAMILY AND MAKE CHILDREN…SORRY FOR THE LONG MESSAGE AND FOR MY ENGLISH…LAST SUMMER I WENT TO LONDON BY VACATION …NOW I KNOW THERE IS ALSO BEAUTIFUL THINGS TO WATCH IN MANCHESTER LIKE YOU ☺️… THANX FOR THE PATIENCE AND FOR READING ME ( IF YOU DO LAST UNTILL THE END WITHOUT FALL ASLEEP )…I FOLLOW YOU ON INSTAGRAM ( MY PROFILE NAME IS MYFUTURE80)…I WISH YOU …YOUR SISTER AND FAMILY THE BEST ✨…HOPING ONE DAY TO HAVE AN EXCHANGE OF OPINIONS WITH YOU … ANYWAY THANX …HUG AND KISSES FROM ITALY … THUMB UP FOR GLUTEN-FREE PRIDE ☺️…WE ARE HUMANS NOT X-MEN ☺️…BYE…MARCO

    • 15th May 2017 / 2:30 pm

      Hi Marco,

      Thanks for your comments and sharing your story! I also love Schar, they do great options for us here in the UK too. I have also noticed on my trips to Italy that they have some fantastic gluten free pizza!! I wish you all the best and do let me know if you ever get around to testing out any of my recipes 🙂 Katie

      • MARCO
        19th May 2017 / 1:32 pm

        Dear Katie… thanx for the answer… hope you and your sister feel great … family too ☺️

  2. 15th May 2017 / 9:15 am

    I just spent most of my time nodding and agreeing with all of this haha! It is crazy how much it has developed, I was diagnosed in 2008 and when I went to Asda and saw the selection of food (probably about 2 shelves) I had a mini breakdown in the aisle thinking I was never going to eat again haha!

    My granddad even bought me a bread maker because the bread at the time was so awful, it just didn’t have any consistency to it so it was SO hard to make a sandwich.

    Luckily, my triggers aren’t so severe. I’ve found it’s only ever pasta and noodles that set me off thank god.

    Are you going to the Gluten Free food festival in Salford in a couple of months? 🙂 xo

    • 15th May 2017 / 4:09 pm

      Hey lovely! Thanks for the message – great to find other people who can relate! I remember really struggling to make a sandwich too, or just a piece of toast. Thank goodness things are now on the up, and it can only get better 😀 Unfortunately I am away on my travels when the food festival is on so wont be able to make that one – gutted as it would have been fun & would get to meet a few of my fellow coeliacs!! Should be attending the allergy & free from show in London in July though! 🙂 x

  3. 15th May 2017 / 5:19 pm

    Hi Katie,

    Thanks for sharing your story! I have coeliac too, but it couldn’t be diagnosed by biopsy – I think now, looking back, it’s because I’d started to cut out gluten almost by accident before the exam (which is something you’re told not to do now). But I’ve been gluten free for 3 years now and it was the best thing I could ever have done. I was so sick before this – constantly nauseous and feeling like I was going to violently throw up, stomach aches, deathly tired, always pale, and when I thought about it I’d been the same weight (whatever I ate) since the age of about 15. Oh…and the mouth ulcers! All. The. Time. Now if I eat gluten the nausea and gripping stomach ache comes back within the hour, I develop mouth ulcers quite quickly, and depending on how much I’ve eaten I may be reaching for an immodium or five… unpleasant! Even without an official diagnosis, I’ll never go back to eating gluten at all! My experience even led me to create a food diary for coeliacs and people with gut issues, because I needed one when healing and couldn’t find one anywhere!

    • 18th May 2017 / 6:58 pm

      Hi Laura, Thanks for reading and sharing your story too! I totally know what you mean – I too really struggled with the symptoms from when I was young, I just never knew what was causing it! Ahh interesting I will have to check your food diary out too 😀 x

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