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IMG_0375I have now been diagnosed as a Coeliac for 10 years so I thought is would be interesting to muse a little about what the experience has been like for me over this period.

I now wish I had been writing this blog when I was first diagnosed and could go back to read how it felt at the time. My memories of it was that it was a shock to be diagnosed and I wasn’t at all sure how I could manage with such a restricted diet. I did not have any family or friends who had the condition and I was a single, working mum with 2 teenage children so it was all a bit disorientating to start with.

I vividly remember the first time I went shopping – it took me about an hour and a half to do my normal shop as I was having to read the ingredients list on everything that I normally bought. It wasn’t helped by my struggling to read the ridiculously small print that the information was printed in. (This led to my having my eyes tested and to going straight into varifocal glasses from having perfect vision – but that is another story). I remember being very depressed and upset and getting really frustrated.

I was advised to join Coeliac Uk which I did. I found their web site extremely helpful, and their book of gluten free products a god send. I used it all of the time when I first got it, although I found I settled into a range of products that I knew were safe quite quickly. I religiously updated the book every month with the information they sent to me. After about 5 years I stopped doing this as I was more confident about what I was buying – and the marking of allergens on products had started to improve by then.  I still use the book, but very rarely. I am really pleased that they have now released an app that I can use on my I-phone which means I am using it more often again now. I also like to use their list of venues that cater for Coeliacs – and have sent in recommendations for places I have found too.

I found my visit to the dietician frustrating. As a librarian I had done a lot of research into the condition and I had already found out about virtually everything they told me. The questions I did had have they couldn’t answer. They sent me a letter afterwards saying I had agreed to be signed off from them – not what I remembered about the appointment, but it suited me as it hadn’t really helped.

The added complication of my condition was that I was found to have osteopaenia. This is the stage before  osteoporosis – the thinning of the bones due to a lack of calcium in the diet caused by my body not absorbing all of the nutrition I was eating due to the villi in my stomach being stunted. I was also chronically anaemic. The latter was sorted out through eating a gluten free diet  and so absorbing enough iron – along with me putting on 2 stone without increasing the volume of what I was eating. I have been on calcium tablets for the last 10 years for the osteopaenia – prescribed for 8 years and then Forever Calcium for the last 2 as my 2nd Dexa scan (bone density scan) showed no improvement after 8 years. I have written more about this in a separate post.

I did go along  to a local Coeliac UK meeting for the recently diagnosed, however I found it a very depressing experience as most of the other people were focussing on all of the things they could no longer have. I found it a little like how I think an Alcoholics Anonymous meeting would be as everyone was identifying themselves by the date they were diagnosed. I had passed the grief  stage by this time, and was in some ways grateful that if I had a condition it was one that could be managed with diet, rather than something like Crohn’s which my brother has had since he was 16. I have since developed Microscopic Colitis due to a very stressful job and dislike having to take steroids which is the only way to clear it up. It took me 10 years to attend another meeting – and this one was very different. We had an excellent talk about providing support for teenagers who were diagnosed, and some excellent cakes from the Slice of Heaven bakery which were delicious.

I am now reasonably settled into my life as a Coeliac. I still find it frustrating when I am having trouble finding something to eat when I am out, but I am rubbish at planning ahead so some of it is my own fault. I find the reaction that I have to eating gluten difficult – sickness, diarrhoea, light headedness, bloating, gasiness and fatigue. I didn’t have a noticeable reaction after eating gluten before I was diagnosed – but my body really doesn’t like gluten now. I am lucky in that it only takes me a few days to a week to get over a glutening episode physically when I know some people who take a lot longer. Mentally, however, it can take me a number of weeks to be confident about eating out or having something made by someone I don’t really know.

I must say that the range of foods available to me are now greatly increased from what was available in 2004. The knowledge of catering establishments is improving, with a lot more of them providing gluten free menu’s, marking their menu’s or having diet sheets (although the print on them can be difficult to read and some restaurants don’t keep their folders up to date).

