Suzy and Gus Clode

Angie Francis

Jean Foster

“I'd like my story told as I had a long weary journey to diagnosis. It started in 1969, when age 19 I worked as a Goods Inward Clerk in a factory, and the girls on the production line bulldozed me into becoming a blood donor. Being terrified of needles I wasn't a willing volunteer!

“Anyway off I went after plucking up so much courage you would not believe to "give" a pint of blood - I need not have worried, after taking a sample it was discovered I was anaemic - then followed on the rest of my NON Coeliac life for nearly 30 years.

“As they say, to cut a long story short, I started off on Iron Tablets, then in 1971 I had my first daughter. After her birth I was always tired but put that down to being a new mum, my husband was in the RAF so was away a lot. Then I had Duodenal Stomach Ulcers - still anaemic by now on Vit B6/B12/Folic Acid+Iron. In 1973 had my second daughter & after her birth I went from 9stone down to 7 1/2 stone in 6 weeks. My RAF GP just kept fobbing me off but I knew something wasn't right as I had friends in the forces who were trying to shed baby weight but mine was dropping off. And I was a strange colour - yellowy/grey...not pleasant!

“Finally I went back to the GP who by now was "fed up" of seeing me - he didn't say as much but it was pretty obvious, so he just threw an X-Ray appointment slip at me. I grabbed it & said THANKS! Lucky for me & him we were living at RAF Halton/Bucks at the time so I asked my friend to come & watch my girls (2yrs & 7/8 weeks old) whilst I nipped over to the hospital (more or less across the road from our married quarters) to get an X-Ray. That was about 11.30am, and at 2pm the Station Medical Officer came to the door. My friend was still in & he asked her to leave the room. I thought something terrible had happened to my husband as he was abroad. The SMO (only visits with bad news!) said "they want you in hospital IMMEDIATELY"

“Well I was shocked to say the least but again a long story. I had Tuberculosis on both lungs. Thankfully after 3 months in isolation, many drugs tried, tested & failed, I ended up having Streptomycin injections in my bum daily. I was finally released back home, I hadn't seen my girls since I was taken in, it was a strange reunion.

“Life went on still very aneamic but I thought it was "normal" to be permanently tired and just kept on taking the pills for years & years. Over the next few years I got divorced as I "couldnt be bothered" with anything, just plodded on. I met someone else & over a period of years tried for another baby, but had three miscarriages. Finally in 1979 I had my third daughter. After another failed relationship, I decided to move back home to Cumbria, where I was still under par-regular visits to my GP for blood tests. This time it was getting worse and I was threatened with blood infusions. Then one time my GP rang & said to come down to the surgery. Me thinking the worst (Cancer) he said "something " has showed up in the last test & he was referring me to a Gastroenterologist. I didn't care as long as it WASN'T Cancer. It wasn't, it WAS Coeliac Disease.

“So now age 62 I feel like Ive been plugged into the National Grid. I've got more energy than I can ever remember having. I don't take any pills at all & hardly ever visit my GP now, but I feel sorry for my girls as often I couldn't be bothered to do stuff at a time when I should have!

“I'm so grateful to be a Coeliac that 8 years ago I accepted the offer to take over being Group Organiser of our local voluntry support Coeliac Group in West Cumbria, as I'll never forget when I was first diagnosed how helpful everyone at the meetings were. I love helping others, especially the newly diagnosed. Another plus is that I met Wilfred at Derby University two years ago when he presented me with an Awareness Raising Award - the icing on the cake! Thanks also to people like Wilfred for producing products that are so good even better than "normal" foods!!!"

Anne Holmes

“June 2nd, 2006, I finally had a colonoscopy and was diagnosed as coeliac, and had a small polyp removed.

“I had been having pain under my ribs on the left side mainly for a couple of years and the Dr. had organised an ultrasound of pancreas, heart, lungs and everything else in the stomach and everything was OK.

