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Members’ Stories

Over the years many of you have shared with us your stories and experiences of living with the coeliac condition. Here is a selection we thought you would find both helpful and enjoyable, from the early days of diagnosis to those of you who have been living gluten-free for years!

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What do you mean I can’t eat bread?!

It is just over 6 years since I was diagnosed with Coeliac disease, my symptoms were not obvious and it was thanks to the keen eye of my Doctor that it was spotted. (I had been a little run down for a few months and my only real problem was that my mouth was sore and failing to heal!!)

 It was all a bit daunting in the beginning, as I had no real knowledge of the disease. Luckily for me, my mother-in-laws friend had lived with coeliac disease for a long time and I was so grateful of her advice. Although I was having a nice glass of chilled larger on the night of her visit and I was very disappointed when she explained that it could no longer be my "refreshing" tipple! (I have since found other substitutes!) 

My diet is far better than it was before as I have to plan ahead, especially when thinking about lunch when I'm in work, but that is not a problem and must save me a fortune as there is no temptation for me to buy those ready packed lunches. Of course I have my staple products, like my bread and pastas, which I get on prescription, I love my fresh white bread from Juvela and drive myself nuts when I have left it too late to put my prescription in and have to manage a few days without it! 

All in all, being coeliac has enriched my life, I have met some wonderful people who I would never have known, if I had not had been Coeliac. My knowledge and shared experiences of the disease and diet has grown tremendously. My husband, family and friends have all been amazing and go to great efforts when catering for me that my meals are all completely gluten-free, they have in fact relished the challenge.

 Being Coeliac is a learning experience and following the gluten free diet will ensure that I remain healthy!

Liz, Cheshire

Getting diagnosed was a nightmare…

Ever since I was 4 years old (or maybe even sooner) I have suffered from chronic migraine. I went to doctors, GPs and specialists but they could do nothing for me, as the drugs available at the time were experimental and extremely expensive. I am allergic to codeine, and I had so much paracetamol growing up that it became completely ineffective. Ibuprofen was my best over-the-counter painkiller but now my stomach simply can't tolerate it any more.

 Later in my early 20s I was diagnosed with Poly Cycstic Ovarian Syndrome. A conclusive scan was never made to confirm the diagnosis but my hirsuitism, elevated free testosterone levels and general stockiness was evidence enough. The only treatment offered was "a hysterectomy and HRT" so I learned to live with it.  

Over the years I'd had excruciatingly painful bowel movements and variable consistencies (apologies if you're eating) and was eventually diagnosed with Irritable Bowel Syndrome. I put it on the list of everything else that was wrong with me and tried to muddle along to the best of my ability.  

I got a job as a Prison Officer and although it was an extremely demanding job I absolutely loved it, and planned to make it my career. Sadly, fate had other ideas and I gradually began to lose strength and endurance, which had always been my greatest powers previously. Putting it down to general fatigue, I went home after a shift at work, developed a migraine... and was off work for 9 months. We suspected ME (aka Chronic Fatigue Syndrome) and saw a specialist in London. He said "right well we'll get you tested for Coeliac disease, just to rule it out, then I can give you a definite diagnosis of ME". Well blow me down if the endoscopy didn't come back positive! 

A year on and despite my stringent attempt to be 100% GF (I drive waiting staff at restaurants crazy and am even a bit harsh on my hubby at home!) I am still experiencing the fatigue and migraines, but my IBS disappeared virtually overnight. I had hoped that the Coeliac would prove to be the root cause of my various ailments, and provided I'm not doing something seriously wrong this has proved not to be the case. But it does go to show that the road to diagnosis can be a long and winding one! Thanks for at least providing some decent bread for me to eat

Jenny, Daventry

I had symptoms from childhood…

I think I'd always had symptoms, even as a very young child. I remember being treated for 'poor growth' - and had to stand in front of some sort of lamp for about an hour or so once or twice a week - not sure what the doctor expected that to do for me - but I can remember my mum saying it was because I was so small and sickly!

