Newly diagnosed – then you will referred to a dietitian to help you will your transition to gluten free. From experience, I would like to offer a few words of advice for dietitians consulting with those new to coeliac disease.
To the Dietitian supporting a newly diagnosed Coeliac disease sufferer…..
- Know a little about your client and be prepared – the dietitian we visited bumbled his way through his notes mumbling that he wasn’t quite sure the condition my son was referred to him for but as he was a teenager and was referred to by a gastroenterologist then it was most likely one of two conditions. The fact that he knew my son was a teenager and the specialist who referred him meant that he did in fact receive the referral and should have been prepared but ….
- Remember that one size does not fit all– have age specific literature at hand – our dietitian showed us a pamphlet, said he only had one copy and would post a copy in the mail. The pamphlet we received was actually targeted for those aged 6 – 10 year old and was not the one we had been shown. My son was 15 years old. Be mindful that a client with coeliac disease is different to a client who is going ‘gluten free’ for other reasons. Be mindful that an 80 year old eats and cooks differently to a 20 year old uni student. Be mindful that emotionally a 55 year old will deal with a diagnosis differently to a 10 year old.
- Acknowledge that you have two clients in your room – the parent and the child. Both have specific and very different needs. Address the primary client – the person with coeliac disease. Our experience saw my son largely ignored with little attempt to engage him in conversation or ask questions of him. My son felt alienated as was clear by his body language as he pulled the hoodie of his jacket over his head and slumped down into the chair. A friend had the dietitian eye her other child and launch into the urgent need for him to also be screened. In an instant my friend had two insecure children and she felt even more overwhelmed than she did before her visit.
- Acknowledge that in the short to medium term the journey is difficult and confronting and time consuming – Never say “but there are some many products you can buy these days that are gluten free” or “a gluten free is relatively easy to adjust to if you make a few little changes” or ‘there is a whole aisle of gluten free products in the supermarket”.
- Speak from Experience – purchase a range of gluten free products and taste test them. Have a staff taste test. Have a family taste test. Experience for yourself how disgusting ‘Aussie Mite’ tastes or maybe have one of your own children taste test for you and get their honest feed back. Try some of the gluten free biscuits and experience how different the texture and taste is. Try a sandwich using gluten free bread to see how well it handles. Have a go at baking gluten free bread and experience how different the texture is. And please please don’t suggest to a teenager gluten free weetbix – taste it and see what I mean.
- Be Realistic – Is it really realistic to send a teenager off to school with a can of baked beans and a fork and expect them to sit with their friends on the school oval and eat cold baked beans for lunch? This suggestion we were given was wrong on so many levels and certainly did not take into account how different the teenager with coeliac disease is already feeling and at a time when teenagers don’t want to be conspicuous, the dietitian was suggesting the teenager make themselves even more conspicuous. This suggestion was not one of transition and small changes but a total shift from what used to be “normal”. It was like telling someone they need to fly to the moon to get a cup of water.
- Support the guidelines of Coeliac Queensland – A friend told me that the dietitian said that it was okay to eat products with the statement ‘may contain gluten’. FYI – Coeliac Queensland’s statement is : ‘It is also important to avoid cross contamination by avoiding products with statements such as ‘may contain gluten’. More importantly, it is one thing as an adult with coeliac disease to ‘take risks’ but it is another thing for a parent of a child to encourage their child to ‘take risks’. As the parent, we have a duty of care to teach our children about the importance of their need to be ‘gluten free forever’. We have a duty of care to teach our children to take responsibility for their life long gluten free diet and therefore we should NEVER EVER encourage our children to take risks. We must teach them so much about their new gluten free lifestyle and ‘taking risks’ is certainly not one of those lessons. An adult coeliac who takes a risk can then honestly evaluate if they suffer from the possible contamination. A parent encouraging their child to take a risk cannot honestly evaluate the possible side effects of contamination. More importantly for a sufferer of coeliac disease who is asymptomatic then how can they judge whether their health is being compromised other than another round of blood tests and gastrostrophy.
- Don’t Give False Hope aka Don’t Give False Information – My friend told me that Allens Red Frogs were okay because the dietitian told her daughter that she could eat them. My response was that I was 99% sure Red Frogs contain wheat, because if they didn’t, then I would have a jar full of them at home. I also do acknowledge that over time companies do change recipes and that possibly this had happened with Red Frogs. However: Ingredients of Red Frogs: Glucose Syrup (Wheat or Corn), Cane Sugar, Thickener (1401 or 1420) (Wheat), Gelatine, Food Acid (Citric Acid), Flavour, Colours (120, 122). When one consults Coeliac Australia’s Ingredients List it identifies 1400-1450 (wheat): meaning that the thickener in Red Frogs contains gluten and is therefore a ‘no go’ item.
