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My Coeliac Diagnosis Story




Me and food have never really got on!! I have always been labelled an incredibly fussy eater. I was also an incredibly washed out and pale child, very snotty, bruised easily and complained of stomach pains. Since I was very little eating has resulted in severe pain, multiple hospital stays, scans, procedures and operations. My symptoms of coeliac were initially quite non-specific. Looking back now in hind sight a lot of symptoms I had growing up almost certainly link back to my coeliacs.

 

The first being the incredibly large amount of mucus I produced!! Gross, I know, but now having been following a gluten free diet for 7 years I am much less so. I always had a permanently blocked nose, I had no sense of smell and was always congested. I became addicted to nasal sprays as they were the only relief I could get. I ended up having an operation at 14 to remove my adenoids and cauterise/widen my passages (that was a whole story in its self!!) but nothing ever seemed to work. Before this however at 11 I had to have an MRI scan as I was experiencing such severe headaches and numbness in my legs. My scan luckily came back clear however the reason for these symptoms was still unknown. As I went into my teenage years my gastro systems got worse. I was having constant severe stomach pain, my bowels were a mess, I suffered with nausea and sickness. I was exhausted all the time, bruised easily, I also had severe bone pain and joint pain. I fell on my duke of Edinburgh and ended up on crutches for a while as I had chondromalacia patella. My joints were always very painful and sore. I ached from head to toe and was quite frankly very miserable. The mental symptoms included brain fog, low mood, anxiety, irritability and lack of concentration to name a few. I also struggled with eating disorders so it was tricky to know exactly what caused what but gluten definitely was not my friend!!

 

I ended up in hospital for a week with suspected appendicitis and was in agony- they did an operation but the results were inconclusive. I did however have a blood test which showed I had inflammation in my bowel. I was scheduled in for an endoscopy and that was when it was officially diagnosed. I had coeliacs disease.

 

It was a classic NHS performance as when I came around (I had it done at the children’s hospital so had it under anaesthetic) I was given a bowl of rice crispies. The nurses hadn’t been told why I was there so they were gluten rice crispies. The doctor came round, gave me a minion well done certificate and a red folder containing some information on a gluten free diet and that was it. Off I went, into the unknown- the world of gluten free and what a world it is!!

 

Firstly, can we just say the folder did leave something to be desired, it had a coeliac UK card in it (but the membership costs so only good if you can afford it), some information about coeliacs, lists of things you can and can’t eat, a schar voucher and a recipe to make gluten free playdough. Hopefully the folder may have improved! While my diagnosis in some ways was a relief- the constant gaslighting by medical professionals had already taken its toll mentally. I was so used to being not believed, viewed as crazy and it was all in my head. Coeliacs explained a number of my physical symptoms however this again meant my diet was further restricted and food was even more a central part of my life. My diet was further restricted and eating the ‘wrong’ thing led to significant pain and long-term health consequences. It means that food became a further obsession. Having to check packets, researching menus and a further fear of eating in public. For a long time, I never ate out with family and friends, I have spent more hours than I care to count sitting watching others eat at cafés or restaurants. Though that actually doesn’t bother me, it does others and it often is hard to explain why I can’t join in. Also being someone who has to really want to eat a specific thing to be able to eat, being gluten free and vegetarian means I often can’t find what I am looking for. The constant package searching means I have numbers and amounts swirling around my head- food can never just be something I don’t have to actively think about making my ARFID remain firmly implanted within me. Alongside ARFID being so misunderstood so is coeliacs, meaning my food choices or lack of are constantly being judged and under scrutiny which further adds to the fear. My mum has forever been told to leave it she’ll eat when she’s hungry, tell she can’t have desert, make her sit there until she eats it (being ARFID, PDA, autistic and also having struggled with anorexia I think we all know how that would have ended!!). Luckily my mum understands me and is really supportive but the constant judgement from others has had an impact on both of us.

 

It became so apparent the joke having to be ‘gluten free’ really is. So many people thinking it’s a fad or a trend, not realising for coeliacs it is actually not only essential but a matter of life and death. Coeliacs isn’t a terminal illness and if you follow a strict gluten free diet you can live a long, happy and healthy life however not doing so can lead to a number of debilitating symptoms, irreparable damage and ultimately cancer among other things. I remember watching videos on social media of people taking the mick out of people asking for the gluten free menu, the memes which swirled the internet and the damaging messages given out on national TV. Coeliac disease is not a choice and the consequences of even a crumb of gluten are debilitating and potentially significant. I have often had to sit at the table and not eat anything due to nothing on the menu being able to cater for my dietary needs or spent an evening rolling in pain by the toilet after going out and eating something from a ‘gluten free’ menu that clearly hasn’t been prepared in a safe place. It’s frustrating when you really fancy something (aka naan bread) and it’s just not the same or you go out and see a beautiful glutenny snack and all you can have is a prepacked millionaire shortbread or brownie!! However, with all this being said for me being gluten free doesn’t actually affect my life that much. I probably am an anomaly, having ARFID is so much more restrictive and debilitating than having to be gluten free. These days there are so many amazing gluten free cafes, restaurants and options. Some of my favourite chain restaurants are Pizza Express and Honest Burger. Gluten free pizza express dough balls cannot be rivalled!! I also have been to a number of cute independent cafes which offer such an array of choices which is always such a pleasant surprise. Most recently I went to Nibble in Manchester their gluten free brownie was quite literally to die for!!

