Tips and Information
Celiac Disease is a digestive condition triggered by consumption of the protein gluten, which is found in certain foods including wheat, barley and rye. Also called celiac sprue, gluten intolerance and nontropical sprue.
Additional Links for Celiac Disease:
Summer was born bang on her due date on August 2001. She was perfectly fine and after having a first daughter with reflux it was a blessed relief that Summer showed no symptoms and that we could enjoy her without the constant “mopping up”!
Summer is a lively and energetic little girl who hardly needs any sleep and is constantly on the go – so much so that we initially had concerns that she may be hyperactive.
This all changed early in 2005. She had just been for her MMR pre-school booster and about 2 weeks after she developed diarrhoea. After a week we took her back to the Drs who told us that it was a side affect of the MMR and nothing to worry about.
After 2 more weeks we were told that she had a “tummy upset” and as she wasn’t being sick we shouldn’t worry.
This continued with almost weekly visits to the doctor where I became labelled with the “neurotic mother” title!
Obviously we were very concerned and wanted tests to be performed; they took stool samples which showed no infection. By now Summer was losing weight, had awful mouth ulcers, a very bloated swollen tummy and absolutely no energy whatsoever! She slept all the time and just wanted to be cuddled.
After one particularly harrowing night I took her straight to the Emergency Department and told them to “do something” they finally agreed to take some blood tests and I could hear them talking amongst themselves using words like “bowel cancer”!
By this point a family friend had suggested celiacs disease to us – something which he suffered from and recognised all the symptoms in Summer. We asked the doctors about this and they told us that it was definitely NOT celiacs disease – I insisted that they did the blood test just to make sure.
By now Summer was in hospital on a drip in isolation because of the diarrhoea. They were now talking about food allergies but as I told them – she hadn’t eaten anything properly for days, they waited for the blood test results.
Everything came back clear and when questioned about the celiac screening they admitted that they had lost the results for that test!!! They re-did the test and it came back positive! By then we were so relieved it was not something more serious we were just grateful that we could change her diet and she could get back to being healthy again! But no! The doctors wanted to perform a biopsy before they changed her diet so we had to wait whilst she had a general anaesthetic to see what her stomach lining looked like.
The biopsy came back showing complete atrophy of the villii – basically she had no stomach lining left and was totally malnourished. After further allergy testing it became obvious that because of lack of villi she had become intolerant to dairy foods as well.
So here we were with a 4 year old child who could eat no wheat, gluten or dairy products – I mean, what do you
feed her? Thankfully Summer loves tuna and vegetables and fruit and baked potatoes so we got by.
Once we got out of the hospital we had to instigate her new diet and it took some time for her to learn to trust us again. For the past 6 months we had been trying to feed her food that made her tummy hurt and now we had to make her see that this food would make her tummy better! It was a slow process but we got there.
Once we had changed her diet the recovery was instantaneous! Her energy levels increased, she was able to go back to school, her mouth ulcers cleared up and her diarrhoea went away.
Now she is a healthy (just) 5 year old with more energy than is decent! She doesn’t eat anything without checking its contents with us and has readily accepted that she can’t have chocolate and ice-cream like her friends. She has started growing again and is gradually putting on weight.
Summer will never be allowed to eat wheat or gluten again and thankfully there are many more products available today than there has ever been to accommodate this. We hope that sometime in the future she will bee able to tolerate dairy again. In the meantime she will continue to take her calcium and vitamin supplements.
Celiac disease is easy to manage once you get the diagnosis and the recovery is fast. I just wish that someone had listened to us sooner so that we could have had our diagnosis a lot earlier.
NOTE: The information on this page is not exhaustive and complete accuracy is not guaranteed. Please consult your doctor with any questions you may have regarding the treatment of your child.