“Then early 2006, we were away on holiday for month and probably eating more sandwiches, fish and chips, hamburgers than at home. Then I started to feel sickly in my throat and not very hungry and soon started with diarrhoea (which was my main problem); so I ate simple food, bread & butter!!! Late April I was feeling tired all day, sickly and weary so went to the Dr. who diagnosed a bug, and suggested I take Powerade, liquids and soup. Back again as diarrhoea badly and in bed, pain under ribs and this time he sent me for a urine and bowel test. The bowel test had not returned so after being very sick and feeling awful I went to the surgery early and was taken in to see him immediately.

“He gave me an injection to stop being sick; in less than 8 mins. I was sick again "that's not meant to happen". He put me on a 1 litre drip and I was sick again - with the Dr and nurse watching me! - then another 1 litre. On going in to see him again, he organised for an emergency colonoscopy the following week. I went home shortly after and lost all the liquid. During the colonoscopy the surgeon removed a small polyp and then it was 2 weeks before I could see him again. The result was that "it was suggestive of coeliac" and recommenced I see a dietician, which soon fixed the problem.

“The diagnosis did not surprise me too much as I have a great niece who is coeliac. She was a bonny baby, like her mother and aunt, until about 9 months old (when I guess she had been started on solids) then she was often projectile sick. Around 2 yrs. old, a friend of the family, showed her mother a book and said he thought Amy was coeliac, so her diet was changed and it made a difference. However, an appointment had been made with a paediatrician and when mother rang to say she thought she had found the problem, mother was told to put her back on her old diet. Poor Amy. Coeliac was the diagnosis.

“Soon after my diagnosis, my dentist sent me to a dental surgeon as, obviously, my gums were receding and gum disease was a problem. His daughter is also coeliac so when I mentioned not having any thing with gluten he understood. Now, I put that problem down to the coeliac years ago.

“I am a great believer in alternative medicine and when my husband was ill, with depression, for 4 years, early on when he was in hospital I developed shingles - the Dr. could do nothing for me and I suggested sleeping tablets. I tried them - no good - but I did go to a naturopath who helped enormously and some years later he mentioned watching my wheat intake; at the time I thought he was talking about my arthritis but now I wonder if this was not the problem. I did then make sure I only had bread once a day - but didn't realise, until recently, that the cornflakes I was eating also had gluten in them.

“I was in hospital l5 months ago for a hip replacement and very aware of what I could eat. However, one morning the nurses came in and asked me to take metamucil - which I remembered my husband taking - within 5 mins. I was violently sick. Later that night another nurse came in and said the metamucil had wheat in!!! And I was wearing an allergy wristband and it was on my notes.

“The coeliac society here in Australia has an annual Gluten Free Exhibition which is very useful - but being part of my great niece's family I had a good idea from the beginning what to eat.

“Oh, one more thing I forgot to mention again, l2 months after my diagnosis, I was over in UK visiting my family and visited a cousin's wife who had lost her husband, of cancer. She had prepared afternoon tea but I had to explain that I couldn't eat it; to my surprise, she said her husband had been diagnosed as coeliac some time before he died - so it must be in the family"

Susan and Esme Alibocus

“I first noticed something was wrong with Esme as a toddler. She often had diarrhoea and tummy ache. As this became more frequent I began to note it on the calendar and when I realised it was a couple of times a week I booked an appointment to see the doctor. Not much to go on at this point and she sent me home again. Gradually the episodes began to increase until Esme was having tummy ache then diarrhoea after every meal. I brought her back to the doctor, I think twice and eventually was referred to a paediatric consultant who diagnosed ‘toddler diarrhoea’ needing no treatment. This bearing in mind that the diarrhoea I described fitted the description on the coeliac leaflet word for word. I personally thought it must be a reaction to milk or wheat as she had problems with almost every meal but, despite a virtually casebook description of her symptoms and my suggestions he said it was unlikely and he wouldn’t perform a blood test as it was too invasive for such a small child. A couple of months later it was Easter and Esme was suffering so much, with school in September looming I demanded a test. This was done and I was told I would have a two week wait for results. I had a phone call in a day or so to tell me she had tested positive for coeliac disease, probably a year and a half after my first trip to the doctors. We took her to a London hospital for her endoscopy and subsequently changed her diet.

