Coeliac Awareness Week: my gluten free girl
It’s coeliac awareness week; a week aimed at raising awareness of coeliac disease and the symptoms to look out for. It's important to consider the social side of being coeliac, and in this post I look at how it can impact children who have it. My 7 year old daughter was diagnosed with coeliac disease not long after her 6th birthday, so I have first hand experience not just as a nutritional therapist but also as a mother.
First of all, what is coeliac disease?
Coeliac disease is an autoimmune condition; when someone who is coeliac eats any gluten, even a tiny, tiny amount, the immune system reacts to it as a foreign invader, attacking both the gluten and the small intestine. If you have coeliac disease you have to follow a gluten free diet for life to protect the small intestine from damage, and to protect against malnutrition and the development of other autoimmune conditions, osteoporosis, cancer and fertility issues.
So are people with coeliac disease allergic to gluten?
The short answer is no. But it does set off an autoimmune reaction which attacks their small intestine so must be completely avoided. Those who are coeliac often find it’s easier to tell people they are allergic rather than try and explain their condition, which is hard enough for adults let alone children to fully understand. My daughter tells her friends she’s allergic to gluten and finds that much easier to explain at this stage. What it boils down to is she can’t eat any gluten, or any food that has come into contact with even the tiniest bit of gluten. If that means perpetuating the misconception that she is allergic to gluten for people to understand that every care must be taken to keep her food uncontaminated, then that will have to do for now.
What are the symptoms?
The symptoms are so diverse. Some have severe and varying symptoms of bloating, diarrhoea, constipation, nausea, vomiting, tiredness, skin rashes, anaemia, depression, lack of coordination, weight loss, mouth ulcers – but others have very mild symptoms or none at all. Coeliac disease is often missed - my 7 year old daughter had 2 negative coeliac screenings before her diagnosis. It is important to remember that coeliac disease can develop at any age.
How do you manage coeliac disease?
You have to follow a strictly gluten free diet for life. You can’t grow out of coeliac disease or get better. Even a tiny amount will damage the villi in the small intestines and make someone with coeliac disease ill, so avoiding cross contamination is important.
A lot of people think that if you have coeliac disease it’s just a case of not eating bread and pasta made of wheat, rye or other gluten. It’s so much more than that. It’s hidden in sauces and drinks, and added to all sorts of food, you really have to become an avid label reader.
What can’t you eat?
- Wheat (including, emmer (faro), einkorn)
What can you eat?
- Fruit and vegetables
- Coconut flour
- Almond meal
- Oats (must be gluten free *)
*The oats must be labelled gluten free as cross contamination is high. But even gluten free oats can be a problem for some as the protein – avenin – is similar to gluten and is an example of cross reactivity. Many can eat oats with no problems; my daughter eats a lot of gluten free oats; but for some they may experience symptoms similar to if they had eaten gluten.
This is a big issue and is where things get tricky, particularly eating out. Even tiny amounts of gluten can cause an autoimmune reaction.
It’s best to adopt a simple approach and aim to eat naturally gluten free foods. But you still need to be careful of the issue of cross contamination, usually during the packaging process. You get to know where you can buy things that don’t have a ‘may contain gluten’ label. I go to different shops for certain foods – for instance in some shops the dried lentils have ‘may contain gluten’ on the label, so you learn where the best places to shop are.
If your household isn’t completely gluten free you’ll need to take steps to avoid cross contamination at home. Grills and surfaces must be clean, foods can’t be fried in the same oil, you can’t use the same utensils; toasters, spreads, dips etc all need to be kept separate. We have a separate toaster for my daughter and never double dip with a knife in anything! It’s a steep learning curve and can be hard for people catering for a gluten free guest who don’t understand the implications of eating just a tiny bit of gluten. If you’re going to someone’s house for a meal it’s important to run through things with them to help them understand, and often it’s easier for them to just serve everything gluten free when catering for someone with coeliac disease to prevent the risk of cross contamination.
Gluten free products
It’s wonderful that there are more and more gluten free products available to help make life easier, but they should be treated with caution. Unfortunately they’re usually full of sugar and additives and may not be fortified like the gluten containing alternatives. They’re usually quite expensive as well. There are some good alternatives to the usual staples – we’ve found some very nice buckwheat pasta in Tesco which is 100% buckwheat flour, no added preservatives. This isn’t in the gluten free section but is stocked along with all the other pasta. They also do a rice fusilli, and Morrisons do a rice penne – also without any additives, just 100% rice flour.
It’s important to make sure that someone following a gluten free diet doesn’t rely too heavily on processed alternatives, and has other sources of minerals, vitamins and fibre that was provided by gluten containing ingredients they have removed from their diet.
Coeliac UK supports coeliacs in the UK in implementing a gluten free diet. For more information visit www.coeliac.org.uk
My daughter’s story
My daughter had on and off stomach aches, nothing that bad. She had aching arms and legs from time to time and headaches – all this was seen as very normal for a 5/6 year old. I didn’t agree. As she had a coeliac test when she was around 4 that was negative, the doctors didn’t want to do another test. It was only through my insistence that we had more blood tests, that we were referred to a gastroenterologist. She had a range of blood tests, and in the meantime his initial suggestion was to remove dairy. We had removed dairy previously without any benefits, but this time it had an instant effect. The stomach aches disappeared. We went for the follow up appointment happy that we’d solved the problem, to find out that despite the second coeliac test also being negative, her endomysial antibody results indicated that my daughter could have coeliac disease and would need an endoscopy to confirm. She needed to continue eating gluten every day for the next 6 weeks or so, to make sure the tests were accurate, which she did with no stomach aches and generally feeling pretty good. But her endoscopy showed damage to the villi in the small intestine – not a great deal but enough to diagnose, and this time her blood tests were positive for coeliac, although only slightly above the normal reference range.
