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Coeliac disease, a year on from diagnosis

Why coeliacs should be treated like vegetarians

Whether you’re a coeliac or avoiding wheat or gluten for other reasons, life can be tricky,  I’ve learnt a lot from fellow avoiders of the grain and some of them have been kind enough to share their experiences on here via A Gluten Free And Gorgeous 5 minutes with... So I’m pleased to welcome our first man (yeah!) to the spot.  Kevin Gollop’s Twitter bio says he’s a massive Plymouth Argyle fan and from his blog,  Gluten Free by the Sea it seems quite fond of Pizza too!

gfkev 300x300 Coeliac disease, a year on from diagnosis
Coeliac Kevin of Gluten Free by the Sea
1. Are you Coeliac or gluten/wheat intolerant?

I am a coeliac diagnosed through blood test and biopsy

2. When were you diagnosed?

I started really suffering in Easter 2011.  During a family holiday to Dorset I spent most of the four days inside public bathrooms with stomach issues.  This settled down after a week but I never really recovered.  My side and stomach were painful and tender, which I thought was just a hangover from the Easter stomach problems.

Things took a turn for the worse when I started passing blood in May.  A series of tests followed including liver scans and eventually a blood test showed coeliac disease.  A biopsy followed at the end of September and a month later diagnosis was confirmed.

3. How long had you been suffering for?

I think in hindsight I had been suffering for years without realising.  I was never really that ill until Easter 2011, but I can now look back and see a number of signs.  I had started taking probiotics as long as five or six years ago due to a weird discomfort in my side, which seemed to go away.  This is the same discomfort I was experiencing whilst I was being diagnosed.  Around the same time I started using mouth wash as I was getting a lot of ulcers, which I now know to be another symptom.  I also remember getting occasional palpitations, which I now get when glutened.  I would often be tired or have minor stomach upsets, but I just put this down to lifestyle and working away a lot at the time.  All minor issues really, but it never occurred to me they were connected.

4. How has diagnosis changed your life?

In the period between my positive blood test and my biopsy (about 3 months), my health continued to go downhill.  I was so fatigued that I would be struggling to stay awake at seven in the evening.  The stomach pains got progressively worse, I was getting joint pain and I was depressed about my health and having to continue to poison myself with gluten.  I was also depressed at the new lifestyle I would have to lead gluten free.

So one year on the immediate impact of diagnosis is positive in that I am feeling so much better.  All my symptoms are virtually gone, though there are of course days when I don’t feel my best and accidental glutenings along the way.  I have also enjoyed becoming part of the gluten free community, and now like to think I am starting to help others by passing on my knowledge.  I also think I generally lead a healthier lifestyle now as a result.

The biggest negative has been losing the ability to be spontaneous.  I always go everywhere with either a plan of where I am going to eat or bring my own food.  I miss just being able to pop in somewhere and grab something I fancy.  It also makes me sad that I now dread going to things which should be fun due to food concerns.

5.   What’s been the worst experience of having coeliac disease?

From a personal point of view it’s eating out.  I get very anxious when eating outside of my home now and as I am quite shy I hate asking restaurants all sorts of questions when I go out to eat.  The reality is though that it is my health and I simply have to ask.  It’s getting easier the more I do it, and I always try and ensure I go to somewhere that I know is “gluten free friendly”.  My last experience of eating out spontaneously was eating at a Greek restaurant in London with work colleagues.  The waiter assured catering gluten free would be “no problem”.  After we’d ordered drinks the waiter came over and asked if I could eat potatoes.  After a 15 minute conversation we came up with something I could eat, but the whole meal I was just waiting to get sick and it was just awful.

6. What’s the best advice you’ve been given?

When eating out always call ahead to make sure both you and the restaurant are happy with your dietary requirements.  Stating it when you get there can be a nasty surprise for both parties so best avoided.  Even if you have told them prior, always tell them when you arrive, when you order and when each course arrives.  It is your health and you cannot tell them too many times!

7. What do you think needs to happen to make being Coeliac/ gluten free more acceptable?

There are millions of people in this country that are coeliac, gluten sensitive, gluten intolerant or have wheat allergy/intolerance.  The restaurant industry is starting to listen but we need to keep getting the message over.  In my opinion every restaurant should have at least one gluten free choice marked on the menu, just as a vegetarian option is now.  Nothing against vegetarians (my wife is one) as the catering industry should look after everyone, but they have a choice.  We don’t.