“Esme blossomed immediately that her diet was changed. She was so happy for a fortnight she never stopped smiling and didn’t cry over anything. Over the next couple of years we continued to have on and off problems though with skin rashes, a reaction to anything with codex in and what seemed to be a reflux problem. Help was difficult to get and much of her progress was down to our own trial and error with food (the dietician did not know what codex was). Esme had huge mood swings, tiredness and rashes whenever she was given the wrong food or had the slightest cross contamination. She ate her sandwiches at school amongst the crumbs of the other children and when I suggested she could have a tray with raised sides to keep her food from being mixed up with theirs I was seen as a neurotic Mum. One or two school dinner helpers were obviously annoyed by her food intolerance, didn’t really believe it existed and offered her sweets she couldn’t eat. Five years has passed since then and two or three years ago Esme improved enormously and now very rarely has any problems. I recently tried her on the bread with codex as the official level of allowed trace gluten has been lowered considerably but she still developed a rash.

“Shortly after Esme was diagnosed, on the advice of the consultant, the whole family was tested and despite the fact that I (never to my knowledge) had any side effects I was diagnosed. My mother had recently died from Lupus, a disease they suspect is linked with coeliac and so I was advised to change my diet for life. In the last few weeks I have been diagnosed with type 2 diabetes as well despite not fitting the usual categories so food has become even more of an issue.

“The gluten free diet is very easy to follow as long as you stay at home. Once you go out it becomes difficult, particularly quick lunches on the run. Family days out have to be planned around meals, mostly meaning we eat first as Esme is often ill even after a supposedly gluten free meal in a restaurant. Last weekend 10 of us went out for breakfast, three of us with coeliac. When we asked the manager to check the hash browns to see if they had gluten he announced to the whole restaurant that he didn’t know what gluten was and couldn’t be held responsible if we had a fit or something on his premises!

“A number one priority is to have food that tastes good without costing the earth. We also need food that isn’t overloaded with fat, sugar and salt compared to ordinary food in order to taste edible. We need to stay healthy too. Before we knew Esme had coeliac I was a mother who took care with the amount of salt, E numbers and additives I gave my children. It makes me sad that a lot of the gluten free food (not yours of course) that I have to give Esme now is full of them. I don’t feel that she eats as healthily as I would like. The manufacturers I look out for are Honeybuns cakes, who I believe have their own coffee shop, all gluten free (they are worth looking up – a very innovative company) and one called Clives which does pies and quiches etc. I hope this all helps – keep up the good work.

“Thank You for producing such a wonderful sausage! My husband and son both have Coeliac and I am always looking out for new things for them to try. Sausages are usually either over spiced or very bland but having seen Black Farmer Sausages advertised on Coeliac Uk website I was amazed and pleased to find them in my local Tesco! Well they (and I) loved them! They are, as my son said “better than normal sausages!”

Dennis Orton

“I was diagnosed as having coeliac disease in December 1996, and I have tried to keep strictly to the diet since that time.

“I have been a blood donor for over 40 years and prior to diagnosis, for a number of years, my iron levels were found to be low at some donor sessions, but not all. Sometimes I was given iron tablets and occasionally referred to my doctor, who again gave me iron tablets. I was suffering no obvious symptoms.

“In early 1996, my current doctor said that there should be an investigation, after I was again found to be anaemic. I subsequently had a biopsy taken from the gut, and coeliac disease was confirmed. By coincidence in the months prior to diagnosis I began to feel tired, and had a pale complexion. I also started to lose weight at a steady rate.

“Since being on a gluten free diet I have been told that my gut has returned to normal, I understand that this is not always the case. I now have to be careful to keep my weight down!