I am happy to talk to anyone who is recently diagnosed, or who has family or friend who have been told they have the condition. Get in touch, or comment on this post about your experiences if you feel it would help others, or you just want to let it all out.

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My sister and me - feeling great using our Forever Living products

My sister and me – feeling great using our Forever Living products

This post is in response to the regular questions I have had from colleagues and friends about whether Forever Living caters for the gluten free diet, and which products are suitable. I will include lists at the end of the post which were on the UK Forever Knowledge site in November 2013.  A Forever Living independent distributor, like me, can access the list from the UK website – I am not sure if similar lists are available in the other 154 countries where you can currently purchase Forever Living products. If they are, please add a comment to this post to let us all know.

A little bit about me

I was diagnosed with Coeliac disease in 2004 after developing a bad back which meant I could hardly walk, and with shooting pains that went all the way down one leg in December 2013.  The tests done on me to find out what caused the problem found that I was chronically anaemic as well and at one point, very briefly leukaemia was mentioned. Luckily for me it was identified that I had a trapped nerve and was a coeliac.  I am the third person in my immediate family to develop an auto immune disease as one of my brother’s has Crohn’s disease and my sister has Rheumatoid Arthritis. I had never had the classic symptom of being under weight, just the anaemia and regularly diarrhoea which always happened when I was stressed as well as being prone to stomach bugs. I had had gastroenteritis in 2000 and my specialist thinks this is what triggered the Coeliac disease to start.  I also had a Dexa scan to check my bone density, as I was in my late 40’s and it was found that I had osteopaenia, and I started the menopause early.

I rapidly put on 1 stone then another after going on the gluten free diet. I have always been reasonably careful with my diet and do not knowingly eat gluten as if this is what I need to be healthy and have a long life then I will stick to the diet. I also knew that even if I was not losing weight when eating gluten it was having a detrimental effect on my health in ways that I couldn’t see straight away. I found out the first time I had gluten by accident that I now reacted very strongly with  diarrhoea and vomiting, and also losing the ability to string sentences together (although some say that is normally for me).

Food and Forever Living

I did not like the fact that I had put on a lot of weight, but I found the thought of calorie or points counting too much while also having to check everything for gluten. What I liked about Forever Living when I first found out about the company is that they have very clear information about which of their products I can use which makes choosing and using them really easy. I am heating a healthy balanced diet (now I have started running my own business) but still feel the need to take additional supplements to make certain that my body is getting all of the nutrition it needs.

I particularly like the fact that most of the Forever products start with a large amount of organic, good quality aloe vera and then add other natural products to it.  I did some research into studies that have found that aloe vera has the potential to help people with other Irritable Bowel Disease live with the condition better. I have since developed another IBD – Microscopic Colitis – due to the stressful job I used to do, and I have found that drinking aloe vera has helped me to feel better, and the condition of my skin, nails and hair has also improved.

So, if you are a coeliac, or intolerant to wheat gluten have a look at the list below and see if there are products there that tempt you. Forever has a 60 day money back guarantee when you buy from an approved distributor so you can try the products at no financial risk to yourself.

This is a list of the products that are shown as gluten free in the United Kingdom as of November 2013 is:

Aloe Berry Nectar
Aloe Blossom Herbal Tea
Aloe Vera Gel
Forever A-Beta-CarE
Forever Active HA
Forever Active Probiotic
Forever Aloe Bits N’ Peaches
Forever Aloe2Go
Forever Arctic-Sea
Forever B-12 Plus
Forever Bee Honey
Forever Bee Pollen
Forever Bee Propolis
Forever Calcium
Forever Echinacea Supreme
Forever Fast Break
Forever Fast Break Ultra
Forever Freedom
Forever Freedom2Go
Forever Garcinia Plus
Forever Garlic-Thyme
Forever Ginkgo Plus
Forever Kids
Forever Lean
Forever Lite Ultra-Chocolate
Forever Lite Ultra-Vanilla
Forever Lite-Chocolate
Forever Lite-Vanilla
Forever Lycium Plus
Forever Multi-Maca
Forever Nature’s 18
Forever Nature-Min
Forever Pomesteen Power
Forever Royal Jelly
Forever Vision