8. How has the range of gluten free products changed since you first started using them?

I think it is fast improving all the time.  I have noticed a huge increase in the number of products available over the last year.  As well as national companies, it’s also great to see a lot of local smaller companies starting up in my area.  I am very keen to support local free from companies through my blog, and I think that’s important.  Of course recently we have seen the gluten free pizza chains launching GF products, and it feels like we are getting closer to being mainstream.  Hopefully other companies are taking note.

9. Name 3 of your favourite gluten free products

Sakata crackers

Pom Bear crisps

Baked to Taste pasties

10. Best place you’ve eaten a gluten free meal out?

Annie’s Supperclub.  Fantastic to eat in a totally gluten free environment and have absolutely no concerns or worries about what I was eating.  Magnificent food and great company with some gluten free Twitter friends.  Bruschetta in Kingston also well worth a visit.

11. What’s the most Bizarre / Funniest/ Strangest thing anyone’s said to you about being Coeliac?

Friends and family have been very understanding and supportive so I’ve been quite lucky with not too many strange things.  The one that sticks out though was when I rang a really nice Italian restaurant in Bristol to see if they could cater gluten free for me.  I was told “you cannot eat salad can you?”.  Needless to say I didn’t visit this establishment!

12. What would you like to have gluten-free rant about?

The lack of choice in supermarkets really frustrates me.  For example Sainsbury’s have just introduced their own range of gluten free pizza.  Great, another product on the market, but now they have de-listed the Dietary Specials pizza everyone seems to prefer.  Is a choice of two brands really too much to ask for?  There are repeated instances of this in other supermarkets too, and I have even seen that companies like Genius have had to stop making some products as they can’t get anyone to stock them.  Surely coeliacs deserve choice too!

Also a frustration is companies like Mars who don’t provide an allergy box, and will not include “may contain” warnings if there is a possible contamination risk.  This is made even worse when you contact their customer services team who tell you to read the label!

I could go on, but I think my 5 minutes is up.  Thanks for having me! Kevin.

 

polenta, Puffed Rice, Egg, Flour, Quinona

A gluten-free and gorgeous 5 minutes with coeliac gluten free b…

 Why do faddy eaters turn gluten free b into an angry lady?

Gluten free b is otherwise known as Carly b Talbot.  Her twitter bio states her fondness for cake as well as an occasional spot of kite-surfing and skiing.  Carly’s blog documents her experiences of living and eating out in London  as a coeliac as well as lots of serious taste testing of gluten free products. Find out why headaches lead to a trip to the Middle East and what her most awkward coeliac moments have been..

 

Coeliac Carly 225x300 A gluten free and gorgeous 5 minutes with coeliac gluten free b...
Carly of gluten free b

1. Are you Coeliac or gluten/wheat intolerant?

Coeliac(tivist).

2. When were you diagnosed?

With a blood test in 2009, and then again with an endoscopy in 2010.

3. How long had you been suffering for?

In retrospect for as long as I can remember with gastrointestinal issues which I had assumed was just normal! The real trigger was a trip to Mexico where I had a bout of food poisoning. My tummy never properly recovered and I started to get severe headaches. As the headaches were my primary symptom it took over a year of repeat GP visits to pinpoint the cause – they put it down to stress. I took a leave of absence traveling which they thought would help – funnily enough  3 months of getting ill and living on a diet of plain bread in the Middle East didn’t help at all!

4. How has diagnosis changed your life?

Aside from the improvement in my original symptoms, the impact on my mood and energy levels of going gluten-free was a complete surprise.

Of course it’s inconvenient and I have a few stumbles here and there, but there have also been fringe benefits of the coeliac lifestyle including the opportunity to experiment more in the kitchen (I will like quinoa one day!), curating an enviable selection of designer lunch boxes, always getting my meal first on aeroplanes, and eating a lot of cake in the name of ‘research’

5.   What’s been the worst experience of having your condition?

In no particular order – my top 6 awkward coeliac moments:

  • Offending a well-meaning friend who has put a lot of effort into making something gluten free for you, but then cross-contaminated it.
  • Holding up a queue in Starbucks as you interrogate the poor scared barista about ingredients & washing up.
  • Tears in the supermarket/restaurant/aeroplane because you are hungry and there’s nothing you can eat.
  • Refusing to kiss your friend’s crumb-infested baby.
  • Quietly re-gifting gluten-containing Christmas presents.
  • Oversharing your endoscopy horror stories loudly in public when you meet other coeliacs.