“The diet is controlled fairly easily in our home. My food, like sandwiches, are either prepared first or on a separate surface. I have my own toaster for example. I can easily get all my gluten free bread, pasta etc on prescription. Grandchildren have learned not to touch Grandad's food with their crumby fingers. Jam, marmalade, and other things in jars are served with clean spoons. 'No sticking your knife into a jar'.

“The main problems are eating out and going on holiday, especially overseas. Also manufacturers frequently changed their ingredients, and it is necessary to check labels even on products I have known previously to be safe for me. Life is much easier when 'gluten free' or the gluten free symbol are clearly displayed on the packaging.”

Elisabeth Heaven

"I was diagnosed about 20 years ago. Things were very different then, the only way to get GF food was by prescription, very expensive! The only things on prescription were 'to sustain life' ie bread, absolutely horrible and dry, flour, cakes, pastry etc fell to bits as soon as you tried to cut them or take them out of a tin. Pasta, ok but a bit odd! I remember my doctor telling me off because I was asking for too many prescriptions, he accused me of feeding my family with the items, as if they would have eaten it!! It was a real pain cooking two lots of pasta or pastry, so eventually I just gave up on bread or baked goods, even pasta, in fact I used to eat ordinary pasta it seemed easier. Then supermarkets started to stock things, what a revelation, cakes, biscuits, nice bread, flour that worked, so for years I just bought what I wanted and used it as I wanted, my family never really realised they were eating GF as well. Then shortly after my 60th birthday I was talking to someone about the food and she asked why I didn't have it prescribed as it was now free. I hadn't thought about it so bought the coeliac book and found lots of lovely fresh things I could have for nothing, even pizza bases, something I hadn't eaten for years. The flavour of the bread and rolls is magically better, it tastes almost like real bread and the flour actually works. I had often ignored the diet in the past and just eaten what I liked but now I can follow it.

"I have to admit that when we eat out or go to friends for meals I don't worry about it, I just eat what is going and seem to survive without to much trouble.

"It all seems a lot easier now and your sausages mean I can even eat those again after years of not having any or having to have them especially made. I shall be asking Makro why they don't stock GF products and your sausages - if we are going to get restaurants and hotels to supply GF food they will need to be able to buy them wholesale. I am hoping for another revolution in the catering industry. I certainly offer my guests GF if needed as well as other dietary requirements, and if I can do it so can anyone else!"

Lesley Coe

“My 11 year old granddaughter has just been diagnosed. She was found to be diabetic when she was just 2. Exeter Hospital who monitor her diabetes did a "routine" blood test. She was then called back for investigation under anaesthetic. The news that it was positive came as quite a shock as she is an active child enjoying gig rowing, playing hockey, life saving (she joined the Christmas Morning swim in Bude) and she plays trumpet in an orchestra. At the moment the whole family are coming to terms with the implications. But - one glimmer of hope thanks to the email you sent me. She loves sausages so, being a big fan of your pork sausages, I was delighted to be able to tell her she can go on enjoying 'The Best'! We are all searching the net for support and information so your email was most opportune.”

Tony Heywood

“After testing negative for the Coeliac blood test (apparently 5% of Coeliacs do!) I underwent various investigations including barium meal test, colonoscopy, bone density scan and finally endoscopy & biopsy. These were over a period of about 6 months and the results of the biopsy in October 2006 confirmed the diagnosis. I was 63 years of age.

“I suppose my symptoms began to be apparent in my early thirties when at times I suffered with painful bloating and wind. I couldn’t identify a particular cause & usually thought it was from eating over-rich food, or fatty food like pasties & pies. However, I did identify that eating only a few biscuits brought on painful bloating. Over time my worst symptom, diarrhoea, became more & more problematic to the point I was reluctant to go on business trips or visit anywhere unfamiliar. It was this that finally forced me to see my GP & started the testing.

“Living with Coeliac disease has been an eye opener and very frustrating but also, strangely, a new adventure!

