Living With Coeliac Disease

27 Jan

I have been asked a few times recently about my tips for those newly diagnosed with Coeliac Disease, and advice for those struggling to get to grips with the disease.  So I thought I would put together a post with some advice for those struggling, based on my experiences over the past year and a half.  Please bear in mind that I am not a medical professional and this is based purely on my personal experience.  Always seek advice from your GP or Dietitian before making any major changes to your diet.

Kev_Abby

The photo above is of myself and my wife Abby in Lyme Regis is Easter 2011.  This was one of the few moments of our trip away that I didn’t spend in a public bathroom.  Little did I know these bathroom trips were to be the start of my coeliac journey.  As I’m sure most of you that are reading this will know, this means a lifetime without gluten, therefore a lifetime without wheat, rye and barley.

So you’ve just been diagnosed with coeliac disease.  You are probably feeling like the world has just ended.  So what to do next?  Well the first thing to know is that life isn’t over.  Gluten free life can be a challenge, but there are lots of gluten free options out there and plenty of people willing to help.  First stop for anyone newly diagnosed should be the Coeliac UK website, where you will find a wealth of helpful information.  Membership for the first six months is free, and it is worth joining for the annual Food and Drink Directory which lists thousands of safe to eat foods.  They will also put you in contact with your local coeliac support group.  It is also worth getting a book to read more about the disease.  I can recommend “Coeliac Disease: What You Need to Know” by Alex Gazzola.

It is also a good idea to register with some of the gluten free food manufacturers, as this can lead to lots of gluten free freebies.  After I was diagnosed I registered and received free samples from Juvela, Glutafin, Dietary Specials and Livwell.  Ask your GP if you are entitled to gluten free food on prescription, and hopefully your free samples will help you choose what to have if so.  I am lucky enough to get Juvela foods on prescription, but many regions have recently made cuts in this area.

Unfortunately accidental glutenings will be part of the learning process, and coeliac life going forward.  It’s a good idea to stock up with peppermint tea as this can help calm your stomach when you have accidentally ingested the evil stuff.  The psychological impact of being diagnosed is one of the biggest things to deal with, and is not something that the NHS will offer any help with.  The best way to deal with this is to become part of the gluten free community.  Sharing experiences with other coeliacs, and having people who understand what you are going through is a massive help.  I have written about how to become part of the GF community for the Foods You Can website here.

Those of you who have read the story of my first year as a coeliac will know I’ve seen major heath improvements, but coeliac disease is different for us all and it can take as long as two years for the gut to recover in some cases.  It’s my belief that I’ve had a relatively smooth recovery due to a fairly swift diagnosis.  I’ve read many stories since from people who have been suffering for over ten years before being diagnosed, and this level of damage can have much longer recovery times.

So you’ve gone gluten free, but you’re not feeling better.  What to do now?  Hopefully by now you will have been referred to a dietitian, and will have been advised to cut out oats (even gluten free versions) for the first year.  A small number of coeliacs react to oats and it is best to be back to full health before slowly reintroducing to see if oats are a problem.  From talking to other coeliacs it is clear that after-care and advice from the NHS varies dramatically and I have spoken to several people who have not had this advice.

Many coeliacs suffer from lactose intolerance when first diagnosed, which can be a side affect to gut damage.  Fortunately this was never an issue for me, but I have spoken to many coeliacs who have been affected.  In most cases this should be temporary and you hopefully you will be able to tolerate lactose once your gut has healed.  There is further information on the Coeliac UK website.  Consult your GP or dietitian if you feel lactose may be an issue for you.

Personally I have cut out anything carrying a “may contain wheat/gluten” or anything “made in a factory handling wheat/gluten”.  I’ve had some bad experiences with these products and now avoid completely rather than risk it.  Cross contamination is one of the hardest aspects to deal with.  If you are living with others that are eating gluten then having your own utensils is a good idea, your own separate toaster, chopping board and pasta drainer etc.  I’ve recently thrown out all my wooden spoons and replaced with silicon versions.  Always clean down surfaces before preparing food, one crumb is enough to make you sick.  My wife now eats gluten free as much as possible at home, and keeps all her gluten containing food in a cupboard in another room.  I am very grateful to her for this.  If you are outnumbered by the gluten eaters then a lot of coeliacs have their own cupboard for their GF food.

Eating out is another big challenge.  I try not to eat anywhere that I haven’t thoroughly researched first.  Use the internet to search for recommendations and social media to ask for suggestions.  There are websites such as Live Gluten Free that have searchable databases of gluten free friendly restaurants.  See also my guest post for the Give Me Gluten Free website for more eating out advice.

