For quite a while I have been interested in getting intolerance tests done for Ben and myself. When YorkTest Laboratories offered for me to try the tests out and share my experiences on my blog I thought it would be a great opportunity.
There are many reasons why I was interested in intolerance tests which I will go into further below. If you have often considered this too then maybe our experiences will help you decide.
Why did I want to do the tests?
For some time now I have been struggling with tiredness and constipation some days and not others and I wondered if this was down to something I am eating.
I also have a lot of skin reactions and I am regularly having some kind of reactions there too though this is more likely to be down to something external like bath products and such I thought it would be worth ruling it out.
For Ben, I had often considered intolerance tests as although Ben is very able in some respects he still does have many difficulties due to his autism and expressing pain is one of those.
Ben has always been a sensitive kind of child with eczema, a fruit allergy/intolerance when he was younger (discovered by elimination diet) that he has grown out of, and generally often sneezes and itchy with sensitive skin.
There have been links suggested in the past with intolerances and autism with varying reports of accuracy. This is another reason I considered it.
Despite us both having these issues I fully expected us to have normal results and that it would just put my mind at rest. After all, it is only like when you have blood tests at the doctor, usually, you hope they will come back clear and all is fine don’t you? You never really plan for anything else.
How does intolerance testing work?
Each participant is sent out a pack similar to that above which contains all you need. Don’t panic if you don’t like blood. Ben doesn’t, in fact, Ben hates it to the point he has to be sedated for blood tests now after screaming the hospital down and fighting for his life so many times previously!
Ben coped with it just fine though to my surprise. It is just a pinprick, similar to those diabetics who do to check their blood sugars. After you have pricked your skin you soak up a little blood using a stick and that’s it pop it in a little tube and write your details on it.
The kit comes with a return envelope and you just pop everything back in the envelope sign a form and send it off. The packs include plaster and the junior test includes a sticker to say they have been brave. All kids love a sticker don’t they?
Getting My Results
The results were really quick and arrived by post around a week or so after they were sent off which I thought was great. My results were pretty straightforward and showed me to have a borderline intolerance to yeast.
This fits well with what I thought as I felt that when I eat certain foods like bread, doughnuts and such I am struggling more to go to the toilet and am much sleepier. I researched the foods that contain yeast and looked at the information I had received with my results and was surprised at how many foods I should try to avoid.
I have not yet had my phone consultation which is part of the testing but I feel confident with what I have found out. I have made the decision to just try to cut down on those things and see where that leads.
Getting Ben’s Results
As I said near the beginning I expected our results not to show anything significant so was not overly concerned when the envelope with the results arrived. In fact, it arrived as I was typing a blog post so I didn’t even open it for an hour or so I was that unconcerned.
When I did however I had a surprise. Ben’s results showed an intolerance rather than a borderline one like mine, it showed more than one, and there was a long list that was quite daunting.
The results letter shows everything that is tested for intolerances in three sections. The items with no reaction are dotted in the area coloured green. The items with a borderline reaction are dotted in the area coloured yellow.
However, the items where a reaction has been shown are dotted in the area coloured red. So when I saw Ben’s results, pictured below you can imagine the shock I got.
My Feelings of Ben’s Results
Where do I start? Of course, my first thought was to panic, anyone would, wouldn’t they? Then my next thought was where do I start with this? Ben had shown intolerance reactions to cow’s milk, egg white, peanut, wheat, beef, cashew, coconut, egg yolk, gluten (gliadin), hazelnut, lentils, and soya bean.
His borderline reactions were to chilli pepper, lamb, yeast and almond. What a list of foods that is. When you look at the ingredients in so many foods they contain one of those, many items in free from ranges use coconut or soya to replace other ingredients.
There are so few foods with any of those in I wondered if he would end up just eating vegetables, rice, chicken, pork, fish and potatoes. I booked our phone consultation about his results with the nutritionist at York Test Laboratories.
In the meantime, I decided that I couldn’t even begin to know where to start with cutting these things out. Not only that but how would I know if there was any effect as I wasn’t sure if he even had symptoms?
I decided to buy some items from the free-from area of the local supermarket and see what I could find that Ben enjoys. Then knowing what I could replace and what was a no-go I could decide on a plan of action.
I have found that there are very few choices in the way of milk/yoghurt/cheese for Ben given the intolerances. Breakfast cereal is limited pretty much to oats but otherwise, there seems enough available. Finding things Ben likes may be another matter.
The Nutritional Therapist Consultation
I must say I was a bit unsure how the consultation would go. Would they try to convince me that I needed to cut out everything on that list now? Would they understand the difficulties that I would have because of Ben’s autism?
What foods should I watch out for? I was generally rather unsure how the phone call would go and whether the 30 minutes allowed would be enough.
The call was received perfectly on time and the lady I spoke to called Sandra was lovely. She understood how overwhelming these results were for me and discussed Ben and his difficulties and how that could impact things.
We decided given the long list the best way forward was to approach the top two items first as they had shown the strongest reaction. These are wheat and cow’s milk. Whilst the other items should be reduced if possible she understood that cutting all of these out would be extremely difficult.
We discussed Ben’s favourite foods and the meals I thought would be the hardest. I was offered suggestions of alternatives for those key ingredients and also which brands tend to be nicer etc.
I was advised of hidden ingredients you wouldn’t necessarily think of like as he showed a reaction to beef including gelatine in sweets etc. Other advice I was given included which non-dairy products could also offer calcium with the milk-type products mostly being out for Ben if we were to completely cut out these foods.
My feelings going forward
I have spoken to a GP at our surgery though as she doesn’t know Ben I am also going to discuss it with his paediatrician who is more aware of Ben’s issues. The general opinion from the GP and medical professionals, in general, is that these tests are not very helpful unless a particular trigger food is identified and a severe reaction is found.
I guess they are right in that if there is not a severe reaction and a simple elimination diet is suitable then really why do they need to do any more? It makes sense really as if any issues are resolved by taking that item out of the diet and the person still gets all the necessary nutrients what really needs to be done?
Allergies causing anaphylactic reactions, of course, are completely different and would be investigated fully but where there appear to be no symptoms and Ben is fit and well I agree there is not much they can do.
I am going to continue to try Ben with different free-from foods and where I can cut down on these items I will see how that goes. It is not practical to cut them all out but if I can reduce them where possible then I will. For example, I am buying Ben breakfast cereals that have a lower wheat content and avoiding Weetabix etc.
This is a bit of a learning curve for us so I will be writing another post in the coming weeks sharing recipes I have found that we can all enjoy, free from items I have bought and Ben likes and how we are getting on generally with the idea!
Please note we were given the tests to try out and share with you however all results and experiences are a true account of what happened and how I felt.
An update a few years on
So, we had no success at all in eliminating things and there was nothing that made any changes to his health. The paediatrician very much told us that tests like this are nonsense and not to worry or make any changes.
Ben has had some serious anaphylaxis life-threatening reactions to some foods since this test was done and I feel it important to share that none of these was to the items highlighted by these tests!
The ASA and York laboratories’ food intolerance tests
I have recently become aware that the ASA (Advertising standards agency) has reported that these tests were advertised and sold as being useful for diagnosing conditions they couldn’t prove were the case and the company no longer offers these services. Read more about what ASA said here.
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