My Coeliac story

my coeliac disease story

OK so my Coeliac disease story started way back when I was age 19 (i’m 38 now), I was 9 ½ stone and a size 10, I found out I was pregnant with my eldest daughter (whose almost 19) with morning sickness, cravings and giving up smoking I piled on 8 1/2 stone in just 5 months and carried on gaining even more weight. I started eating all the things I never really ate before, crisps, cakes, chocolate, and I ballooned to a massive 24 stone and a size 32-34. I struggled with my weight from then on, with constant trips to the doctor for various ailments not one doctor suggested gluten could be the cause.

For the best part of 19 years I felt like I was just deteriorating, little by little my body was breaking down. My sleep became non-existent, I was angry all the time, snappy, agitated, riddled with mouth ulcers, forgetful and had every other symptom associated with Coeliac disease, I felt like my body was falling apart.

About 5 years ago my relationship of 15 years had come to an end and my world fell apart. I battled depression and after yet another trip to the doc was offered anti-depressants. I flat out refused to be reliant on that crap and started going to the gym instead, I started healthy eating and banned junk food from the house. I managed to lose weight following slimming world but the high fruit content just made my mouth ulcers worse, cereal and toast would kick off my food cravings, and I would struggle to stay on track. At that point I was still eating gluten as I was unaware of the Coeliac disease and ended up putting some of the weight back on, the constant food cravings made me binge on junk food all the time.

A new diet came out that was high protein, I had nothing to lose but weight lol, so I ordered the book. I did really well on it, in fact all my symptoms disappeared. I lost a lot of weight and got down to around 14 1/2 stone. But I started to feel run down and felt like the diet was making me ill, so relaxed a bit introducing other food back in. in 2015 I met my partner, we started eating out, or phoning a take away and my old eating habits started creeping back in and I started gaining weight back, my symptoms came back and I was constantly bloated, still at that point I didn’t know about Coeliac disease, I hadn’t even heard about it.

I went to the doctors with an a4 sheet of paper of everything wrong with me and left feeling like it was all in my head. When I got home I googled a list of my symptoms and the result of my search screamed Coeliac disease. I went back to the doctor (after going gluten free) and suggested Coeliac disease and asked for a blood test. I was mis-informed about testing by 2 different doctors and had 2 blood tests that were negative for Coeliac disease. I wasn’t told that I had to be eating gluten for a minimum of six weeks for the test to be positive infact I even told the doctor that it was recommended to have gluten in your system for 6 weeks but he said no its fine you don’t need to.

I had noticed my middle daughter had all the same symptoms as me so I convinced her to get tested, her blood test came back positive and yet she wasn’t referred for the biopsy, I had to request it. I have given up trying to get a diagnosis for myself and at this point I feel my health is far more important than having the diagnosis, I feel like my mental health suffers terribly when I eat gluten and apart from having the label of a Coeliac, I just don’t see the point in putting myself through poisoning my body for them to tell me what I already know.

I believe my mum was an undiagnosed coeliac, she had multiple sclerosis and I’ve read online about studies carried out that link Coeliac disease to nerve damage, M.S also affects the nerves. The immune system attacks the myelin sheath surrounding the nerves, leading to inflammation and long term damage. Once the nerve covering is damaged, your nerve impulses slow down or stop. M.S patients who were put on a gluten free diet were seen to have huge improvements with their symptoms. Coeliac disease is hereditary and if your mother, father, brother or sister has it you have a one in 10 chance of developing it.

I have been gluten free for around a year now but have still been struggling to lose the weight, I read online a few weeks ago about coffee and chocolate having gluten in it, so I gave up coffee and chocolate and started slimming world again, I’m starting to lose the weight, my pregnant belly has gone and I haven’t had a single mouth ulcer in ages.

One of the other things I struggle with is eating out, I always seem to get bloated no what I eat, I have been trying to limit myself to eating out once a week (on weigh day) I use it for fry up in my local carvery pub as it’s one of the only places I can eat at and not get really bloated. Having set up my own cleaning business just under a year ago, I find that sometimes I am too tired to cook and will either go out for lunch or tea depending on what time I finish.

I have a few favourite places I like to eat that have some good gluten free options on the menu. Eating out does have a direct impact on my weight loss as I tend to retain a lot of water. I am trying not to concentrate too much on what the scales say and more on how my clothes feel, as it can be very disheartening when you see the scales stick for 2 weeks in a row even when you have been really good on your diet. i’m around 15 and a half stone now so I haven’t got a huge amount to lose.

My coeliac disease story

I have set myself a target of 12 stone I may decide to lose a bit more once I get to target, but I don’t know I may get there and feel comfortable and stay at that weight. I have also started to run, I used to be able to run a fair bit on the treadmill but I haven’t been to the gym in a long time because I just don’t have the time with work.

Finding the energy to do any form of exercise after cleaning houses for up to 7 hours a day is a task in itself. I have a small park in my street so when I get up in the morning I go over and take the dogs for a run before work (if I haven’t got a really busy day) it is a lot harder than running on the treadmill, but I’m determined to get this weight off now, so I am going to persevere and as they say Rome wasn’t built in a day ha ha. i’ve included 2 photos one of me at my biggest and one taken a few weeks ago hopefully I will have another after photo in a few months when I hit my target.

See what i’m eating to lose weight

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