6. What’s the best advice you’ve been given?

It’s the subtle, knowing look my husband gives me when I reach to eat something I haven’t asked about or checked the label of.

7. What do you think needs to happen to make being Coeliac/ gluten free more acceptable?

Compulsory clear, prominent labelling on gluten free foods would not only help coeliacs, but would educate everyone about what is in the food.

8. How has the range of gluten free products changed since you first started using them?

Even in my short time, the range has increased dramatically, but there is still an emphasis on sweet products and an obsession in manufacturers with recreating gluteny snacks that cost too much. They are nice to have as occasional treats, and I appreciate the choice, but I would like to see a greater emphasis on availability and proper labelling of naturally gluten free foods.

9. Name 3 of your favourite gluten free products

In case of emergencies I always keep:

  • Daas blonde beer (“quick, I need a drink”)
  • Birds eye potato waffles (“bring hangover carbs, stat!”)
  • Perkier porridge (“I will be healthier today”)

10. Best place you’ve eaten a gluten free meal out?

I haven’t found anywhere in the UK that caters gluten free as effortlessly as the many places we visited on our honeymoon to New Zealand where dishes are marked as standard, and everywhere has gluten free bread at the ready.

11. What’s the most Bizarre / Funniest/ Strangest thing anyone’s said to you about being Coeliac?

“Wow, that must be a right pain the in arse?” – Well yes, sometimes literally!

12. What would you like to have gluten-free rant about?

Two things really get me worked up (raaarrrgh, angry lady!):

  • Knit-your-own-yogurt faddy eaters who are ‘intolerant’ to everything based on no medical evidence and needlessly restrict their diet. They are the people who quietly sneak a hobnob now and then causing confusion about what it means to be gluten-free and mean that restaurants etc. don’t take it as seriously as they need to for those of us with a genuine medical problem.
  • When everyone else is tucking into sticky toffee pudding, and I am served yet another fruit salad. Fruit is not a pudding!

 

polenta, Puffed Rice, Egg, Flour, Quinona

Coeliac Disease – Sam’s struggle for diagnosis

Is coeliac disease so hard to recognise?

This week I’m grabbing a gluten free and gorgeous 5 minutes with the resourceful Sam of The Happy Coeliac.  She has an all too common story to tell of her struggle to get diagnosed with coeliac disease but has come out of it healthier, happier and with a love for gluten free pizza!

This is Sam’s gluten free and gorgeous 5 minutes..

Sam The Happy Coeliac 225x300 Coeliac Disease   Sams struggle for diagnosis
Sam The Happy Coeliac enjoying gluten-free fish & chips at The Seine Rigger, Surrey

 

 

Are you Coeliac or gluten/wheat intolerant?

I am an (unofficial) Coeliac.

When were you diagnosed?

In 2010 I went to see my GP on suspicion of a milk or soy allergy,  was “diagnosed” with IBS and referred to a dietician.   After going on the low-FODMAP diet which excludes gluten, lactose and Star Trek sounding things called fructans and galactans which are found in many fruits and vegetables, I had a strong reaction  when I re-introduced gluten into my diet so my dietician recommended I get tested for coeliac disease.

In early 2011 I was tested for coeliac disease but was not told that I had to eat gluten for 6 weeks beforehand. Even though my test result came out borderline, my GP told me “you have coeliac disease” without even mentioning a biopsy.  I lived as a coeliac for 6 months until my new doctor (I moved house) pressured me to eat gluten again for 6 weeks so they could carry out a biopsy to confirm their suspicions and tell me what I already knew.  I refused and continued to stick to a strick gluten free diet.

How long have you been suffering for?

In hindsight I had been suffering all my life.  Throughout my childhood and teenage years I was constantly coming down with colds, flu, tonsillitis and had regular mouth ulcers. I also developed lactose intolerance in my teens to early twenties.

How has diagnosis changed your life?

