Hi I’m Delicious Alchemy’s founder, Emma Killilea. As part of our ‘Behind the Scenes’ series, I’ll be talking about my diagnosis with coeliac disease, and all the tests along the way.
My no.1 tip: Get your coeliac diagnosis!
Do you swell up, get pain or any other digestive problems after eating food with wheat or gluten in it?
Then I’m afraid it’s time you went to the doctor to get a diagnosis.
I don’t want to sound alarmist but … for the sake of your present and future health, you urgently need to know whether you have coeliac disease or whether you are suffering from an allergy or an intolerance. The three conditions are very different..
What’s the difference between coeliac, allergies and intolerances?
There are a handful of differences between the three, but to sum it up:
- Coeliac disease is a serious autoimmune condition that is triggered by gluten. If left untreated, it can cause a large range of very debilitating symptoms.
- Allergies vary in their severity from life threatening to a manageable irritation.
- Intolerances are not life threatening but can be very painful and in some cases socially embarrassing (!).
Getting your diagnosis
I had a lot of difficulty getting diagnosed and it took me years and years and this was because, not only do I have Coeliac disease, I also have a severe wheat allergy.
The ill effects of the wheat allergy meant that I had given up gluten before I took the test for Coeliac disease.
So it’s really important, when you realise that you have a problem with wheat/gluten, the first rule is:
DO NOT GIVE IT UP!
DO NOT GO ON A GLUTEN FREE DIET!
I know this sounds bonkers (and frankly it is far from ideal) but most of the current medical tests only work if you are still eating gluten. As medieval as it sounds, you need to keep yourself ill so that the medics can diagnose you.
What tests you need to expect
The starting point for your GP is usually a DNA test to see if you have the markers for coeliac disease. If are lucky then the DNA test is the only test you need and you are diagnosed.
If there is any question over the DNA test or your symptoms, for example if you have some of the genetic markers but not all, like I do, then you will be referred to a specialist consultant and you will probably have an endoscopy test, which is the gold standard for testing for coeliac disease.
Otherwise you might have a colonoscopy to see what’s causing your pain or discomfort.
In some cases you end up having both.
In advance of these procedures, the consultant should ask you whether you are on a gluten free diet. If you are on one, he should tell you that you need to start eating wheat/gluten again. The gold standard time period to eat gluten is 12 weeks and in that time you are supposed to have the equivalent of 8 pieces of toast a day.
I know that most of you are falling over in a dead faint at this idea! This is why you should get diagnosed before going on the gluten free diet.
Troubles getting my diagnosis…
If you’ve read my earlier blog about how I found out I had a wheat allergy and then Coeliac disease, you’ll know that I went on a gluten free diet years before I was diagnosed with Coeliac disease. So I went the long and difficult way around getting a diagnosis!
Because of my severe wheat allergy, I only managed 4 weeks on the ‘high gluten’ diet the first time I had a test and 10 days the second time.
The more I ate, the more acute the symptoms became. Pain, extreme fatigue, foggy head, etc.
The second time I had to give up because in addition to these symptoms, I could not breathe properly. The doctors were at a loss to explain this but I had to stop eating wheat because I was going to keel over and die. Subsequently I realise that I have wheat based exercise induced anaphylaxis.
There is mention of it here: nhs.uk/Conditions/food-allergy/Pages/Symptoms
My breathing was becoming difficult just walking down the street. I was not exercising vigourously at all! The consultant was understanding with me and even though I hadn’t stayed on the diet long enough, he went ahead with the procedure.
So to explain the procedures… the endoscopy is a camera down the throat and the colonoscopy is a camera up the other way (!).
What the camera is looking for is evidence of problems like ulceration, the villi in your stomach lying down instead of standing up, etc. and if you have given up the food that is causing your problems then the camera won’t find any problems, therefore you won’t be diagnosed.
This is what happened to me. To this day, the consultant remains unsure that I have coeliac disease because he could not see ulceration or villi problems in my gut. How could there be any? I’d given up gluten years beforehand. Therefore he has given me a discretionary diagnosis because I have many of the symptoms and I remain under his care nearly 8 years on.
Don’t give up, it’s tough but it’s worth it
Some of you are probably thinking, this all sounds awful! I’m not bothering with a diagnosis, I can manage it myself. This is a choice but my view is that it is a bad choice.
You and your doctors need to know what is wrong with you so that it can be monitored and you are given the right support to manage it.
This is particularly important if you have a serious condition like Coeliac disease or your allergy could develop into something life threatening.
For example, if you have Coeliac disease you need to be assessed for osteoporosis, anaemia and other serious, related conditions. People don’t realise this but osteoporosis can be extremely serious and can shorten your life span. People with Coeliac disease have compromised immune systems so they need other types of medical support like an annual flu jab. Many, many people with it go on to develop diabetes and/or thyroid problems, but only if you are diagnosed can your doctors monitor your health and make these important medical links as your life progresses.
It’s also important for you to know what is wrong because it will empower you with knowledge and motivation. You need some serious motivation to manage your diet in the face of constant temptation in the bakery aisle and the coffee shop! So although it’s unpleasant, do yourself the lifelong favour of getting a diagnosis to improve your health and therefore your life.
You’re not alone
Don’t forget, there are loads of us out there with wheat and gluten problems.
You are not on your own and there is lots of support online and through the various organisations I mention in my first blog. Come and join us through social media and local meetings and get to know some like minded souls, facing all the same issues.
I hope you’ve found this information useful, my next blog will give you some tips and advice on how to prepare for endoscopies and colonoscopies.