- Don’t Confuse – It is all well and good telling someone about Teff and Quinoa and Sorghum and Millet and Buckwheat as a way of communicating that there is a range of grain options out there that are gluten free, but when the newly diagnosed is struggling with restrictions and major changes to their lifestyle and diet, then they are not going to want to experiment with ‘new’ produce. One really needs to be a confident cook to branch out, especially in the beginning. Don’t say: if you like your porridge then you can cook quinoa porridge. This is not a substitute in any shape or form; it might be trendy, but it is most definitely not palatable.
- Set Your Client up for Success and Confidence – Additionally to the advice and guidelines and list you provide your client with, tap into another valuable resource: other coeliac disease sufferers or mothers of children with coeliac disease. It might be worthwhile contacting your local Coeliac Support group for some grass roots advice: easy and simple recipes, tried and tested handy hints, a list of realistic and acceptable lunch box suggestions, seeing if there are members with whom you could pair your client eg another mother of a teenager, another adult who has Type 1 diabetes and coeliac disease.
My son’s experience at his dietitian’s appointment will most likely mean that he will never again visit a dietitian. He felt alienated, he felt ignored and he realised that ‘the experts’ really don’t understand how frightening and confronting a diagnosis is. Unfortunately, this is not the outcome I wanted for my son. I wanted my son to be guided and supported and should in the future he need advice about his diet, then he would have no qualms about booking another appointment with a dietitian.
Please also take time to undertake a little self-evalutation and put yourself in the client’s shoes and walk around in them for a week or a day or for just a lunch and try to see their gluten free journey through their eyes.
A Mum of a teenager with coeliac disease
gluten free preparedness clarity REALISTIC
honesty PERCEPTIVENESS coeliac disease
Usually, I do all the recipe spotting, but it was my gf son who found this recipe for Buttermilk Onion Rings and asked “how difficult is it to convert it to gluten free?” To which the answer was “should be easy”.
And easy it is….
3/4 cup buttermilk
1 cup gf plain flour
1/2 cup gf cornflour
1 large brown onion, sliced into 3mm thick rings and separated
Canola oil for deep frying
Using a deep fryer* is best but you can also use a large heavy saucepan half filled with oil on medium-high heat.
Place buttermilk in a bowl.
Place flours in a flat dish, stir to mix the two flours and season with salt and pepper (you can add paprika).
Work in batches. Toss onion rings in the flour mixture and then dip the rings into the buttermilk and let excess drip from rings before returning to flour.
Fry onion rings in batches for 3 minutes or until golden. Remove and transfer to paper towel. Season lightly with sea salt.
There is a bacon ailoi in the recipe which is very tempting indeed.
*Deep Fryer – If you have kitchen cupboard space then I suggest a deep fryer as I find the temperature is more controlled than in a saucepan on the stove. I use it for Ricotta Dumplings, Sweet Potato Chips, our alternative to KFC
A gluten free diet for a child or teenager of coeliac disease requires a team effort.
Family members and friends become an important support network to minimise gluten contamination.
Siblings accept some changes to their own diet and also have to learn protocols regarding cross-contamination.
Parents source gluten free products and step outside their comfort zone to bake gluten free bread and make gluten free look appetising.
Grandparents scan magazines for new gluten free recipes and also learn to cook ‘gluten free’ for those special occasions.
Friends take on responsibility to make sure gluten free is on the menu at social events and functions.
Last week had my gf son, KJ and myself bond over a team effort to make Strawberry Jam. At this point, I will point out that I have never made jam myself. At KJ’s instigation, I purchased the ingredients.
Mum: Have you had a look at a few recipes for how to make Strawberry Jam?
KJ: No, but it can’t be that hard. (I hope she doesn’t take over like she normally does)
Mum: Well I printed three recipes that I think you should read first as they all different regarding ratio of sugar to strawberries. Do you want to use lemon juice, chia seeds, vanilla seeds as there are many variations on a theme?
KJ: How many strawberries do we have?
Mum: Well I think you should sterilize the jars first and I like this recipe but you have to let the strawberries and sugar sit for 1 – 2 hours. And don’t wash the strawberries, I am sure I read somewhere that the excess water will make the strawberries too soft.
KJ: Any chance of you doing the jars and I’m not waiting 2 hours before I can cook the jam. (Weighing, cutting and sterilising jars all at the same time)
Mum: Have you decided which recipe to use?