As I walked home from the Doctor’s surgery, after my premature diagnosis, I thought my life was over.  Tears were streaming down my face, the thought of going without for the rest of my life crushed me.

As time went by, I began to experiment with alternatives and that feeling left me.  Not only that, in almost 2 years I have had just one cold and it didn’t leave me bedridden!

I don’t have the privilege of spontaneity about eating out anymore, but armed with knowledge and a few “back-up” places to eat (Pizza Hut anyone?!), things are easier than they could be.

What’s been the worst experience of having your condition?

The worst thing would have to be feeling so bad all the time and not knowing why.  Life after diagnosis will never be as bad as the months leading up to it.  Clinging to the toilet in agony after every meal.  Sleeping and sleeping and never feeling rested.  My periods stopped for a year and I was terrified I was going infertile, or pregnant with a small slow-growing baby.  Looking at my swollen tummy sometimes,  I did wonder..

What’s the best advice you’ve been given?

Don’t ever feel ashamed or embarrassed in doing the best for your health.  I struggle to follow this advice, especially when I don’t want to make a fuss, but I’m getting there!

What do you think needs to happen to make being Coeliac / gluten free more acceptable?

I think GPs need to read the NICE guidelines – properly – and automatically test anyone complaining of gastro-intestinal problems for coeliac disease.  Also screen those complaining of fatigue and depression.  Once we have a higher rate of diagnosis everyone will know a coeliac (HINT: they already do, but they’ll KNOW that they know one!).

Once 1% of the population has been diagnosed the market will shift to accommodate them.  It’s going in the right direction though.

How has the range of gluten free products changed since you first started using them? 

In a year and a half, I am amazed at how much has been developed.  It’s very encouraging for the future.  Now we have pizzas at mainstream chain restaurants, different TYPES of bread: pain au chocolat, bloomers, bagels and mainstream products now labeled as “gluten free”.

Name 3 of your favourite gluten free products

Isabel’s Pizza Base Mix

Mrs Crimble’s Macaroons

Mesa Sunrise cereal

However, generally I cook things that are naturally gluten-free and save money by avoiding “Free From” products.  Couldn’t live without the pizza mix though!

Best place you’ve eaten a gluten free meal out?

The RAC club at a wedding.  Their beef was spectacular. I had almost the exact same meal as everyone else, only without the Yorkshire pudding!  They brought me my own bread, my own gravy and generally treated me like a princess!  I never had to ask about the food or explain my dietary needs – everything was taken care of.

But on a budget, Bruschetta in Kingston is wonderful!

What’s the most bizarre/ funniest/strangest thing anyone’s said to you about being Coeliac? 

I’ve been quite lucky in that my friends and family have been very good at understanding my dietary needs.  However, it baffles me how many people don’t know what’s in their food.  They think we can’t eat rice and potatoes.  They think we can’t have monosodiumGLUTamate (“but it sounds the same!”).  They are horrified when I tell them there is wheat in their sausages.

What would you like to have a gluten free rant about? 

(a) Supermarkets randomly discontinuing our favourite products!

(b) Doctors patronising and belittling our symptoms

(c) Ignorant people who think it’s funny to make comments about how gluten free food “isn’t real food” or refuse a perfectly good cake because they think gluten free is a weird cult.

I could go on…?!

Thanks to Sam for sharing the difficult experience of her near diagnosis.  I agree that doctors need to be more open to the possibility of coeliac disease when patients present with IBS – like symptoms so let’s all shout loudly & encourage that to happen!

On another sharing note, Sam is fundraising to create a gluten free eBook of Christmas recipes so everyone can eat yummy seasonal food and no one will be able to tell the difference.  Well done her I say, look forward to seeing it & even trying some recipes out!

 

 

 

 

 

 

 

 

 

Gluten alternatives, Puffed Rice, Polenta, Eggs

Should school age children being tested for Coeliac disease?

Do we have a diagnosis wasteland?

This week’s Gluten Free and Gorgeous 5 minutes is with Caz of Gluten Free Foodie. Read on and find out about her gluten free challenge & her views on testing school age children for coeliac disease.

The aim of the GF&G 5 minutes with… series is to share our knowledge of living life without gluten so we learn something along the way to enhance our lives just that little bit more.  So take 5 minutes out and let’s hear what Caz has got to say..

