An Open Letter to GPs and Paediatric Gastroenterologists
From a mother of a teenager with Coeliac Disease
LISTEN, DON’T JUDGE AND LOOK AT THE BIG PICTURE
Six months ago#, I took my 15 year old son to the doctor’s for yet another bout of gastro and stomach cramps. He had been off school for three days which had been preceded by a day off school 10 days previously.
Luckily this doctor, not our usual GP, listened. I was convinced that my son must have had some bacterial infection or parasite that just wasn’t going away, as 6 months previously he had missed some 10 – 12 days from school over a period of a month. And this GP listened when my son tried to put into words what his cramps felt like.
This doctor did not judge: he did not judge me or my son and sent my son off for tests.
And he listened.
As I glanced at the request for blood testing, I saw that the doctor was screening my son for Coeliac Disease.
Suddenly, the last 12 – 13 years all made sense.
In September the previous year, I had taken my son to our GP twice to discuss the latest ongoing or recurring bout of gastro and debilitating cramps and to obtain medical certificates for the school. We discussed the normal treatment which included hydration and a gradual return to food with a dry biscuit or toast. As well, a stool sample was taken. But I do remember the look I was given: that look which bordered on, this mother is overly sensitive to the workings of her son’s bowel movements and/or maybe this teenager is avoiding school.
Our visit to a Paediatric Gastroenterologist some 12 years previous also saw my son’s problems summarily dismissed. After some 1 – 2 years of ongoing bouts of gastro, my toddler’s stomach cramps had escalated to the stage that my husband and I took him to the hospital in the early hours of one morning. From there, our GP referred us to a specialist who took a summary of our boy’s health, asked pertinent questions about milk, cordial and fruit juice consumption and then explained that gastro bugs tend to spread among toddlers at Day Care.
“ But our son doesn’t go to Day Care” we said and I then remember the look I was given: that look which bordered on, this mother is overprotective of her son and/or overly sensitive to the workings of her son’s bowel movements. Suddenly, my son’s health outcomes were judged on how the Paediatric Gastroenterologist saw me. Did he listen to find out that on the days I worked, my son was cared for by a nanny or that at home I also had a preschooler and two teenagers? This judgement was further reinforced by his parting comment at the end of our second visit : “And when is your son going to Preschool?” Our boy was only 3!*
On our return visit to the specialist, and after blood tests which all seemed fine, he commented that he could send us off for more blood tests but he didn’t think this was necessary or he could do an endoscopy but he also believed that this intrusive procedure was not necessary. I cannot remember him ever mentioning our son being screened for Coeliac Disease. And the specialist did not mention endoscopy in any context. And off we went, still without answers as to what our son’s health problems were.
In those intervening 12 years, my son continued to have ongoing problems with gastro, vomitting and stomach cramps. And we continued to visit our GP for advice and treatment. Rotavirus. Giardia. Tummy Bug. Virus. He was even tested for Cryptosporidium. We installed a water filter to filter out any nasties but still the bouts continued sporadically. I suppose after a while, I even came to believe these problems were normal. It was just something going around, although I never could fully understand why only my youngest always seemed to get that “something” that was going around.
Luckily for my son, it only took 12 years before we found a doctor who listened and didn’t judge and we thank this doctor for looking at the “big picture” and searching for some answers.
My son’s journey is similar to so many others who eventually find themselves with a diagnosis of Coeliac Disease.
And I am sure that these people also wished that their medical practitioners listened, didn’t judge and looked at the big picture.
Always a Mum
*Preschool age was 5 years old.
# I wrote this six months after our son KJ was given his Coeliac Disease diagnosis. It took many months for my anger to subside and be replaced by disappointment for the many times our family doctor had failed my son.
Last week I literally had my husband driving all over the city trying to find me a packet of bread mix. The Laucke GF Bread Mix is a must have pantry item as I use it for : bread rolls, wraps and flat breads.
After visiting 5 supermarkets, he came home defeated. There was no Laucke Gluten Free White Bread Mix to be found. We all know that feeling: what do I use now. Just when you settle on a product that you learn how to handle, it disappears.
I felt that if need be, I would ring all the supermarkets in Townsville to find out where I could find a packet or two. It wasn’t as if they had replaced this gluten free bread mix with another bread mix product. There was no space on the shelf. It was just gone.