The following cosmetic products are also certified as gluten free – taken from the site in November 2013:

25TH Edition Cologne Spray for Men
25TH Edition Perfume Spray for Women
Aloe Activator
Aloe Bath Gelee
Aloe Body Conditioning Creme
Aloe Body Toner
Aloe Cleanser
Aloe Ever-Shield
Aloe First
Aloe Heat Lotion
Aloe Jojoba Shampoo
Aloe Lips with Jojoba
Aloe Liquid Soap
Aloe Lotion
Aloe Moisturizing Lotion
Aloe MSM Gel
Aloe Propolis Creme
Aloe Sunless Tanning Lotion
Aloe Sunscreen
Aloe Sunscreen Spray
Aloe Vera Gelly
Aloe Veterinary Formula
Avocado Face & Body Soap
Firming Day Lotion

This post has been written by my daughter about he experience with the medical systems in England and Ukraine. I have to say that Ukraine wins hands down- 10 days to get a diagnosis of ulcerative colitis after the National Health System in England had taken 8 months to get nowhere.
The moral of the story is to listen to your body and keep going to the doctors until you get a resolution to a medical issue.
I am extremely proud of her as she has kept working throughout this experience, including changing jobs and moving to a new country. She would not have coped so well in Ukraine without an absolutely fantastic new boss who, with her husband, have given her a lot of support – especially as Sandra has not learnt enough Russian yet to navigate the medical system.
What makes this worse is that our family have a history of auto immune gut problems – I am a coeliac and also have microscopic colitis, one of my brother’s has Crohn’s. My sister has another auto immune disease – rheumatoid arthritis. In light of this the lack of a referal to a gastroenterologist in England is amazing to me. At least in Ukraine you can to straight to the specialist without having to go through a general doctor.
I hope that her experiences help you to have a better result from the NHS even if you have to be persistent.

Sandy Millin

This post is going to pretty personal, won’t mince words, and doesn’t really have anything to do with teaching, but I wanted to share it to get it out of my system. Feel free to skip it, or to scroll down to ‘The moral of the story’.

(Bear with me – there is a point to this, and a reason I’m telling you in such detail…)

What happened?

In December 2012 I was off work for a month with diarrhoea, which I believed was brought on by exhaustion (a lack of holidays during the year – my own fault because I filled it with London 2012 and Delta) and stress (Delta again). I went to the doctor a few times and they gave me various tests, including a blood test for coeliac, which my mum has, and another for iron – low iron is also a family problem. The coeliac…

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Yesterday (30th March 2012) was a more interesting day than usual for me in my experience as a Coeliac who regularly eats out, but who is really poor at planning or checking ahead about what could be available. This often leads to poor experiences, but today I had the best motorway service station experience I have ever had since being diagnosed courtesy of Starbucks at the southbound Warwick services on the M40. As usual I arrived at lunchtime taking pot luck. Much to my surprise my hopefulness was finally rewarded with the choice of not 1 but 2 savoury gluten free items for lunch. One was a ham salad sandwich, and the second a lovely salad. I celebrated with one out of the choice of 2 gluten free cakes. My only sorrow in this is that I am not hopeful of repeating the experience every time I visit a Starbucks, but at least I can enjoy it this time.