 

Coeliac Caz Roberts  225x300 Should school age children being tested for Coeliac disease?
Gluten Free Foodie Caz Roberts – picture submitted

 

1. Are you coeliac or gluten/wheat intolerant?

I’m coeliac.

2. When were you diagnosed?

When I was 14 my Father was diagnosed with coeliac. I’d had the same symptoms for the past couple of years and had been visiting the doctor every couple of weeks but with no diagnosis for my multitude of symptoms.

I stopped eating gluten and felt better instantly.  I wanted to get officially diagnosed but it took me a while to get the appointment.  By the time I went I hadn’t eaten gluten for around 6 months.  I had no idea you had to be eating gluten for the blood test to work.  They put me on a “Gluten Challenge”.  I lasted one day before being so violently ill that I couldn’t move.

It’s a real shame about this diagnosis wasteland. My Uncle and my Niece have also been diagnosed, so it’s clear that it runs in the family!  I also have hypotyroidism (under active thyroid) which is directly connected with coeliacs.

3. How long have you been suffering for?

About 2 – 3 years before diagnosis.

4. How has diagnosis changed your life?

It’s made me into a great foodie.  Before I would eat very lazy options; a turkey sandwich for lunch and pasta for dinner.  Not eating gluten made me seek out different foods and really expand my horizons and experiment.  It didn’t take long before I became a full blown foodie.  Nowadays, if it’s gluten free, I’ll eat it.

5. What’s been the worst experience of having your condition?

I found university hard – late nights when loads of pizza or Chinese would be ordered and I couldn’t have anything and was starving!  Also, any occasion when you’re very hungry and surrounded by glutenous products, and when in a restaurant you have been assured something is gluten free…. and then it isn’t.

6. What’s the best advice you’ve been given?

Be confident, you know best.  If you think that something isn’t safe, don’t eat it.  Ask, ask and ask again if you need to.

7. What do you think needs to happen to make being coeliac/ gluten free more acceptable?

I would love to see routine testing of all school age children for coeliacs as they do in Italy.  Even if your child doesn’t have the disease, it raises awareness of society as a whole.  It would also prevent people living life undiagnosed and with chronic health problems.

8. How has the range of gluten free products changed since you first started using them?

They are vastly improved, in the late 90s there were very few gluten free products and the ones that were available were disgusting.  If I could find gluten free cereal I was lucky and it would generally be horrid, thick corn flakes.  Bread was inedible.  And a ready made gluten free pizza?  Forget about it!  We are really very lucky nowadays – the range and quality of the products available is fantastic.

9. Name 3 of your favourite gluten free products.

I love Fria gluten free bread, Dietary Specials (DS) frozen pizzas and Estrella Daura gluten free beer.

10.  Best place you’ve eaten a gluten free meal out?

I adore The Orrery, Marylebone, London.  Amazing fine dining French cuisine and all attentively amended to your gluten free needs without a fuss!  On the more day to day cheaper scale – I’m having a small love affair with Wahaca at the moment.

11. What’s the most bizarre/ funniest/ strangest thing anyone’s said to you about being coeliac?

“You can’t have butter then” Or when a waitress told me I  couldn’t have the potatoes and gave me pasta instead!

12. What would you like to have a GF rant about?

Definitely about testing the whole population at a young age.  Then no one would have to have to do a horrible “Gluten Challenge”!

 

 

 

 

polenta, Puffed Rice, Egg, Flour, Quinona

A GF&G 5 minutes with Charlote Pike of Go Free Foods

What happens when your partner is diagnosed  with a gluten and dairy intolerance?

I’m excited & slightly amazed that the very busy Charlotte Pike, co-founder of Go Free Foods (with her partner, Tony) has found 5 minutes to take part in my regular “Gluten Free & Gorgeous 5 minutes with…” feature.  Charlotte’s busy working on a cookery book at the moment as well as running Go Free Foods and baking Free From Award winning chocolate brownies!

So grab a coffee and take 5 minutes out with Charlotte ..

Go Free Charlotte Tony 300x254 A GF&G 5 minutes with Charlote Pike of Go Free Foods
Charlotte Pike with partner Tony of Go Free Foods (picture submitted)

 

My partner Tony is gluten and dairy intolerant

2. When was he diagnosed?

In 2004 – seems like a long time ago now!