Then I would pick up every illness going - so they always just treated me for whatever it was I had at the time - whooping cough (at 4weeks old) then mumps, measles, chicken pox, German measles, jaundice, rheumatic fever - the list was endless! My mum used to say someone only had to look at me and I'd catch something! I had two older very healthy brothers, so it must have been hard for my mum to have finally had her little girl, only to find out she was a weak sickly thing. I'd always had headaches, but thought that everyone must be the same, so put up with a lot of it without saying anything. I also suffered with travel sickness, and whenever my parents took me anywhere I'd be ill either before we got there or on arrival - if I hadn't fallen asleep!

As I grew older, I began to realise that life was a struggle - and I had to try hard to keep up with my brothers and friends. Then after I married, things came to a bit of head when we moved house and my headaches were so bad and I was so tired all the time that my family insisted I get some help. When I saw the new doctor I'd registered with, his first words to me were "God, you look dreadful!"... What an opening statement! He told me that he thought I may have either a brain tumour or cancer, as I looked so ill and was very gaunt. He sent me for all sorts of tests, which kept coming back ok but he wouldn’t give up until he'd got to the bottom of my illness. By this time I weighed about 6½ stone! It took six months before I was finally diagnosed with coeliac disease, and I've never looked back, I love baking my own gluten free bread with the Juvela mixes and am an active member of my local coeliac group.

Carol, North Wales

I was diagnosed coeliac after my second pregnancy…

After giving birth to my second baby I had a tough time with my health, I felt generally unwell and suffered various symptoms and illness. I couldn’t work out what was wrong with me.

In the 6 months after giving birth I lost 4 stone of weight in 3 months. Luckily my doctor had another patient with coeliac disease and decided to test me, the test showed up positive and after my biopsy it was confirmed. The doctor said the traumatic labour with my 2nd baby brought it on.

That was 18 months ago, I'm getting used to living gluten free, I really like the Juvela bread/cake mixes, most other gluten free foods are like cardboard! I’m now pregnant with my third child and being tested for Crohns disease too!

Beckie, Wirral

I never want to feel that ill again!

I was 18 when I was diagnosed in September 2008. I went to the doctors because I had a sore throat for months that would just not go away. I saw a
locum doctor who did blood tests in case I was suffering from glandular fever among other things.

When I went back to see my usual GP to find out my results he told me that my red blood cells made them think that I may have coeliac disease and asked me if I had heard of it before. I had, but I didn't know much about it and I was quite shocked to find out that it was a lifelong condition. I had been hoping for a quick fix! My GP did more blood tests to check for antibodies and about a week later I got the results that it was very likely I had coeliac disease.

I went home after that appointment and pulled everything out of the cupboards that had gluten in, the cupboards were almost empty. I thought I wouldn't be able to eat anything anymore. Then I spent hours on the Coeliac UK website trying to find out more about the condition. I had been feeling ill since I was around 14 and now all my symptoms were starting to make sense, I had thought I was just a sickly person but now I found myself hoping that I did have coeliac disease just so I could feel better!

Waiting for the biopsy was the worst part, I was terrified and knowing I would have to keep eating gluten whilst I waited for it was awful, now I knew what was making me feel ill I just wanted to stop eating it. I considered not having the biopsy and just buying gluten free foods myself, but I wanted a diagnosis so that I could be sure gluten was the culprit.

I eventually had the biopsy and it was such a relief afterwards. The biopsy wasn't as bad as I had expected, waiting for it was definitely worse!

A couple of weeks later I had an appointment at the hospital and they confirmed that I had coeliac disease. They were very helpful and I had an appointment with the dietician who helped me a lot. She gave me loads of samples and contact details for various groups. My mum cleared out a cupboard at home so that we could keep gluten free food separate and avoid any mix-ups.

The first couple of weeks were much better than I thought they would be, I was amazed by how much better I felt and I was enjoying having the energy to do things I loved.

The worst part for me was after the first month or so, when I felt better but the diet was hard. I had just started full time work the week after diagnosis and I was finding lunches extremely difficult. I also enjoyed eating out before I was diagnosed but now I found myself avoiding going out because it was too awkward and embarrassing. Some people I knew didn't seem to believe that I could suddenly find out I had Coeliac Disease at 18 and others were trying to be too helpful, which I didn't want when I was trying my best just to feel normal.

