Parents of a Celiac Child

Children as young as six months can suffer, and be diagnosed with celiac disease. If your child has just been diagnosed with celiac disease, you may ask yourself the question 'why me or why my child?'  The same question would be asked if your child was diagnosed with any serious illness.

At this point, you could focus on the negatives, but lets focus on the positives. This disease is manageable and will quickly restore your child back to good health if it is managed properly. Yes, there will have to be some changes, learning (especially with the shopping, etc) some tears, but it will be all OK. Your son or daughter will be able to grow up and live a very happy, active life, marry and have children – what more could you ask!!

The symptoms of celiac disease in children often becomes apparent 3-5 months after eating solid food that contains gluten. Generally solid food is introduced to the diet at about 5-6 months of age – up until then they thrive only on breast milk or baby formula and your baby will be a happy and healthy baby.

The symptoms that your child may show will be varied and will differ between different children. Your child may gradually become irritable or listless and/or develop a large abdomen. The child's stools may change in consistency, color and shape and they may suffer from diarrhea. Your child may vomit from time to time after eating certain foods. Some children may lose weight or fail to gain weight.

Throughout this article I am going to give you an account from one parent who has four children who are living with celiac disease, but the parents themselves are not celiacs.

My oldest, Dean, was diagnosed when he was 14 months old after one hospital could not work out what was wrong and he was admitted to a children's hospital for a week before they could diagnose what was wrong. He was a very sick baby but improved quickly. My second son, Ronald, was diagnosed on a routine blood test. He was never sick. My 3rd, Mindy, started losing weight so I pushed for the test to be done for her and her identical twin sister Ada. Mindy was positive and Ada is currently negative for celiac disease but we have been told she has an 80% chance of having it. My problem was with Mindy because it was over the holiday period when she had the positive blood test and everything shut down so we had to wait two months till she could have the biopsy done which was frustrating as she was only 18 months and was getting so sick from it.

With the twins being 2 year old identical twins, with one having celiac and the other not yet. They both are fed everything gluten free so Mindy cannot take food from her sister or people won't mistakenly give Mindy something thinking it is Ada. I do give Ada normal cereal so she has a small amount of gluten in her diet. If Ada starts to be effected by celiac disease I can then jump on it to have her diagnosed.

With a celiac child, the family then becomes a celiac family. It is not possible to lay down a set of rules for dealing with all situations which may arise, but here are some suggestions:

1. Cook all meals at home for the family as gluten free – this will avoid the need for separate dishes of food, and will avoid making the child feel 'different ' in their own home.
2. Do not make the child feel sorry for themselves. Discuss that other children have illnesses that they have to manage and that their's is no different and is easily managed.
3. Do not become obsesses with their motions or stomach. Your child will get many minor illnesses through their growing years and this should not be blamed on the celiac disease.
4. Accept invitations to dinner and other social occasions – take gluten free bread or cakes with you and your child will regard this as normal procedure for going out.
5. Encourage other children to come to your home for meals and provide gluten free food for everybody on these occasions.
6. Treat your child as a normal healthy child – they are not 'sick' – they just have a special dietary need.

 

The Pre-School child

As your child moves out of the infant stage and gets their own personality, mobility and friends then this creates more problems and a very watchful eye.

A few problems that I have had was Dean's kindy giving him cake out of them not being careful enough; his school doesn't cater gluten free so tuckshop is not something the kids can have a lot of unless they have a salad on offer. Dean's year 7 camp - he wasn't fed lunch on his last day so had to go all day without eating because his teachers had forgotten about him not being able to eat normal lunch.

When Dean was younger he would sneak food he should not eat into his room. Ronald often feels sorry for himself as he knows what "real" food tastes like and misses it. You have to watch a 2 year old like a hawk as they will eat anything out of lack of understanding it will make them sick.