3. How long had he been suffering for?

The intolerance developed from catching a water-born infection whilst rowing, led to ME and then multiple food intolerances.

4. How has diagnosis changed your life?

It has and it hasn’t.  The only real changes have been in terms of diet, and from feeling generally unwell to on much better form.  The practical changes have changed the foods we enjoy together.

5. What’s been the worst experience of having his condition?

Having to put up with poor quality free from substitute foods.

6. What’s the best advice you’ve been given?

Cooking everything from scratch has made a massive difference.

7. What do you think needs to happen to make being Coeliac / gluten free more acceptable?

Awareness.  We have visited many restaurants where we have booked ahead, informing them of dietary requirements and they have been clueless when we’ve arrived!

8. How has the range of gluten free products changed since you first started using them?

So much!  The taste, range and quality of the products available have improved dramatically.  They were so bad at first, we decided to make our own and now sell them nationwide!

9. Name 3 of your favourite gluten free products

Well, a shameless plug … Go Free Foods top 3 products:- our pancake mix, sponge mix and award winning chocolate brownies.  Other products are Tesco freefrom fish fingers, Doves Farm free from flour blends and pastas.

10. Best place you’ve eaten a gluten free meal out?

Gidleigh Park.

11.  What’s the most bizarre/funniest/strangest thing anyone’s said to Tony about having food intolerances?

In a restaurant, “we’ll just go and get some gluten bread for you”, when we’ve just said we need a gluten free meal!

12. What would you like to have a gluten free rant about?

The amount of rubbish that appears in so many gluten free products.  You can make nutritious, delicious free from food without nasty additives and cheap fillers.

Quite agree Charlotte! Am often amazed by the amount of sugar in gluten free products.  What surprises have you found in gluten free products?

 

 

 

 

 

 

 

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A GF&G 5 Minutes with …. Dawn of The Moiderer

We only send her to Birthday parties if I can make the cake!

Continuing the GF&G 5 minutes with … series, this week Dawn from The Moiderer reveals what it’s like to have a child who’s wheat intolerant.

 

IMG 1687 300x200 A GF&G 5 Minutes with .... Dawn of The Moiderer
Dawn The Moiderer with her wheat intolerant daughter (picture submitted)

 

1. Is your child Coeliac or gluten / wheat intolerant?

My daughter, now aged 4 is wheat intolerant

2. When was she diagnosed?

Self diagnosis at 2.

3. How long had she been suffering for?

A couple of months. 

4. How has diagnosis changed your life?

It’s changed everything in that we rarely eat out.  We also only send her to birthday parties if I can make the cake!  However, we also do more baking together.  It’s annoying that there are very few options for quick meals and with a child – who are fussy things are the best of times – it’s really hard to do a quick balanced meal for her. 

5. What’s been the worst experience of having her condition?

Teaching her that she can’t share others’ foods and worrying when she goes out if we’re not there.

6. What’s the best advice you’ve been given?

Buy a sack of gluten free flour!

7. What do you think needs to happen to make being Coeliac / gluten free more acceptable?

I don’t think it’s unacceptable – it’s just that people don’t understand what gluten is in and how many things have wheat flour in them.  Would also be good to see some of the prescription products available in the shops – like the Glutafin mixes. 

8. How has the range of gluten free products changed since you first started using them?

It’s only been a couple of years so not a lot.  Although there are a lot more products in the shops and more restaurants have GF menus or sections on their menu.

9. Name 3 of your favourite gluten free products.

Homemade flatbread pizza,  M&S sausages, Wharburtons GF bread. 

10. Best place you’ve eaten a gluten free meal out?

The Beefeaters tend to have good menus.  I love that M&S have gluten free options in their cafe if they haven’t run out! 

11. What’s the most bizarre/funniest/strangest thing anyone’s said to you about being wheat intolerant?

Oh god, I can’t remember but I know there have been a couple of things!

12. What would you like to have a gluten free rant about?

Sweets and Chocolate – why do they need wheat in?  And beans!  Heniz are OK but some of the products that have wheat in defy all logic… it’s like someone adds it for a laugh!  

Thanks so much to Dawn for sharing her experiences of parenting a child with wheat intolerances. I’m with her on the rant – anyone know why some Chocolate or baked beans have wheat in them?! I’m assuming it’s used as a bulking agent but is there another reason?