With a bit more time toward the end of the week, I asked at the customer service desk about the product. The helpful lady brought the item up on the store’s computer and told me that there were 6 packets in stock. No way… I had checked three times and there was none to be seen.
The problem was three fold: firstly the product has been repackaged and no longer looked like the old product, secondly the supermarket now shelved it in the baking section and not in the gluten free section and thirdly the words gluten free are not easily noticed as they disappear in amongst the folds of the packet when it sits on the shelf.
Good news though it that it is now soy free as well. The soya flour has been replaced with chickpea flour. Not sure if the product will still handle like the old product, but here’s hoping.
So now this gf bread mix is in a 500 g packet as opposed to the box of 2 packets of 500 g and be careful because all Laucke products look the same and one could easily select the ‘normal’ bread mix.
Bonne Maman is well known in Australia for their jams but I have now found their Caramel Spread and have already found many practical uses for it :as a topping for ice-cream, as a dipping sauce for Ricotta Dumplings, as decoration for pavlovas and it is delicious with pieces of banana. And I am sure I will find many more uses for it.
We all have our favourite Caramel Sauce or Dulce de Leche recipes, but Bonne Maman’s Caramel Spread is a quality stand-by that while not overly sweet, it is deliciously yummy.
I have found it stocked at Woolworths and IGAs.
Dip 1: Creamy Corn and Bacon Dip
This first dip is my second youngest son’s signature dish.
If we are having a family gathering, we ask RC to make HIS dip and it always pleases.
250 g jar corn relish
300 ml sour cream
1. Fry bacon until crisp and allow to cool on paper towel.
2. Mix bacon, relish and sour cream in a bowl.
3. Refrigerate for 30 minutes to 1 hour.
4. Garnish with chopped shallots or parsley.
5. Serve with bread or crackers.
Dip 2: Cheesy Corn Dip
I put a jar of corn relish in the shopping trolley and spied a recipe on the side of the jar, which I have included below. Just a gentle reminder to myself that often you find a good recipe when you aren’t looking.
250 g light cream cheese
1/4 cup grated tasty cheese
150 ml light sour cream
250 g corn relish
1. Place cream cheese and grated cheese in a small saucepan and cook over low-medium heat until cheese is melted. Allow to cool slightly.
2. In a bowl, combine sour cream, relish and cheese mixture.
3. Serve with vegetable sticks, crackers or corn chips.
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.
The concept for this dish comes from a very, very mediocre dish from my boarding school days. While the dish served up at boarding school only had a hint of bacon and the sauce was quite watery, two of my sisters and I later developed our own version of “Sunday Corn”.
Most of our family dishes start with a samfaina which is a stock standard base for many meals : olive oil, onions, garlic, capsicums, tomatoes, bacon, chicken stock. From this base, you can launch out and add meat, vegetables, rice… the options are limited only by your imagination.
2 teaspoons olive oil
1 tablespoon butter
1/2 large onion, finely diced
1/2 red capsicum, diced
2 rashers bacon, finely diced
2 clove garlic, finely chopped
1 tablespoons tomato paste
1 can tomatoes diced
1 tablespoon sherry
1 teaspoon chicken stock powder
1 can corn, drained
Salt and pepper to season
Heat olive oil and butter in a medium frying pan.
Add onion and bacon and fry until onion softens.
Add capsicum and garlic and fry for 2 – 3 minutes.
Add tomatoes, tomato paste, stock powder and a tablespoon sherry.
Stir and simmer for 10 – 15 minutes until sauce is reduced.
Add corn simmer for 5 – 10 minutes.
Serve on toast or as a side to a meal.
Heinz have introduced a gluten free range of biscuits and pastas and we are finding these products now on the shelves in the supermarkets.
I haven’t tried the pasta range yet as we have settled in to San Remo as our preferred pasta for the time being. Love to know people’s thoughts on the taste and texture of the pastas.
We have enjoyed the crackers. They are very much like the Freelicious crackers in taste and texture. A little pale in colour (colour being an important criteria for my gf teenager), they went well with pesto and cheese. I found it interesting that the crackers are “Made in Italy”.
My son has struggled somewhat with finding a savoury biscuit to his liking. He loves the Glutino Bagel Chips BUT somewhere between USA and Australia, most of the bagel chips break and so we are left with a packet of bits and pieces.