 

It takes searching, trial and error and more effort but you can still enjoy pretty much all the food you want, just might have to get to it in a different way. My favourite cake has always been Malteser tiffin and I hadn’t had it since I was diagnosed until about a month ago when I realised, I actually could just make it gluten free- it seems obvious but the whole Malteser bit threw me!! It is amazing and just as good as I remember it. I have found on the whole if you make the food yourself it tastes just as good as gluten food! Some of the shop bought stuff can vary however there are so many options now you just have to search. The biggest barrier is the financial aspect which is tough for everyone at the moment, but there are ways to reduce the price of your food shop- e.g. rice is usually natural gluten free (but of course always check the packets!!).

 

I would say I have to be more organised in a way being coeliac, for example now I am on the train to stay with a friend and I have my handy little lunch box packed with snacks next to me, however I am not sure whether it’s being gluten free or the fact I have ARFID. If you haven’t heard of ARFID, it’s Avoidant, Restrictive, Food Intake Disorder, it’s a type of eating disorder which is quite prevalent in the neurodivergent community however not exclusive. It’s characterised by a very restricted diet due to avoidance of certain foods be that due to sensory, trauma, pain, anxiety- to name just a few. I now know I have had ARFID for pretty much my whole life and I do wonder whether my undiagnosed coeilacs disease contributed to this. The link between pain, discomfort and nausea with eating may well have added another element to my fear of food.  For this reason I feel I am not the best person to give advice on leading a healthy coeliac diet!! I do have to rely on nutritional supplement drinks (when I actually can take them- we have PDA to thank for that!!) but I do have some staple favourites I’ll share with you. Being ARFID I usually only have about 5 safe foods at a time and I eat them for a month or so and then can’t stomach them anymore and change. But overall I have a group of foods that go around in this cycle so in case you are super stuck on ideas here we go!!

 

Nairns gluten free mini cheese bakes are current must have alongside a long term favourite Schar Melto (gluten free bueno- actually life changing). Fries to go and Reeses cups are another two safe foods that are in the cycle. White Rabbit gnocci is currently my fave and I also love the White Rabbit spaghetti bolognaise (it’s also vegetarian) when I have a spare £5 to spend. Baking bread (in a bread maker) is lush and the M&S chocolate muffins are amazing. For blueberry muffins, I would say ASDA and then Tesco did an amazing salted caramel muffin. M&S do spring rolls and samosas which is a nice addition. I also had an amazing gluten free margarita from ASDA. As you can see it’s a complicated shop- a weekly shop involves a multitude of different establishments but when you know what you want/like it does speed up!! Corn flour is a gamechanger- pancakes and Yorkshire puddings, substitute flour for corn flour and bammmmm. In fact my non-gluten free family and friends who have eaten the cornflour pancakes/Yorkshires are converted- so much better!!

 

It's definitely a scary and daunting journey when you start but I have to admit 7 years I don’t really even think about it. It’s like autopilot- I check packets, ask for the GF menu and mainly I just know- every supermarket I go to off I trot to the free from section to see what delights they have on offer. I’m very open and honest and am lucky that no one close to me has ever had a problem with my dietary require (if I am honest though, being gluten free is the least weird thing about me- so I guess that helps!!). I am always flexible and truly am happy to just sit and have a drink and eat before/after when I have to. For me food is a chore and just something I need to live and whatever it is I eat needs to fuel me and allow me to do the things I want. Food can be such a big part of modern society and socialising which can make it difficult for those of us who have, for whatever reason, any kind of specific requirement. However, having arfid has allowed me to view food in a different way. If I want to meet up with friends who are going for a meal and there is nothing I can eat, I can still go- I am going to catch up with them and food just a side part. It can be hard to explain to others or to restaurant staff but ARFID awareness have a card which you can show which makes my life easier and on the whole avoids any awkward conversations. Luckily for coeliacs there are options in most places but I guess if you are a little trickier to cater for like me, maybe make your own card or we could suggest it to coeliac UK!! Sometimes showing something is easier than trying to explain. I hope this little blog has been useful and insightful and helped maybe anyone who is potentially embarrassed or struggling to come to terms with their diagnosis. There is nothing to be embarrassed about, and it says a lot more about others, than you if any one who judges you for a medical condition, you can’t help!! I have found following some gluten free accounts on my socials has helped me be more aware of new products or places to try which is always exciting. I really want to go to Italy now after seeing a lot of gluten free bloggers videos!!

 

If you are gluten free please share any exciting recipes or new food,

The coeliac community thrives on our shared knowledge of the best places/brand!!

 

Lots of Love

Hannah 😊

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