I have received several messages lately from desperate mothers telling me that their child has been diagnosed with celiac disease. I read their messages and feel their pain. If they had been diagnosed with celiac disease, not their children, they might have ignored the diagnosis to some extent and adapted as they went along. But in the case of their child, they want to do everything possible to make them well.
It’s normal to feel helpless in front of a new diagnosis, which you don’t know how to manage, and to want to make everything perfect for your child. Now there is an opportunity to inform yourself, there are many materials and people who have gone through the experience you are going through now, where you can inform yourself and adapt that information to your situation.
In this context, these mothers approached me and asked me what to do. I answered each of them individually, punctually to the questions asked, and in this article I want to share some general information born from my life experience. I have not been tested for celiac disease as most of you know, but I adopted a gluten free diet 12 years ago because it helps me better control my autoimmune disease, ankylosing spondylitis. I haven’t eaten anything with gluten since then, and if there’s one thing I’m sure of in this life, it’s that I’ll never eat gluten again.
Here are my tips, born from my 12 years of gluten-free experience and 9 years of gluten-free blogging.
To begin with, the kitchen and pantry will be cleaned.
Celiac disease is the only autoimmune disease whose mechanism is well defined. It does not need aggressive medication, as in the case of other autoimmune diseases. The remedy is clear: exclude gluten from the diet for life.
All the effort of people with celiac disease, and mothers in this case, must be directed towards removing gluten from the house, from life and from eating habits. I’m not saying it’s easy, but it’s not very hard either. It requires willingness and understanding from all family members. There is a lot of material online about what to do, you can find advice on this also in my booklet, “Gluten Free for Beginners”, which you can download for free.
The whole family will eat the same gluten-free foods inside the house as the child.
I don’t have children and I can’t claim to know how a mother feels when her child has to change their diet. But I was an 8-year-old child diagnosed with hepatitis in the early 80s. So I’m going to tell you about my experience as a child who had to eat “diet food” for a while.
I don’t remember much from my childhood, but one scene stuck in my memory like branded with red iron. Me crying in front of a table loaded with the dishes of that time: appetizers (roe, sausages, eggplant salad), meatballs and potatoes generously fried in oil, cakes filled with whipped cream. And my mother telling me that I’m not allowed to eat any of those goodies, that I’m sick and I have to eat diet food. I sobbed and I ate my boiled potatoes with no salt and a piece of grilled chicken breast.
Such a scene can be traumatic for a child. In hindsight, I know my mother was going to great lengths to find lean meat in 1979-1980. She couldn’t get meat for us all to grill, they ate what was available. But in my childish soul it remained that I was denied the food I was used to until then, that I was rejected from the family table and I did not understand why I no longer had the right to be part of that ritual.
So great care is needed. Now there is an abundance of food, everyone can find what food they want, there is an eating style for everyone. If a family member wants something with gluten, they can eat it outside the house, without the danger of contaminating the home kitchen with gluten, and out of sight of the child. Everyone will sit at the table, at home, and eat tasty gluten-free dishes.
I have 12 years experience in gluten-free eating, I assure you that there are delicious gluten-free versions of all the dishes you are used to. I’ve never craved something without being able to find a healthy, delicious gluten-free option. There are thousands of recipes, and on my blog you can find several hundred 😊.
Gluten-free does not mean necessarily healthy.
The intestine of a person recently diagnosed with celiac disease is severely affected and a rethinking of the entire diet is needed. See point 2, this can also help other family members. Commercial gluten-free products are not the healthiest food for a person with a gut damaged by celiac disease. Take advantage of the fact that you have to rethink your child’s and family’s diet and do it on the healthiest possible basis.
Do not give your child gluten-free commercial sweets, learn to make them at home. Stop frying food in rivers of vegetable oil, instead sauté, boil, steam or bake in the oven. Befriend the child with tasty and diverse salads. Use naturally gluten-free ingredients in their whole state, wash them well (meat, vegetables, legumes, fruits) and cook food from scratch. Use products labeled gluten-free where there is a risk of contamination (flour, semolina, yeast, baking powder, spices). There are Facebook groups where you can ask specific questions about specific products.
A person diagnosed with gluten intolerance may also have other intolerances.
For example, a large proportion of newly diagnosed celiacs also have an intolerance to lactose or milk proteins, so all dairy should be excluded, at least for a while. Do not give your child lactose-free milk, he could be allergic to milk proteins, not just lactose. An exclusion regime, like AIP, for a few weeks might be welcome, then reintroduce foods one at a time, slowly and patiently.
Explain to the child what is happening, in “childish” language.
“You are not allowed to eat this!” it does not help, on the contrary, it can have negative consequences for a long time. You can enlist the help of a counselor or therapist to help you explain to your child what is happening. Make him responsible so that he can take care of himself when it comes to food. You can’t be with him 24 hours a day, and it wouldn’t be healthy like that. He will have to avoid gluten for the rest of his life, and the sooner he learns that, the better. Don’t make a drama, don’t whine in front of him. Approach the subject calmly and firmly.
In this case, the saying “it takes a whole village to raise a child” is very current.
I welcome moms who ask for help and get information from different sources. Don’t expect everything to go smoothly from the start. The “village” has a role in encouraging and supporting the mother after failure.
Probably the hardest thing will be to make the loving grandparents understand what it is all about. Not to treat the child as a victim, as a sick person to be pitied and to have all his whims satisfied. It is called “celiac disease”, but if he eats correctly, the child is not sick, but a normal little man, who will grow into an adult responsible for himself, first of all, and with his future family and the whole world, secondly.
Children are in the mother’s energy
Mommy, take care of yourself! The child feels your worry, despair, feeling of helplessness. When I had hepatitis, my tests did not return to normal until my mother changed jobs. She had a well-paid, but very stressful job, she worked 4 shifts, and during the 6 hours she spent at work, she didn’t belong to herself. She didn’t have a personal minute, to eat, to drink water, to go to the toilet she needed an appointment. No one cared that she had a sick child at home. She was always tired, cranky, had no help, and as I said, getting good food was hard in those days.
She was exhausted and I wasn’t healing. She had to change her job to a lower paying one, but much easier. She had 2 normal 8 hour shifts where she could breathe, eat, drink water and call home to see what I am doing. Within a few months, my blood results returned to normal and I became a healthy child again.
Mommy, take care of yourself! Rest, don’t dramatize, take care and enjoy life! You have a good and beautiful child who will eat healthy from now on. You will lay the foundations of this diet for him, and this is how he will eat his whole life. Your child has the same energy as you, don’t forget that. If you are exhausted, he will be exhausted. If you’re nervous, he’ll be nervous too. But if you are serene and confident in the future, so will he.