“A new adventure in that I have found good gluten free food often tastes better, (for instance yours & other gluten free sausages, & gluten free fish & chips.) I have learned new skills, such as making my own bread & pizzas etc.

“It has been an eye opener in that I did not realise, until diagnosed, how much wheat and wheat products are used to ‘bulk out’ foods to ‘con’ the British public into thinking they are buying quality when they are really buying rubbish. For instance I have found that a lot of sausages contain less than 70% meat & the rest is rusks etc. No wonder the Europeans are contemptuous of our meat products when theirs often start with over 100% meat!

“Why do gravy mixes & sauces have to contain wheat? Apart from the problems for Coeliacs I think there needs to be a campaign to educate the public in what goes into their food; not just the artificial additives but cheap cereal additives that aren’t necessary & don’t improve the quality.

“Frustration comes from producers and caterers not clearly identifying whether or not their products contain gluten (or other allergens). Don’t producers realise that sufferers get tired of reading every single ingredient on a label & simply go for those that do clearly mark products? (like yours). Similarly Coeliacs find that staff in take away food outlets, restaurants & pubs generally know little if anything about Coeliac disease (or other food intolerances). Holding up a busy queue in a take away whilst staff try to find out what is or isn’t gluten free is embarrassing. Having a waiter/waitress in a restaurant or pub going backwards & forwards to the kitchen to check ingredients is frustrating. The result is we don’t eat out as often, or stick to places we know & who know I’m gluten free. Caterers who don’t identify which of their items contain gluten lose the custom of Coeliacs. They may think that is only 1% of potential customers but if (as in my case) we go out as a family it’s not one but five customers they lose! A restaurant I visited in Dublin identified on its menu (with a simple code) which items were gluten free, nut free, vegetarian etc. As this was posted outside the building I was able to enter, confident that I could make a gluten free choice without embarrassment or frustration. If they can do it why can’t all?

“Whilst I can get good gluten free alternatives for most foods & have a good choice of products from supermarkets like Sainsbury’s’ & Morrison’s the thing I miss most is not being able to go into a pub and enjoy a pint of real ale! The problem is there is no reliable test for gluten in beer so the Coeliac society & specialists play safe & say beer is out. Whilst there are gluten free beers (& a couple aren’t bad) in supermarkets the number of pubs that sell them are few & far between. Certainly none in my area. I wish more of the small independent breweries would have a go at producing gluten free beers & get them into pubs.”

David McIlfatrick

“I'm 42 (born August 1966) and was diagnosed in June 1992. So nearly 17 years ago at the age of 25. I just got fed up with feeling like I was living with a permanent hangover and having constant diarrhoea. My GP put me through a load of tests, the last of which was a biopsy for Coeliac Condition which proved positive. I think in retrospect, I'd been suffering with less severe symptoms for several years. At university (1984-1987) I was more than occasionally described as "white and spiteful" because of my appearance and temperament - especially in the mornings! And I look terrible in my graduation photo!

“The diagnosis was tough to accept at the time, as was the GF diet, but I got over it eventually and just got on with it. It's a lot easier these days with awareness increasing, food labelling improving and a much better range of much better quality products being available. In a way, it's a blessing in disguise as I eat much more healthily then I did pre-diagnosis. Most "fast food" is not gluten-free, so I just don't go there! There are (mainly) acceptable GF alternatives for most things now (not least your delicious sausages)! I still miss croissants though!"

Rodney Tucker

“I was diagnosed with coeliac disease nearly a year ago after suffering several years of upset stomachs caused by what I thought were tropical bugs from my overseas development work. I should have realised that this was not the case since it was always worse when I came back to the UK where a richer diet, often full of gluten is more prevalent. On seeing the dietician I realised that it would be quite easy to adapt my diet, as there are more and more gluten free foods available now than even 12 months ago.