Also pay close attention to what you are drinking.  The last two times I’ve been glutened have been from drinks.  Firstly I was drinking Tetley Green Tea which I later discovered carried a “may contain gluten” warning, and then I drank cider in a pub and got ill so I assume the glass or pumps had previously been used for beer and not cleaned properly.  Many squashes contain barley and it’s an area that’s often easy to overlook.  Beer is obviously a no go, though there are some gluten free beers on the market.

I am taking several supplements to help me get back to health.  I have always taken a multi vitamin with added iron, due to leading a previously largely vegetarian diet at home (my wife is vegetarian) and I believe this helped me from becoming anaemic when I was going through diagnosis.  I have since started taking a prescription calcium supplement (AdCal) after a bone density scan showed osteopenia.  I also take an Omega 3 supplement as I don’t eat fish.  Please consult your dietitian with regards supplements.  I have also started taking a good quality probiotic (Culturelle) with the aim of improving the health of my gut.  Since being diagnosed with coeliac disease I have also developed issues with acid reflux, and have been prescribed Omeprazole to combat this.  The acid reflux has also led to me having to give up black tea, and I now drink green or peppermint tea instead.

So have you struggled to get back to health despite going gluten free?  Do you have any tips for the newly diagnosed or those struggling to feel better?  Please use the comment section below to share your experiences and tips with the gluten free community.

Kevin, Gluten Free by the Sea

9 Responses to “Living With Coeliac Disease”

  1. Martin Duncan January 27, 2013 at 9:13 pm #

    I was diagnosed as Coeliac 13 months ago – and ever since, I’ve tried to be absolutely strict. I never had any of the usual symptoms (they tell me I was born with it – I am now 64!). It was just discovered through blood tests over the last two years when they noticed my levels of vitamin B12 were very low. I have a job that takes me round the world – and that is very hard. Currently in Switzerland – reading labels is very tricky (ingredients not translated into English). Was in America at Christmas and they are generally savvy (though must have eaten something contaminated on New Year’s Eve, though they swore the dish was gluten-free). Eating at home, no problem. Eating out? – and you can’t help feeling you’re being “difficult”.

    • Kevin Gollop January 27, 2013 at 9:17 pm #

      Thanks for the comment Martin. I am the same, I always feel like I’m being difficult too. I am finding an increasing number of restaurants that do their best to make you feel like it’s not a problem for them. I don’t envy you having to read all those foreign labels though!

      • artisticleader January 27, 2013 at 9:20 pm #

        Surprisingly, Italy last year wasn’t bad for supermarket shopping – the one I went to had a ‘Senza glutine’ section incl. pasta! I didn’t try to eat out, though I am sure fish & veg would have been fine.

  2. Alex Gazzola January 27, 2013 at 9:34 pm #

    Thanks for the shout, Kevin! So glad you’ve found the book helpful.

    Italy is excellent for coeliacs, Artistic Leader – the supermarkets are well quipped – and even stores at service stations have GF dried pasta and biscuits. Sian D (Gluten Free Mrs D blog) is well worth a read – she often visits.

  3. greenmumsblog January 27, 2013 at 9:42 pm #

    These are great tips Kevin, thank you. I’ve been diagnosed for 38 years and I still learnt something! I’m going to give those probiotics a try as I have been suffering with acid reflux lately too.

    On another note, I came across this article tonight which you may be interested in!

    http://www.dailymail.co.uk/health/article-2214762/Coeliac-disease-The-vaccine-means-coeliacs-eat-wheat.html

    • Kevin Gollop January 28, 2013 at 8:03 am #

      Thanks, glad you like it. I should clarify that the probiotics were not aimed at sorting the acid reflux, but I’ve heard numerous times that it’s a good idea for coeliacs to take a good quality probiotic, particular while healing. I am prescribed Omperazole by my doctor for the reflux though. Thanks also foe the article link. It’s an interesting subject and we live in hope, though I gather this is still some years away. I’m not sure how I’d feel about deliberately eating gluten now, but it would certainly be good to not have to worry about cross contamination.

  4. What Not To Eat January 28, 2013 at 3:32 pm #

    Thank you for this information. I am in the process of being diagnosed and am not expecting to get much help from the NHS. There are also no support groups in my area. You’ve answered some of my queries and doubts.
    Keep up the good work.

    • Kevin Gollop January 28, 2013 at 3:41 pm #

      Thank you for the kind words. Good luck with your coeliac journey, and if you’ve got any unanswered questions I’m happy to try and help.

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  1. Gluten Free by the Sea top posts - PRSD - January 9, 2014

    […] Living With Coeliac Disease: When first diagnosed with coeliac disease it can be a very daunting time. I am often asked for […]

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