There’s enough about me on this site already! I’m a Christian and I live in Liverpool with my fantastic husband and our 2 daughters. In my spare time I’m a physiotherapist and I enjoy being creative.
What is a Food Intolerance?
Although a food intolerance involves a reaction to a particular food it is different to a food allergy. Food allergy occurs when the body ‘fights’ off the allergens in food by producing IgE antibodies, resulting in immediate and classic allergy signs. If particularly severe this can become life threatening. Food intolerances are not life threatening but can make someone feel very unwell and have a significant impact on their ability to function and enjoy life.
The mechanisms for food intolerances are not completely understood but they do not involve the immune system or IgE antibodies so are collectively referred to as non-IgE mediated reactions. Food intolerances can have many causes including the lack of enzymes in the gut to break down food or reacting to the chemicals in foods such as histamines or salicylates. Symptoms can be multiple and range from gut symptoms such as bloating, abdominal pain, and diarrhea to migraines, fatigue, behavioural changes and skin reactions such as eczema. As the reactions are delayed, typically starting a few hours after eating and lasting for hours or even days, it can be difficult to pinpoint the offending food.
What symptoms distinguish food intolerances from other conditions?
Reactions are delayed, starting a few hours after ingestion and can last for hours, usually into the next day at least. Symptoms can be obvious such as abdominal pain and diarrhea or vague such as grumpiness, fatigue and rashes which can make it hard to pinpoint mild reactions from general childhood complaints. There are no definitive diagnostic tests for intolerances and the only way to accurately identify a food intolerance is through an elimination and reintroduction diet. This makes diagnosis slow and often frustrating.
Tell us about your road to diagnosis
Our eldest had severe colic symptoms from the day she was born and was diagnosed with cow’s milk protein and soya intolerance at 9 weeks old. When we weaned her at 6 months she reacted to pretty much everything – apple, pear, carrots, wheat, tomato, to name a few. We were being seen by a paediatric dietician and were referred to a paediatric allergy clinic where she tested negative to all skin prick tests meaning the reactions were not due to IgE mediated allergies. We spent the next few frustrating years being passed between allergy and gastro departments until we worked out ourselves that fructose, a naturally occurring sugar in fruit and most veg, was a common denominator and we removed that from her diet as well. She become a lot happier but continued to have a bloated tummy, rashes, poor sleep and general fussiness, plus she was not growing at the rate she should be.
She had an endoscopy and colonoscopy under general anesthetic at the age of 3 which showed a mild allergic colitis but nothing else (they were checking for Eosinophilic Disorders, Congenital Sucrase Isomaltase Deficiency and Caeliac Disease) and a Fructose Hydrogen Breath Test confirmed Fructose Malabsorption a few months later.
Through a process of elimination her ‘official’ diagnosis is Multiple Food Intolerances and Fructose Malabsorption.
Our youngest was a very settled baby but developed eczema in response to cow’s milk protein from 4 weeks. When we weaned her she too reacted with horrible rashes and foul smelling diarrhea. The GP was convinced the rash was infected eczema but it got worse despite treatment and in desperation I took her off all food other than baby rice and it all cleared up within 48 hours. She too was seen by the allergy department and tested negative to all skin prick testing. With the support of a dietician we increased her diet to include white rice, soya formula, meat, eggs and some fish but she reacted to all other food until she was 2. At 1 and a half she also had an endoscopy and colonoscopy under general anesthetic, which showed an allergic colitis.
Her official diagnosis is Multiple Food Intolerances.
How are your children’s food intolerances managed?
We know what our girls can and cannot eat through keeping detailed food diaries and we try to increase their food choices through what seems like endless food challenges, with the support and guidance of a dietician. They have recently been started on an oral drug called Sodium Chromoglicate (trade name Nalcrom) which is a mast cell stabilizer and according to our gastro doctor has been found to “dramatically increase food options in 60-70% of children with multiple food intolerances”. In addition they take a probiotic called Bio-Kult, which was prescribed by the gastro team to try and address their abdominal distension.
What would you like to say to a parent searching for a diagnosis?
Keep a food diary! It makes it so much easier to keep track of reactions and being able to refer back is invaluable. I’ve tried to keep track in my head many times but it all becomes a lot clearer if you write it down, which means you identify the food culprits a lot quicker. Also, simplify your child’s diet to include very few, if any, processed foods as it is impossible to keep track of all the ingredients of all the foods otherwise. If a food includes more than 5 ingredients then don’t buy it and try to stick to homemade if possible.
Take photos of all reactions and take them with you to clinic appointments. We found that once it was established that our girls didn’t have allergies some doctors became dismissive. Once I started showing them photos of reactions we were taken a lot more seriously and we got the support we needed.
You need to find a good dietician and gastro team who can support and guide you. If you’re not convinced by the team at your local hospital then look further afield.
Can you suggest some useful links and resources?
For general information about intolerances (and allergies)
The following Facebook groups for support plus information about sourcing safe foods
- CAN – for children with food allergies and issues
- Allergy Buddies Group
- Allergy UK. Available at <http://www.allergyuk.org/home/home>. [Accessed November 2014]