Coeliac Awareness Week

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An Interview With Michelle – Raising Awareness For Coeliac Disease

First of all, what is coeliac disease?

Coeliac disease is a common digestive condition where the small intestine becomes inflamed and unable to absorb nutrients. It can cause a range of symptoms including diarrhoea, abdominal pain and bloating.

Coeliac disease is caused by an adverse reaction to gluten, a dietary protein found in three types of cereal:

  • wheat
  • barley
  • rye

Gluten is found in any food that contains the above cereals, including:

  • pasta
  • cakes
  • breakfast cereals
  • most types of bread
  • certain types of sauces
  • some types of ready meals

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Symptoms of coeliac disease

Eating foods containing gluten can trigger a range of gut-related symptoms, such as:

Read more about the symptoms of coeliac disease.

Who’s affected

Coeliac disease is a common condition that affects approximately one in every 100 people in the UK. However, some experts think this may be an underestimate because milder cases may go undiagnosed or be misdiagnosed as other digestive conditions, such as irritable bowel syndrome (IBS).

Reported cases of coeliac disease are two to three times higher in women than men. It can develop at any age, although symptoms are most likely to develop:

  • during early childhood – between eight and 12 months old, although it may take several years before a correct diagnosis is made
  • in later adulthood – between 40 and 60 years of age

The above information is taken from the NHS website. You can find it in full here.

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So..

Coeliac awareness week in United Kingdom was from 9th to the 15th May. Unfortunately I missed posting this whilst the event was on going; but I still want to raise awareness for this disease and what it is like to live with. I interviewed my good friend Michelle, who suffers with a severe case of this condition. Going out for lunch is an absolute nightmare for her, as she has to check the ingredients on absolutely EVERYTHING she picks up.

Michelle can’t have sandwiches out unless they are made on gluten free bread, which is so unlikely! If she’s lucky shops will offer a gluten free range, but the choice is extremely limited. Normally she ends up just having to grab whatever is available to her. It’s so bad to the point, where she can’t pick up a bag of crisps or a chocolate bar because it’s likely it will have wheat/gluten in it.

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A lot of people choose to be gluten/wheat free, as a lifestyle choice as the diet is healthier and it can help people lose weight.

Unfortunately like Michelle, people who are diagnosed with coeliac disease can suffer a severe reaction if they touch anything with gluten in. I have known Michelle for two years now, and I have seen how she reacts if she accidentally consumes anything with gluten in, without being aware of it. I can’t express how upsetting it is for her, and the pain it can cause her.
If you have coeliac disease, it can also be impossible to eat in restaurants unless you know that the restaurant offers gluten free food. I have noticed more and more places now, putting the gluten free symbol next to food items on a menu or on the packaging of food.

There was an occasion that I can never forget, where Michelle and I visited our local pub for lunch as we knew they had a gluten free menu. Michelle always likes to double check with the chef that the food indeed is gluten free as her reactions to it are so bad. After checking, it turned out that the chips that were included in the gluten free meal, weren’t actually gluten free! They were cooked in the oil that gluten containing items were also cooked in, which is cross contamination.

If Michelle was to have eaten them chips, the fact that they weren’t cooked separately to food containing gluten meant she would have had a reaction just as bad as if she were to eat bread for example. We were both outraged at this, as if a place which serves food offers ‘gluten free’ food, then they should take extra caution that at no point cross contamination can occur.

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I asked Michelle some questions which will hopefully answer any questions anyone else may have about the disease:

1. So Michelle, what symptoms did you notice before the diagnosis of being coeliac?

Hi Lauren! My main concern was the thinning of my hair (I always had quite thick hair) I also noticed I was feeling quite bloated after eating and some discomfort at times. I was also getting what I thought were mouth ulcers but I had no idea that was a symptom at the time.

2. Did you know a lot about coeliac disease beforehand?

No I had never heard of it before until one morning my mum said to me “watch Breakfast Television as this guy and his daughter are on talking about the same symptoms that you have!” It happened to be a man who was tired a lot, suffered with bloating, low iron and had a lot of my symptoms after eating certain food.

3. What tests did you have to go through before being diagnosed?

I was told not to eat bread, pasta or anything with wheat in for two weeks then I went back to see my Doctor and he did a blood test. The Doctor then called me to say I did have levels in my blood which indicated I had coeliac disease. I was then sent for an endoscopy to determine the extent of how bad the lining of my stomach was by how damaged my Fili was. The results came back and I was told it was about as bad as it could get and if I didn’t go on a Gluten free diet immediately and maintain it, then my symptoms could eventually result in diabetes and in some cases lead to liver cancer.

4. Can you explain to readers, what would happen if you were to come into contact with gluten?

I get extreme lumps appear under the roof of my mouth and turn into what feels like ulcers, this is so painful to eat with and takes approximately a week to go down and heal and there is nothing I can take to clear those up.

5. I know there are a lot of frustrations that come with being coeliac, but what are the biggest things that get to you the most?

The biggest frustration is the local small shops that don’t do a ‘sandwich for lunch’ or ‘on the go foods’ yes you can buy buns and chicken/ham/cheese in shops to make up your sandwich, but not a ‘gluten free pasta’ or ‘gluten free sandwich’ or ‘gluten free roll’ that you can just grab off the shelf.
The only local shop that does a sandwich now is M&S who do a nice gluten free ‘chicken wrap’ or ‘BLT sandwich’ but that’s the only choice you have unfortunately (I can’t wait for the day you can have more verity like a gluten free ‘cheese or tuna sandwich’ to just grab and go!)