Polenta, puffed rice, eggs

A Gluten free and Gorgeous 5 minutes with Coeliac Mummy365

Living life without gluten

It can be challenging especially you’re starting out on a gluten free lifestyle.  I’ve learnt a lot from other people’s experiences & believe sharing that information can only make for an easier, tastier gluten free life.

So this is the start of a regular Gluten Free and Gorgeous question and answer session.  Today’s hot seat is taken up by the lovely Karin Joyce of Mummy365 & Cafe Bebe, so if you’re sitting comfortably then we’ll begin…

 

IMG 20120510 02921 300x225 A Gluten free and Gorgeous 5 minutes with Coeliac Mummy365
Coeliac Karin Joyce of Mummy 365

1. Are you Coeliac or gluten/wheat intolerant?

I’m Coeliac

2. When were you diagnosed?

December 2010 after blood tests and a gastroscopy

3. How long had you been suffering for prior to diagnosis?

About 2 years.

4. How has diagnosis changed your life?

I feel so much better, am much more cautious about what I eat and have been cooking and baking more.  On the downside, it’s frustrating finding gluten free products while out and about and also having to pay 2-3 times more than non gluten free products. 

5. What’s been the worst experience of having your condition?

I got “glutened” because I didn’t want to be difficult.  I scraped scrambled eggs off a granary roll and ended up being horribly ill afterwards.  I learned that I NEED to be “difficult” and ask for food the way I need it or I will be poorly. 

Also, on holiday in a seaside town, finding lunch one day was nearly impossible.  Everything easy to “take away” was stuff like fish and chips or sandwiches.  It took me over an hour to find something edible while everyone else in the family was done with their lunch.  

6. What’s the best advice you’ve been given?

Initially I registered with Coeliac UK, Glutafin and Juvela which was extremely helpful.  You receive a  Food & Drink guide with Coeliac UK which helps you to learn what you can and can’t eat/buy.  Glutafin  and Juvela both have starter kits that allow you to sample some of their prescription offerings.  You also have access online to all of their recipes and recommendations which really helps in the beginning. 

7. What do you think needs to happen to make being Coeliac / Gluten Free more acceptable?

Greater awareness of what Coeliac Disease is will help.  There are still a lot of people who have no clue about Coeliac Disease and just assume you’re being awkward when you question their food practises.  There are supposedly 1 in every 50 Britons who live with Coeliac Disease so it’s far more common than people think.  Also, the average diet contains far too much gluten so everyone would be better off by decreasing or limiting their gluten intake.  Lower prices on GF options would make it much easier to do this. 

8. How has the range of gluten free products changed since you first started using them?

The range of gluten free products has grown dramatically in the 18 months since my diagnosis.  Genius has really cornered the gluten free market and is coming out with new products regularly.  Warburtons has even dipped into the market by making gluten free breads which are made in a truly GF factory which is a major commitment.  You can substitute virtually everything in a gluten free diet … you just have to know where to look for it!

9. Name 3 of your favourite gluten free products

Genius seeded bread,  DS Short-cut pastry (frozen), Amy’s Kitchen Mac n Cheese.

10. Best place you’ve eaten a gluten free meal?

It’s a toss up between Carluccio’s and Leon (both in London).

11. Most bizarre/funniest thing anyone’s said you about being Colieac?

I regularly get people staring at me blankly, like “What the hell is gluten?” .  I was also told by a hospital breakfast server, that I could have Rice Krispies (when I know it’s not truly GF) and Minestrone soup (which contains pasta).  Erm, no I can’t.  

12. What would you like to have a gluten free rant about?

I would love to rant about the cost of gluten free food.  It’s a ridiculously higher cost for a GF option and I know that’s mainly down to supply and demand.  However, if one in every 50 Britons has Coeliac Disease and the GF shelves in my local Tesco are regularly empty of certain things, there’s obviously a higher demand than we think.  I have to decide whether I want to “treat” myself to 4 crumpets for £2 when the rest of the general public can enjoy 6-8 crumpets for between 50p and £1!  Ridiculous! 

A big thank you to Karin for sharing her experiences and especially for her rant, I couldn’t have said it better myself!

What would your gluten free be about?