This article focuses on some essentials points to consider when you are newly diagnosed with coeliac disease. In it, we share our initial celiac diagnosis experience and our journey through the gluten-free world. It is a journey that took us from the initial diagnosis to the first experiences of living and caring for a child with coeliac disease. This article will provide you with some useful tips to assist you during the initial period.
When we were first confronted with our son’s diagnosis of coeliac disease, we felt a little overwhelmed and as it dawned on us what it meant to have a child with coeliac disease, it felt like our world had caved in on us! A lot of simple pleasures, especially for youngsters, like having pizza, was no longer an easy option at home or in a restaurant. Even take away food would be difficult to find.
Typical Celiac Symptoms
Some typical symptoms of coeliac disease in children are:
- abdominal bloating and pain
- chronic diarrhea
- pale, foul-smelling, or fatty stool
- weight loss
- delayed growth and puberty
- short stature
- failure to thrive
- Attention Deficit Hyperactivity Disorder (ADHD)
Typical symptoms in adults include:
- unexplained iron-deficiency anemia
- bone or joint pain
- osteoporosis or osteopenia (bone loss)
- missed menstrual periods
If you think you or someone you care about may have coeliac disease, have a read through the symptoms and consult your doctor and discuss your concerns and get tested by a doctor. The over-the-counter gluten antibodies tests are generally not overly reliable and thus we would not recommend using them for they may lead to false positive/negative results. This in turn could complicate and lengthen the time until a proper diagnosis can be made.
Personally, I remember thinking “Oh no, we won-t be going to Italy on holidays anymore…. with all the fantastic but gluten-containing pizza and pasta that is consumed there. How unfortunate! We really loved going to Italy in the past. Surely, our son will not find anything to eat there.” We didn’t know then that because of the high prevalence of coeliac disease in Italy, it is actually an excellent destination for coeliacs! More in our article about gluten-free travel to Italy…
I was motivated to gather as much information as possible about the disease, so that our son would have an easier time to adjust to his new and strict life-long diet.
Knowledge is power and, in his case, knowing as much as possible about coeliac disease has had a significant positive impact on his health and well-being.
Visit A Certified Nutritionist
We started our discovery journey by visiting a nutritionist a few times and were schooled about the ingredients (look out for our article to be published in the near future) which were now taboo and had to be excluded from his diet. It is important to know what foods are allowed on a gluten-free diet and which foods are not. A coeliac (or the person preparing food for coeliacs) has to be mindful of how the food is prepared; avoiding contamination of the food at every stage of the cooking and serving process. This begins in the grocery store when buying basic ingredients naturally gluten free (e.g. fruits, vegetables etc.) but also by carefully reading and interpreting labels of packaged or processed foods (this is when I discovered that I needed to invest in some reading glasses!)
Read Labels for Carefully (and be skeptical)
The international symbol for gluten-free products is a wheat stalk symbol that is crossed out, though sometimes the product will be labelled as “Gluten Free” or “Certified Gluten Free” without a symbol. However, one must still be vigilant and check ingredients!!!
Depending on where you live (we live in Europe), the labelling rules will differ, so exercise caution and arm yourself with the information you need. Especially when considering packaged foods, you could check the website of the food manufacturer to see if there is additional information in case not otherwise labelled. There are also gluten-detector apps whereby you scan the product barcode and you receive information on whether the product is gluten-free or not. These apps are as good as the database behind and we advise not to blindly trust them. Use common sense and check online, ask a store clerk etc. before purchasing. Some apps take input to improve their database of knowledge.
Clearly, any packaged foods that are certified are suitable for people with coeliac disease. But what happens when there is no gluten-free symbol? How can you tell whether this product is still safe to eat or not? We had to learn about which grains contain gluten and what is naturally gluten free but also discovered that even gluten free grains (e.g. quinoa) may either have problematic ingredients or have been contaminated during the processing and packaging phases. We thus adhere to the adage, “when in doubt, leave it out”.
Another important step once you have been diagnosed with coeliac disease is telling anybody, who is directly involved in the preparation of your food, of your special requirements. This means instructing supportive family members like grandparents or other family members and anybody else (e.g. day care providers,) who regularly prepare food.
Preparing to Live a Gluten Free Life (as best you can)
If you are an adult and single, you may re-arrange your kitchen entirely. However, if you are unable to keep your kitchen entirely gluten-free (because you live with other people who do not have to follow a gluten-free diet), it is a good idea to reorganise the kitchen so that all the gluten-free ingredients and utensils are kept separately from gluten-containing or contaminated items. This is an important first step and it makes it both physically and mentally easier for everyone to manage and better cope with the new situation.