Cutting gluten completely out of a child’s diet is challenging, but ever since her diagnosis my daughter has accepted that she can’t eat gluten so amazingly well. She never complains, and I can count on one hand the amount of times she said she wishes she could eat gluten. One time was when my husband took my other daughter to a party and I took her out for lunch. We chose a place we knew had a good gluten free menu with things she liked. When we turned up they had changed the menu and there was nothing gluten free on the kids menu and nothing she liked on the rest of the menu. She ended up with humous, which she liked, and some gluten free bread, which we were charged extra for but looked and tasted like cardboard. I felt so sorry for her – our nice lunch out left her feeling a little sad and starving hungry – even the ice cream for pudding couldn’t really make up for it.
Eating gluten free at home has been pretty easy and there wasn’t too much of an adjustment. Our younger daughter needs to eat gluten as there’s a chance she could have coeliac disease as well – it runs in families - so we need to keep giving her gluten for the tests to be accurate. Making sure she has enough gluten is what can be difficult at times as I don’t want to be cooking separate meals and it's just easier to cook gluten free to cut down the risk of cross contamination.
While eating gluten free at home is no problem, eating anywhere else isn’t easy. We can’t go anywhere without thinking and worrying about gluten. Parties are a minefield for the gluten free child. As a nutritional therapist I feed my kids healthy food, but I believe in the 80/20 rule, and parties are where the 20 part of the rule comes into force in full effect! My kids have a good idea of what’s healthy and what’s not, and that we’ll have healthier versions of treats at home. But I want to instil a healthy attitude to food so they can eat what’s on offer at parties or when they go to friends houses, within reason! But being coeliac means you can’t eat most of what’s on offer at parties. I usually check what will be served at kids parties and then take her own version of the food, even the fruit and veg on platters are off limits from the crumbs from sandwiches from other kids, unless she has a selection taken before everyone has tucked in. If my daughter is offered sweets she’ll take them so she doesn’t look rude, but if they’re not one of the ones she knows for sure are safe to eat she keeps them until she’s checked with me that they’re ok. I’ve left her at a couple of parties but only after I’ve gone through absolutely everything with the parents and she’s happy that they know what she can and can’t eat.
Her friends parents are brilliant and make a real effort to make her feel included. At one play date the mum had made some gluten free cupcakes. When they came out my daughter, as usual, hung back, assuming she wouldn’t be able to eat them. She was so delighted to find out they were gluten free and she could tuck in like everyone else. It’s things like that that really make such a difference so I’m very grateful when people do things like that and I know my daughter is as well. Kids just want to feel a part of things and not stand out as different. As she gets older that may be more of a challenge – not being able to eat the same things as her friends and having to double check everything. At the moment she knows I'll take charge in restaurants but it will be more intimidating when she has to do it herself. I think the mental and social aspect of coeliac disease, particularly for children, is something that really needs supporting, not just looking at what they can and can’t eat.
Being coeliac has not only made my daughter appreciate the effort people go to but it's also increased her appreciation of food. Yes there's a lot of food she can't eat and if we could change things we would. But looking on the positive side, she loves it when she finds new gluten free foods she likes, and she's happy as long as there's an alternative she can have.
Spontaneous family meals out are a thing of the past – most pubs near us don’t cater well for gluten free and the risk of cross contamination in places that aren’t used to catering for gluten free diners is high. If we want to go anywhere I have to do my research in advance and usually take a selection of snacks with us. There are lots of places though that are great for coeliacs with more choice than ever. We find chain places cater best for the gluten free food she likes at the moment, but it’s always lovely to find independent places with different menus and London has lots of options. I'm hoping that by the time she's older and starts going out for meals with her friends there will be even more choice.
Gluten free is often misunderstood and seen as trendy. People often don’t understand the difference between someone who is intolerant to gluten and to someone who has coeliac disease. I was in the supermarket recently, near the gluten free section, and overheard a man ask his wife what the food in that section was. When she told him it was gluten free he looked horrified as he blustered about that disgusting, ridiculous food. For some reason it seemed to offend him. The ignorance of some people makes me furious and sad in equal measure, and I was glad my daughter wasn’t with me. But perhaps if he had more of an idea of the implications of eating gluten for people with coeliac disease, and that following a gluten free diet was not a choice, he might not have such a negative reaction to food that was there to make their lives easier. Educating people really is key, and that's why initiatives like coeliac awareness week are so important.
My daughter’s diagnosis means we have to do things differently. But she is so healthy and full of energy, we’re very lucky she was diagnosed as early as she was. Coeliac disease can be hard to diagnose and the symptoms are so wide and varying that they can be mistaken for many other things. The average time for someone to be diagnosed with coeliac disease from when symptoms first appear is 13 years, which is something that really needs to change. If you have any symptoms that you can’t get to the bottom of that sound like any of the ones mentioned above, then speak to your doctor. It's important you don't stop eating gluten before you speak to your doctor, otherwise any blood tests to determine if you have coeliac disease won't be accurate.