“I like my sausages and have always enjoyed black farmer premium pork so was very pleased to find I could continue to eat them. My diet has always consisted of lots of fresh fruit and vegetables so I have found it easy to adjust and I get my bread on prescription. I have learned to be more careful reading the small print now to avoid products that contain the slightest trace of gluten, which can cause much discomfort when your body is gluten free."

Malcolm Bowman

“When I complained of being constantly tired, my G.P., rather than dose me with pills, wanted to discover why I should be tired - and a blood test revealed anaemia. The next step was to discover why I was anaemic, and an endoscopy showed that I was a Coeliac. The change of diet was difficult for my family - and even worse for me! I had enjoyed baking our own bread, but the Prescription bread was like eating cardboard: I quickly became an expert on Baked Potatoes.

“Over the twenty years I have noticed a big improvement in availability of G.F food items - cakes, pastries and prepared foods such as sausages, etc Though many Supermarkets stock lines (like tinned meats) which seem determined to contain wheat flour (it is cheaper than corn flour!) - M&S is not good - the development of the “Free From” sections is a move in the right direction. Mind, some of the so-called Free From do contain rye or barley elements - care is still needed.

“The bread problem was solved overnight when my wife bought me a bread-making machine (At least she no longer had to put up with my moaning about sawdust bread!) Marvellous! I could enjoy a hot, buttered crust at last. Bread rolls I still have to master.

“The local Coeliac Group is invaluable for newcomers to the scene, for it passes on tips and wrinkles about diet and local suppliers of G.F items and can apply some pressure on hospitals and even restaurants to meet Coeliac needs - hence the importance of Awareness Week. For extravagant indulgence I can recommend the Honeybuns range of goodies - but perhaps they are only available in the South (it is a Dorset company)."

Linda Grinter Family Case History

“My sister Judy and my brother Richard were born in 1944 and 1945 respectively and as babies did not thrive. Judy was particularly ill with daily stomach upsets and sickness and became very malnourished with a swollen belly and matchstick arms and legs. Doctors were unable to diagnose the problem and Mum took them from hospital to hospital for various tests to no avail until in 1947 our Bournemouth GP referred them to Great Ormond Street Children’s Hospital in London. Here Dr Wilfred Sheldon had just discovered a connection with gluten and malabsorption and Judy and Richard were one of his earliest patients. However, that was not the end of the problem as manufacturers did not know how to isolate gluten in flour and other products. They were put on a soya diet which was very hard to use and in those days food was still on rationing after the war. Also a banana diet was introduced and we had huge hands of green bananas ripening in our kitchen!

“Richard and Judy’s health began to improve and they grew normally. It was discovered that my father also had the same coeliac disease, though I seemed to be healthy. Eventually gluten-free flour came on the market and Mum was able to make bread, cakes etc with it and it was used in all our cooking as well as cornflour.

“My father found it difficult to stay on a gluten-free diet and consequently died of complications from coeliac in his late 50’s. I started to develop symptoms in my 30’s and had the blood test, which is not conclusive, and later a jejunal biopsy which was negative. I was later diagnosed as having Irritable Bowel Syndrome which is a form of coeliac disease. My own daughter also developed symptoms in her 30’s and was diagnosed as coeliac and has been on a gluten-free diet ever since. Her own daughters have been tested and so far appear to be clear.

“My brother and sister are now in their 60’s and have developed further complications arising from coeliac such as lactose intolerance, thyroid problems and osteoporosis though they stick strictly to their gluten-free diet.

“Over the years there has been a greater awareness of coeliac disease and manufacturers have produced a huge range of products which makes life a lot easier for sufferers. Unfortunately, some manufacturers are not quite scrupulous enough and products get contaminated with gluten leading to the unpleasant symptoms of coeliac. The disease is well recognised by doctors and nurses and young babies are screened for it when they are weaned and there are support groups available throughout the country under the auspices of Coeliac UK. In all coeliac disease is a lot easier to manage nowadays and sufferers can lead an almost normal life."