These Heinz crackers however are sturdier with very few broken crackers in the box.
This is one of those desserts that people often put in the “too hard basket” and so see it only as a restaurant dessert. Some days, for me, the hardest part of the recipe is the caramel: last time I made it I crystallized the first batch and then I burnt the second batch. I was preoccupied, so the message is to keep your mind on the task when making this dessert. The other problem can be over baking the custard. It needs to be cooked until just set when a knife is inserted in the centre as it will continue to cook and set as the custard cools down.
I thank my mother for this recipe and for making it a dessert not to be scared of. It was always a family dessert, nothing special except for the toffee shards which we scraped out of the bottom of the bowl. Best made the day before.
Serve with fresh strawberries or balsamic strawberries.
Mum’s Baked Caramel Custard
1 cup caster sugar
4 tablespoons boiling water
Combine in saucepan and stir. Boil without stirring until golden in colour. Do not stir as the sugar will crystallize.
Pour into 4 cup ovenproof bowl and swirl toffee around the sides of the dish. Allow to cool.
2 tablespoons sugar
2 tablespoon full cream milk powder
2 cups full cream milk
1/2 teaspoon vanilla
Combine all ingredients in a bowl and beat until combined. Pour custard through a sieve into toffee coated bowl.
Line a baking dish with a tea towel. Place bowl into dish and pour boiling hot water into baking dish until 1/2 way up bowl. Place in 180 C oven for 1 – 1 1/4 hours or until custard is just set when knife is inserted in the middle. Remove from water bath and allow to cool. Once cooled down, refrigerate overnight.
Another option is Donna Hay’s Recipe for individual creme caramels.
I have had a bit of fun with blueberries of late, so here are a couple of ideas using either fresh or frozen blueberries.
This comes from the taste.com.au Gluten Free Recipe book. A dessert type cake, this goes wonderfully with custard.
I sprinkled the muffins with demerara sugar before baking.
4. Blueberry Cake
This is a moist and easy to make cake and presents quite beautifully. Because of its high butter content, it is not an every day kind of recipe, but if you are looking for something a little different for an afternoon tea or special occasion, then give this one a try.
butter 250 g softened
caster sugar 2/3 cup
orange 1, zest, 1/2 cup juice
gluten free SR flour, 1 3/4 cup
blueberries (frozen or fresh), 1 cup
1. Preheat oven to moderate 180 degrees C. Lightly grease and line a 14 cm x 24 cm loaf pan with baking paper.
2. In a large bowl, using an electric mixer, beat butter and sugar together until pale and creamy. Beat in zest.
3. Add eggs one at a time, beating well after each addition.
4. Lightly fold in flour and juice. Fold in berries. Spoon into pan, smoothing top. (I suggest pouring half to two-thirds of the cake mixture into the pan first and then layering the blueberries before topping with remaining cake mixture. It stops the run of colour and the blueberries sinking to the bottom)
5. Bake 55 -60 minutes until cooked when skewer comes out clean. Cool in pan before lifting onto a wire rack to cool completely.
6. Dust lightly with gluten free icing sugar mixture.
(from Woman’s Day Gluten-free baking recipe)
What a surprise to see a recipe on the back of a packet of frozen raspberries that not only looked easy and simple but more importantly was a recipe for which I had all the ingredients at hand.
Okay, while my photo highlights my need to have lessons in photography and styling, I must reinforce that one “shouldn’t judge a book by its cover”. It was delicious and refreshing and I will make it again.
My lesson of the day is that recipes will sometimes find you. Too often I find myself wasting time looking for inspiration and a new recipe. Sometimes, however, the best recipes aren’t from that expensive recipe book you thought you needed but are the ones that just land in your lap.
Raspberry Dream Delight
1 1/2 cups frozen raspberries
1/3 cup sweetened condensed milk
1/4 cup thickened cream
1 tablespoon lemon juice
1 tablespoon caster sugar
1 teaspoon honey (I would start with 1/2 teaspoon next time and add to taste)
In a blender, combine all ingredients and blend on high speed until smooth.
Transfer to a plastic container with a lid, cover and freeze for 4 hours or until solid.
Let stand a few minutes at room temperature before serving.