Now a couple of years later things are much better, I still have the odd day when I want something I can't have, but I cope with it a lot better now and I would never eat gluten deliberately because no matter how nice something might taste I never want to feel that ill again!

Jules, Northamptonshire

Things have changed a lot since 1972…

I was diagnosed with coeliac disease in 1972 when I was just 6 years old.
I was very poorly after my Mum and Dad split up when I was 5, initially it was all put down to stress and not coping well, however after numerous tests over a 12 month period the doctors discovered that I was coeliac. Back then it was bread in a tin and not very nice food, but my Mum was really good at making my meals exciting.

Over the years things have changed so much, I remember when Marks and Spencer first did a gluten-free sausage it was such a treat for me.
Now it just amazes me how much is available and that you can go to the shops and there is so much to choose from. I have been using Juvela for many years now and find all their products really good and tasty. If ever I am stuck for a recipe Juvela always has an idea.

My brother has now been diagnosed as a coeliac as well, he began to feel tired and under the weather so they sent him for tests it came back as positive. It was discovered that my Dad was a carrier and that both my brother and I have it.

To all those out there who have not been diagnosed for very long it may seem that the it is impossible to get to grips with things but it will become easier, enjoy cooking and experimenting with all the different foods you can eat. I find with all the products available now on the market it is very easy to live life with coeliac and be healthy.

Nikki, Wiltshire

I'm looking forward to feeling human again!

Have just been diagnosed this week after spending the last few months feeling really ill. I am also in recovery period from an Ilestomy so a double wammy for me!!
Had never heard of coeliac until this week and think it will take a bit of adjustment. I felt really good after the Ilestomy and adjusted well. In November last year I became unwell and if it was not for the persistance of my dentist this would not have been diagnosed. Dont know how long it will take for me to feel human again but looking forward to it.

Lizzio, Renfrewshire

Fit and Gluten Free!

I was diagnosed with the coeliac condition in 2000 and thought my bread eating days had come to the end, in fact all eating habits. But I was truly wrong and I steadily put on weight, in fact my wife (Hazel) could not believe the change in my attitude to food at mealtimes! From someone who once picked and left food, I ate like somebody who really enjoyed every delicious mouthful. My weight in 1999 was approx 10st. I am now fighting off 13st by exercising at the gym, my skin is clear and I'm up and away in the morning... It's great to be fit and GLUTEN FREE!

Jiddey, Gwynedd

Coeliac Disease can run in families...

I was diagnosed as being Coeliac 16 years ago. It took several years to be finally diagnosed. I see a consultant every year at my local hospital where I get a thorough checkup. It was on one of these visits that I asked him about whether any of my family could also be coeliac. He suggested that my identical twin sister could be coeliac as she has the same genes as myself and advised that she should be tested. I live in Manchester and my sister lives in Yorkshire so we dont have the same doctor. My sister didnt present with any of the symptons that I had experienced and was rather reluctant to check out whether she could also be coeliac. It was only after several years that she finally was checked out and found that she is also coeliac. Two of her grandchildren have now been diagnosed coeliac as well. It just shows how easy it is to 'get through the net'.

As you can imagine over the years gluten free food has improved and there is so much choice available now. I felt so much better following a gluten free diet after the first two weeks. I love the freshly baked bread from Juvela. When any non coeliac mentions the 'horrible' gluten free bread they have heard about, I let them know about Juvela fresh bread. I cant wait to try the new fresh Juvela rolls. I am including them on my next prescription order.
Thank you Juvela, I can now enjoy a delicious sandwich without toasting the bread!

Anne, Manchester

I thought tasty bread was out of my diet...