Ellen Gailhofer

“Since I was 18 I have had difficulties with ‘irritable bowel syndrome’, trying to lose weight and regular mild depressions. I also had a track record of lingering and chronic infections, inflammations and tendonitis.

“Due to food allergies I already had realised that wheat was not good for me and used a lot of spelt. That improved the situation a little bit but I was gradually putting on weight, constantly had chronic viral infections and tendonitis in my wrists and bad mood swings.

“My brother in the meantime developed bad Crohn’s disease, so helping him and my mother did become more important. I thought that my problems were small in comparison to his, so best not complain. Also, my mum having had nurse training in the seventies also reacted very strongly to me even suggesting I might be coeliac as she associated it with very sick and underdeveloped babies. So that for a while stopped me following up that information.

“Giving up university, training in hotels in Germany, sorting out my life, moving to London and finding work there also took priority so health problems were pretty much ignored for quite a long while. I mean, I did not feel ill constantly but there was always something that was not quite right. I thought I was unable to lose weight and was more on the slow, sluggish side and that was that.

“Then Spring 2007 I developed a very itchy skin rash on my knees. After a while I went to see my GP (who knew about my ‘irritable bowel syndrome’ and the mild depressions) who suggested trying the various creams, which of course all did not help. It then spread to my elbows, knuckles and nose, so anywhere where there was not much skin over a bone/joint. I realised that there was a connection between food/drink and the condition but was unable to pinpoint it. So three months after this rash starting I got on the internet again and started researching Coeliac disease and trying to find my skin condition and on a page about Coeliacs with Dermatitis Herpetiformis and finally struck gold. That was me!!! That was exactly the symptoms I was having. I proceeded to the information about gluten intolerance and felt great. Finally an answer.

“So the next day I went to my GP and said that I suspected I was Coeliac. She just went fine, here’s the blood test form, see you in a few weeks’ time to discuss the result. I immediately cut out gluten (or thought so) but there was an instant improvement. A few weeks later I was back to discuss the results which showed that I had the ‘unspecific’ antibodies and that normally she would not confirm the diagnosis but with me immediately improving on reducing the gluten and the skin condition she told me I am Coeliac.

“After the initial delight at finally knowing what was wrong with me came a tough time of figuring out what I could eat and where when away from home, finding the books (knowledge is power, do not ever let anybody take that away from you) and educating partner, family, friends and work. I guess I am lucky to have such a supportive partner who is proactive on the topic, rather than just doing what I tell him to, or even worse, leaving because the going has got to tough.

“However, the first year and a half was very much an uphill struggle. I felt very much alone. The GP was quite blasé about it, my gastroenterologist was hard to get hold of and on matters regarding the DH her comment was ‘Oh, do you currently have it, I have never seen it in real life, only on pictures…’. By the time I finally got an appointment with the dietician I was already self-sufficient and did not need her help any more.

“By now I would say I am a coping well, being able to bake, cook and go out safely. I still get upset at times when calling up restaurants to find out if I can eat there and they are being horrible over the phone, but that fortunately is in a minority these days and people usually are very helpful and try to accommodate as much as possible. (Ok, a friends wedding where I had to miss out on the wedding cake, that was tough, but hey, I had custard cream biscuits instead…)

“I have just a few items left that I still miss, like German Pretzels (the big ones) but most of those things, once I was able to have them once, it’s fine.

“In total I would say my life has really improved since my self diagnose. I am finally able to lose weight, having completed my first half marathon, signed up for the next one and am planning to run a marathon in autumn next year. I probably would be fit enough earlier but just want enough time to sort out the food and drink situation required for a marathon in peace and comfort.

“I feel alive again, am far less prone to depressions, am much healthier and am in general a happy, content person who since last year October is officially completely gluten free. The nicest blood results ever. (Also I am less afraid of becoming pregnant, now that I know what needs to be considered and provided for, as I hope to be able to have babies in a few years time).

“Certainly there is something to be said for the old Chinese proverb ‘one illness, long life, no illness, short life."