Unfortunately my second experience at the Holiday Inn at Brentford Lock was not so good. When I asked the waiter what was gluten free on the menu as I am a Coeliac he looked confused and asked me for my room number. I gave it to him and he went off to the bar- I should have asked him why as I had not said I was coeliac when booking the room. He came back saying there was no company of that name registered to the room! My explanation had obviously not worked. I had omitted to transfer my normal fall back – an information card- to my new handbag so found the electronic one I have as an app on my I-phone. His face cleared and he took my phone to show the chef. Imagine my surprise then when my order came – a similar kebab to the one I had really ordered but which included sausages. As the experienced coeliacs among you know sausages are not usually okay for us. I have to admit to giving up at this point as I was hungry and tired so I just took the meat off the skewer and left the sausages – risky I know but I couldn’t face having another discussion with the waiter and didn’t think of asking for the duty manager. The waiter did come and ask if everything was okay and I said ‘no I have been given sausages I cannot eat’ and he smiled and walked away.

31st March 2012 update

I have tweeted my unhappiness at my treatment yesterday and been recommended to talk to the duty manager by a representative of the company, which I am about to do, but wanted to write this first.

Tonight I had a much better experience eating in the Holiday Inn at Brentford Lock following my discussion with the duty manager who checked and ordered my meal himself ( using the same I-pad information card I used last night). I hope my experience means that coeliacs using this hotel in the future get a better response than I did.

I find complaining about issues relating to my Coeliac condition quite difficult which is strange when you consider the extremes discomfort that a mistake will cause me. I found it easier to relate it through facebook, twitter and this blog. Maybe it is just too personal? I have made a promise to myself to be more proactive and this weekend is the start of that – it will be interesting to see if I keep it up. It is far better for me to follow up my writing about the issues by talking to the people concerned to help them to understand, or even talk to the, straight away if I can get myself to do so.

And I have eaten out a lot this week – each time I have had a good experience, which is not always the case for the coeliac.

My first good experience was at Woktastic  in Birmingham. I have been there for their lovely Sushi before and asked about gluten-free soy sauce. This time when I went they had got some in (following my previous request). The first good experience.

Then on Thursday I was in London and went to one of the Bella Italia‘s in Leicester Square  as I had been told they have a gluten-free menu, and you don’t have to pre-book your meal. It’s true and the food was good too with a separate menu with plenty of choice.

Then onto Newcastle to visit my daughter, first of all a lovely meal at a local Indian restaurant – Shahira  where they were very helpful and the meal was tasty too.

The next day we had food from another continent with tapas at El Coto  recommended by a Coeliac friend of my daughter. She was right it is excellent, with  a wide range of gluten-free dishes. I only wish there were more restaurants nearer to me in Wolverhampton. As it is those of you in Durham and Newcastle are lucky.

Finally today tapas again – this time La Tasca by the millennium bridge in Newcastle. This is a company I have used before who have clearly marked menu’s.

So I have had a good trip around the world’s cuisines, with all of the experiences excellent. I only wish it was always like this – maybe it will be, I can live in hope…………

I have decided to have a go at writing my own blog having started reading ones that other people have been writing. I also often have conversations with myself about issues and just general thoughts, so ‘why not share this with others and see if they want to join in’ I thought – so here are my musings.

Coeliac and librarian are the two words that I use the most when identifying what I am. I have to use coeliac every time I eat if I am not at home – this was not a choice but is a medical condition. Librarian because this was my first profession and I still use it to describe myself if I am asked what I do even though I haven’t managed a library directly for many years. I am still responsible for a library service though.

I also wanted to try to post some positive thoughts about libraries as there is so much negative information about them around at the moment. This does not mean that I want to denigrate the postings of those people fighting for libraries, but just that I feel the positive things libraries, and librarians do, is lost in all of this. I have been particularly inspired having just visited the wonderful Newcastle Library for the first time.

The building is lovely, and the art work inspiring – a really good mix and a lovely advert for libraries still having a place.

I will also be writing about my experiences as a coeliac – which may not be as positive as the library posts – as this is a real identifier for me as it has an impact on any experience that includes food I am not preparing for myself. It is quite surprising how differently I react to the experiences I have as a result depending on my mood, health or stress levels.

So there it is – I hope some people find it interesting, but if not I can look back at my conversations with myself, which I can’t do when they are in my head ;0)

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