List of Key Utensil Purchase for Gluten Free Living
Although for some people it is possible to have two ovens, for most this is not an option, so the importance of keeping appliances clean, takes on a whole new dimension! Even if your kitchen is small, there are certain utensils of which you should have duplicates for those on a gluten-free diet. We suggest either to label them or buy them in different colours and use colour-coding and store them in different drawers and cupboards. As mentioned, we have designated different cupboards for gluten-free products and utensils.
From our experience and due to the nature of gluten (it’s a rather sticky substance!), some of the important items that you may want to keep solely for gluten-free products are
- Spatulas/wooden spoons
- Baking trays/Pizza trays
- Separate sieves for sifting flours, washing grains and pulses
- Chopping/bread boards
- Brush for basting/spreading
- Butter dish
With time, the process of preparing gluten-free and normal foods simultaneously will come naturally to you. For example, we started purchasing honey in a squeeze bottle format rather than in jars – to prevent anyone from using a spoon to spread on the bread and replacing the spoon into the jar (which leads to the contamination of the entire honey!)
Constant (Gluten Free) Food Thoughts
When you are first diagnosed with coeliac disease, other than thinking about what it is, the central thought is about what is and what is not safe to eat. Learning to prepare or obtain gluten-free meals without risk of contamination, your mind continually races into food-related topics since coeliac disease is essentially preventable through the procurement, preparation and consumption of gluten free foods, but it is nevertheless complicated due to our busy lives and (usual) reach for food convenience.
If you are care for others i.e, a child/dependent, you will doubly worry about many facets including;
- Where can we go on holidays with our coeliac child?
- Can my child still go to birthday parties?
- What about school field trips, summer camps and so on.
The answer to all of these questions is: YES. You can still eat out, travel, allow your child to go to parties, trips and summer camps. HOWEVER, good preparation is involved. You must do your research beforehand, so things like spontaneous visits to restaurants with your coeliac child is no longer possible (unless that restaurant has gluten free options – though we always triple check what they mean, more of this in another post). Some simple yet obvious things that you need to consider include:
- When you or your child is invited to a party, you will have to get in touch with the host and inform them quite extensively about food preparation and the disease.
- Going on holidays also needs a lot of research – is coeliac disease catered for at the destination? (We aim to discuss some destinations in upcoming posts)
- Which destinations are especially favourable or difficult for coeliacs?
- How can you get creative and think outside of the box (for example, by changing accommodation type from hotel to apartment or Airbnb, for example)?
Adapting Your Ways to Coeliac Disease
As previously mentioned, when our son was first diagnosed with coeliac disease, we were initially devastated, but soon thereafter, realised through research that knowledge is power. The more information we accumulated, the easier it became for us to help ourselves and our son adjust to his life-long condition and strict dietary restrictions.
We learnt that it was also a wonderful opportunity to become extremely creative with our cooking, preparing recipes from all over the world, (in our case, using mainly ingredients that were naturally gluten-free). We therefore learned to create a celiac diet plan. Looking back, from the symptoms that were being exhibited, we were relieved to obtain a celiac disease diagnosis as another diagnosis could have had far worse to life-threatening consequences.
Coeliac Disease is manageable through a clean yet strict diet. That does not mean its taste free but it does reduce the convenience factor if you are used to purchasing packaged foods or ready to eat meals. Look at it as a new challenge, one that can be tackled head on and leads to a healthier lifestyle. Yes, it requires discipline, research and preparation.
Though daunting at first, if you follow the advice and steps given by the gastroenterologists, the dieticians, the local/regional/national coeliac associations and read the information in books, journals, or blogs (such as this one!), your coeliac journey will soon be adapted to a naturally gluten-free and healthy diet. We recommend registering with your local coeliac association so you receive all the latest information in your area. As a coeliac, you can still enjoy life, and most importantly, thrive!
Create Your Own Celiac Diet Plan
Our advice for those of you as parents of a newly diagnosed child or if you are afflicted yourself with coeliac disease is to embrace and tackle the challenge head on. Realise that once you or your child is on a gluten-free diet, you will begin to fairly soon reap the benefits and feel healthier, lively and more energetic. Once you take care of this, by extension, the positive impact will benefit all those who surround you like your family and friends.
Make a celiac diet plan for what you want to make for the week ahead and shop and cook accordingly.
Arm yourself with information through all the information channels possible – and above all get creative!
Please leave a comment or question on the above or any related question you may have. We will be happy get back to you!