6. How has your diet changed since finding out you were coeliac?

It’s just not the same at all anymore, I literally do NOT eat anything unless I have checked the ingredients beforehand as I can’t risk any side effects. I definitely do not eat sweets/biscuits or junk food like I used too. If I find a chocolate bar for example that I can eat then I tend to stick to that one (especially if it’s from a vending machine) or I ask someone to buy me something I’ll stick to asking for what I know I can eat (unless I have a lot of time to go looking around and checking for all the ingredients myself) and fancy something different for a change. Otherwise fresh fruit and veg is fine but meats with any ‘sauces’ I must check the ingredients and anything with ‘breadcrumbs’ I don’t touch.

7. What would you say to anyone who has been diagnosed recently with coeliac?

It can be really easy to say ‘oh it can’t be that bad, I’ll just avoid pasta bread and flour’ but it then becomes very frustrating and upsetting when your first trying to change and realise that ‘wheat/flour/barley’ is used is so many other products that you had no idea they were used in. Sometimes you just don’t know if something is ok until you start to get a reaction. Foods Like ‘mustard’ for example appear in lots of foods and although a lot of mustard is ok some are not and you need to check.

The biggest thing I learnt is if you’re not sure DON’T RISK IT.
It can be really scary for some people at first having to get used to what you can and can’t eat but you will get used to it in time.

8. What restaurants/shops do you find cater well for people who need gluten free food?

Marks & Spencer are brilliant, I have noticed that most products now have the ‘Gluten free’ sign on packaging which is really helpful and a lot quicker to shop for. Tesco’s and Sainsbury’s have a bigger section of FREE FROM foods and slowly expanding (the smaller outlets still have a long way to go). Restaurants are much better but my favourite for eating out with no hassle is Pizza Express, Nando’s, Ed’s Diner (I had my first burger in 4 years a week ago and it was great!).coeliac

One thing you must NOT be shy of is asking the staff about Gluten Free food. They will either know or get a book out of ‘allergens’ to check for you. At first I was a bit embarrassed and felt awkward about asking but now I just ask and I don’t care if the person next to me has to wait a couple more seconds while they check for me.

9. Do you know anyone else who suffers from being coeliac?

Not anyone close or in my immediate family (my mum and sister did get checked for it) but the more I talk to people about it, I hear more and more people have it.

10. Is there a big difference in pricing when it comes to buying gluten free food?

Unfortunately yes but fingers crossed for the future!

11. Are there any other ingredients you have to look out for when choosing food, or is it just wheat/gluten?

Barley is another one but it’s so tricky because Maltodextrin is something to be careful of as this MAY also contain wheat but it should say on the packaging if it does. The Coeliac website is great for information on lists of foods that are safe Coeliac UK or the coeliac app is really helpful too.

12. What age were you when you were diagnosed with being coeliac?

I was 42 years old.

16. Does coeliac disease just hit you one day, or is it something you are normally born with?

I hear of more and more babies being born with it. It’s also something which people may have had for a while; but don’t know they have it until symptoms get worse. Or looked into at an early stage or the older they get. Also there’s been cases of people that have been misdiagnosed with IBS and Crohns disease. It’s definitely worth mentioning to doctors if you think you have any symptoms.

17.  Are other friends and family understanding with you? Or do they find it equally frustrating having to be pickier, when it comes to eating out?

They are brilliant to be fair! I’m sure it is frustrating for some of them to think about where we can eat on the spot; but all my friends are really patient about it with me and actually help out when buying food. They do this by letting me know if they have seen anything that I might like. Also they let me know if something has no wheat in etc. for me to eat.

18. Is it just food that coeliac affects or are there other things?

As far as I’m aware it is just food. However I do only use Gluten Free Shampoos and Conditioners; even though they do not have any known cases that this affects people in anyway. I would say to just be careful not to swallow any by accident when in the shower and washing hair.

Wow.. I couldn’t imagine the pain and frustration that people go through with being coeliac.. I can’t help but sympathise and try my best to raise awareness. Hopefully one day coeliacs like Michelle will be better catered for.

We hope this answers any questions people may have, and that you now have a better understanding of coeliac disease. If you have any more questions please feel free to leave a comment below! Michelle and I will respond to you as soon as we can!

NOTE: This post may contain affiliate links which means I’ll earn a bit of commission at no extra cost to you of course! 🙂 Read more about it here)

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9 Comments

  1. Great interview. I have celiac disease (diagnosed 4 years ago at age 17) and it is definitely not easy. However, it definitely gets easier the longer you’re diagnosed, the more educated you become and the more people with similar restrictions that you meet!

  2. Thanks for shedding light on this important issue! We frequently have customers stopping in to our brick and mortar store who have topical sensitivities to gluten, and we are proud to be able to offer a wide range of gluten free skincare and cosmetics! The more people who bring attention to this issue, the more we can come up with solutions to help those with gluten intolerances of all levels of severity live more convenient and comfortable lives by providing options that work for them! <3

    1. Hi Traci! Oh wow, that’s really helpful to Michelle, as she wasn’t even aware you could get gluten free skincare! Thank you so much for your input! 🙂 And well done for offering a good range for your customers! xo

  3. Great article! My daughter is a Coeliac, she is 15 now, but was diagnosed just before she turned 2, it’s been quite a journey. We can fully relate to the cross-contamination issue, experienced this a couple of months back, very frustrating 🙁

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