KJ: Simple… I’ll use the recipe on the (jam setting) sugar packet. I don’t know why you make things so complicated.
Mum: (Neither do I, but I always thought research was a good way to start if you wanted to succeed) Have you put two plates in the freezer yet?
Mum: Because it says here in MY recipe that you need cold plates to test if the jam is ready.
KJ: Yep, this is looking good and EASY. (I told her so)
……continued banter regarding colour, what a rolling boil is, how long to boil for, if the sample was set etc…
KJ: What other kinds of jam can we make? What goes in a marmalade? What about mango chutney? Grandad used to make mango chutney.
Mum: (I wish KJ was more careful when he poured the jam into the jars and cleaned up the spills) What great colour! (Maybe this time I can entice KJ to have a photo taken for my blog) You do know that I am already drafting a blog in my mind while we have been doing this!
KJ: Do you think Grandad would like a jar of jam?
Team Work : Success Guaranteed
I hadn’t given much thought to making a sweet and sour Chinese recipe but we were introduced to this meal recently as it is one of two gluten free menu options at a local Thai takeaway. So out came my Woman’s Weekly Chinese Cooking Class Cookbook circa 1980’s. To my surprise, I found many recipes which are suitable for people who eat gluten free : Sate Beef, Beef with Black Bean Sauce, Beef with Noodles, Ginger Garlic Chicken, Chicken and Almonds, Spiced Chicken, Spiced Pork. So long as you use gluten free noodles, soy sauce and noodles, as well as check your spices, a majority are great gluten free recipes. Upon reflection, Chinese recipes seemed to have gone out of fashion as we have adapted our tastes to Thai and Vietnamese inspired meals, but I now have a number of recipes marked for future dinners.
Sweet and Sour Pork
1.25 kg lean pork chops
2 teaspoons sugar
3 tablespoons gluten free soy sauce
1 tablespoon dry sherry
1 egg yolk
Cornflour gluten free
Oil for deep frying
1 large onion sliced
8 shallots sliced diagonally
1 red capsicum cubed
125 g mushrooms sliced
1 medium cucumber, remove seeds and cut in slices
2 sticks celery sliced
3 tablespoons oil
470 g can pineapple pieces, drained reserve syrup
2 tablespoons tomato sauce
¼ cup white vinegar
1 cup water
1 chicken stock cube
1 ½ tablespoons cornflour, extra
Combine sugar, half soy sauce, sherry and egg yolk and stir well.
Cut meat into 2.5 cm cubes and place in marinade. Stir until meat is coated. Cover and leave for 1 hour.
Drain meat from marinade and reserve liquid. Toss meat lightly in cornflour.
Heat oil, cook meat until golden brown and cooked through (about 7 minutes). Do this in several batches. Drain meat on paper towel. (I use a small deep fryer which cooks the meat efficiently)
Heat 3 tablespoons oil in large pan and add all the prepared vegetables, sauté three minutes.
Add pineapple syrup with marinade from meat with remaining soy sauce, tomato sauce, vinegar and stock cube. Blend extra cornflour with water and add to pan. Stir until sauce boils and thickens.
Add pineapple pieces, season with salt and pepper.
Add pork, stir through until combined and meat is heated through.
I’ve been given the honour of reviewing a self published book by Erica Brahan “A Teenager’s Perspective on Food Restrictions”. Erica has not only written a book but she also has a blog and a facebook group for teenagers who suffer from food allergies and are on restrictive diets: Erica’s Story.
This book is primarily for teenagers but it is also for their parents. Some teenagers are not so open and willing to share their feelings, so this book gives parents an insight into how their teenager might be travelling and the types of challenges they have to deal with.
Erica’s book is about honesty and advocacy and deals with the everyday realities of dietary changes and food allergies.
Positivity – “the positives that come from changing your diet will far outweigh the challenges”
Perspective – this is a teenager’s perspective without the gloss. Erica is honest and she is spot on when she explains that while all age groups will have difficulties with dietary challenges, the challenges are magnified for teenagers and young adults because of all the emotional and social factors involved with this age group.
Planning – at school, going to college, social life and dating, menu planning. Erica covers lots of the practicalities, the advice that she wished someone could have given her at the start of her journey.
Patience -dietary change is a process and Erica’s honesty that “you will mess up” takes away that feeling of failure. And when you have multiple food allergies, you have to be patient with the food eliminations trials as it is worth it in the end. “The reward of reaching your goals and being healthy will be longer than the journey of getting there”
Teenagers who have coeliac disease and must follow a gluten free diet might find these teen specific resources also helpful.