My story is very similar I’m sure, to a lot of other Coeliac sufferers in that, I was devastated to learn that I had the disease, particularly because I have, for years, baked my own bread at home. My family love the bread as much as I do and to be told I couldn't eat it anymore was a tragedy! So, I set about trying to invent recipes for bread. After disastrous results and after many bins were filled, I resigned myself to the fact that tasty bread was out of my diet!... that is until I received a sample of bread from Juvela. Oh my gosh! I can’t tell you how much I enjoyed that bread! Now my husband is jealous of my diet instead of feeling sorry for me!!

Susan, Berkshire

My son was undiagnosed for 2 years...

My son was diagnosed with coeliac back in around 2007. He was 3 years old at the time, he’s now a healthy typical 5 year old.

Jake went through the mill when his illness went undiagnosed for 2 years, he lost all his weight, was quite virtually skin and bone, and he had no energy and would lie lifeless for majority of the day. He wouldn’t eat, he would just sleep and I hardly heard a word from him (not your usual 2-3 year old).
Looking back now he was so ill and poorly, I had him up and down to the hospital numerous times only to be told he chronic constipation???

Only one particular day a different doctor came on the ward and immediately said he looked like he had coeliac disease, rather than feel worry when he told me
I felt elated after so long of not knowing what was wrong with my baby. I wanted answers and now I had more or less had them, it was a lead.

They immediately sent off for tests and of course they came back positive. We immediately put Jake on a gluten free diet and within 2 days he was running, walking, talking and doing all the things he should of been doing! I used to sit and watch him eat... mesmerised because I hadn’t seen him do it for so long!

I thank companies and food providers like Juvela, because without them life would be a lot harder. He now can eat the same as us without feeling left out. Thank you Juvela, keep up the good work, I can quite easily say that you are changing people’s lives for the better. People like you have given my son the chance to live a happy normal life.

Grateful mother, Lancashire

I was only 7 months old when I was diagnosed...

In 1970 I was one of the youngest people diagnosed with Coeliac disease at the age of only 7 months old. After going onto solid food I became very ill not holding my food and losing weight. I ended up in hospital where I was put onto fluids, so I began to perk up. They would then start to feed me again and so the process continued. After nearly dying, due to being so young my Grandmother, who was a trained nurse, read an article about Coeliac disease and told the doctors and so I started on my diet.

When I was about two years old I had to have a camera down my throat, which I still remember to this day. This confirmed I had coeliac disease.

As I grew up I obviously had no alternative food products and had to learn what I couldn't eat a birthday parties etc. This in turn created a great interest in food and cooking. At sixteen I trained at Westminster catering college for 3 years and have worked as a qualified Chef for over 22 years and now run my own Catering business!

I do think in someways it's easier to be diagnosed at a young age as what you don't know you don't miss!

I have always used Juvela products from when I was very younger and they continue to be the best for taste and texture by far.

Kevin, Bedfordshire

Super gluten-free cakes!

I have always used Juvela mixes since being diagnosed in 1994, making all my own bread, cakes and biscuits. My family think my cakes are super. Recently my 10-year-old grandson's school class was organising a cake competition and he asked me to make a cake. The recipe was for a Victoria sponge and only the ingredients stated on the recipe had to be used. Having no self-raising flour (as I never buy it) I decided to use Juvela white mix and guess what - I won First Prize! My grandson was chuffed to bits.

Dorothy, Isle of White

Finally, a diagnosis!

My daughter is 9yrs old and was diagnosed with coeliac in June through blood work and a biopsy. She has suffered from recurrent UTIs since she was 4, followed on by bladder, stomach and bowel problems. After numerous treatments she eventually went for an enema in March which didn't help.

Her regular doctor retired at the end of March. The new doctor took one look at my daughter (distended tummy, skinny arms and legs) and at her symptoms and immediately ordered various blood tests including for coeliac disease. The tests came back in June, her bloodwork for coeliac was through the roof! After her biopsy was done in July the doctor said he could see damage done to her villi and that he was sure it was coeliac. Results proved positve 2 days later.

We're now on day 5 of gluten free, and to be honest, I haven't see much change yet. I'm just praying that she'll get better soon. My two younger boys blood results come back next week. Mine and hubbys results were negative despite me having symptoms too!

Fingers crossed for a happy, healthy future!