School Years

By the time your child is off to primary school, they should know not to accept cakes, biscuits or bread from other people. It may be helpful to have a “prescription” or letter from the child's doctor regarding the diagnosis along with a brief description of the illness and the need for a strict gluten-free diet. Prior to commencing/moving to a new school it may be advisable to have a meeting with the Principal or Class teacher and discuss your child's dietary requirements. As a parent, it would be useful if you can get involved within the school's canteen committee/Parents and Friends committee to encourage them to cater for children with special dietary needs.

There is no reason why a celiac child should not take part in all school activities and camps. The child should know and understand what they can and cannot eat and the teachers in charge should know about the diet and your child's requirements.

The place where our children spend most of their time aside from in the home is at school so we have to have gluten-free food readily available for them to eat.

One of the most difficult item to pack for a gluten free lunch is a sandwich. This is difficult because most gluten free bread is not that suitable for a fresh sandwich – gluten free bread toasted is always recommended. There is some commercial brands of gluten free readily available that is fresher and lighter than others and make good sandwiches. You may have to put it into the freezer in packs of two or four slices to keep it fresh over a few days.

Lunches


It is recommended to freeze a small bottle of water or fruit popper and place this in the lunch box container. This will keep the contents cool and the drink will be nice and cold to drink at lunch time. Some suggestions for making up a yummy gluten free lunch box are:

  • corn thins/corn
  • cruskits:
  • sushi;
  • quiche (often called egg and bacon pies);
  • yoghurt;
  • small tins of tuna/salmon;
  • mixed salad (for older children);
  • left over meals (especially if the child has access to a microwave);
  • vegetable sticks – carrot, celery, broccoli/cauliflower florets with hummus dip;
  • celery with peanut butter inside (cottage cheese if your school id nut free);
  • cold gluten free pizzas;
  • cold chicken drumsticks;
  • pikelets (gluten free) with butter and jam;
  • cheese sticks, cheese slices, small baby bel cheeses and crackers;
  • hard boiled eggs (peeled and wrapped in plastic wrap);
  • nuts or trail mix;
  • plain popcorn;
  • spaghetti (gluten free) or baked beans in a heated thermos;
  • gluten free snack or muesli bars;
  • fruit – (make it easy and peel and cut an orange);
  • and dried fruit.


For school lunches I have available gluten free sandwiches, muffins, gluten free muesli bars, fruit, yoghurt, cheese, dried fruit that they can pack for lunch.

Eating Out


Do not avoid eating out; obtaining a gluten free meal in most restaurants and fast food restaurants is not that difficult. Teaching your child how to make wise choices will help them to be self-sufficient now and later on in life. Look for restaurants that are gluten-free friendly. Also make sure you go to fast food outlets that children do enjoy – i.e. MacDonalds. They will be able to choose from Hash Browns, a salad, chips/french fries, fruit bags and ice cream. Get to know your local take-away (take-out) restaurants and experiment with different food choices. Instead of looking at hamburgers and saying ”I can not eat them” - look at having the hamburger without the bun. Maybe you can put the burger contents on a plate or take your own gluten free bread. (You should always check that the ingredients are also gluten free.)


Inviting friends/relatives/children over to your home.


Having family and friends to visit is always great fun. Follow the rule mentioned previously and have all the food gluten-free. Many times, your visitors will not even notice the difference. You can have 'normal' bread and/or cakes for your friends and visitors as long as you have an alternative option for your child. If you make your own gluten-free bread and it is nice and fresh, then all the visitors will want to eat it.
As for children coming over here, they eat what my children eat for most of the time as we all mainly eat gluten free. I do have normal cereal as one of my children has not been diagnosed yet and I want to keep some gluten in her and we have normal bread here for us.
The gluten free diet is for Life – the reason for banning gluten for life is that every small particle of gluten may do some damage even though your child may not show it at the time.

If you life by the rule – one molecule of gliadin (gluten) can be as bad as ten thousand. If you set up good rules and guidelines now for your child to follow you will help them to live a very happy prolonged life. The patient who goes on and off the diet or who cheats here and there, is the patient that runs the potential risk of a a severe relapse, the addition of other immune-related conditions, or new or related health problems later in life.


Birthday Parties


Follow the links for hosting a child's birthday party and for your child being invited to a friend's birthday party.