I spent this weekend working at the Allergy and Free From Show in Liverpool as part of my role as a dietitian working for Dr Schär (Glutafin and DS-Gluten Free). Working for a gluten-free company as a dietitian, I tend to not write many gluten-related blogs in order to avoid any perceived conflicts of interest. However, I wanted to try do my part to raise awareness about coeliac disease and the diagnostic process as a result of what I have heard in the past 2 days.
I have been absolutely shocked this weekend by the number of people who I spoke with this weekend who told me how they had self diagnosed themselves or how their doctor wouldn’t test them for coeliac disease, instead telling them to go gluten free and see how that goes, or to cut everything out of their diet and then see how it goes when they bring different foods back in! Honestly. If I had a pound for every person that said something along those lines to me in the past two days my wallet would be absolutely bulging right now!
How is coeliac disease diagnosed?
If someone suspects they have coeliac disease due to their symptoms, or has associated conditions such as thyroid problems, type 1 diabetes or close family members with coeliac disease they should first get an antibody blood test while gluten is still being eaten regularly. If the results are positive from that test, the second stage is to get a biopsy looking for damage to the gut which is what confirms a diagnosis of coeliac disease.
In the UK guidelines have recently changed for children where in certain cases they may not necessarily conduct a biopsy if the blood results are extremely high and they have specific genes. Genetic testing can be used to exclude coeliac disease because if the genes HLA DQ2/8 are NOT present then it is 99.9% sure that someone definitely doesn’t have coeliac disease. It can’t be used to diagnose coeliac disease because roughly 40% of the general healthy population can also can have these genes.
Why you need to be eating gluten to get tested for coeliac disease
The tests used to diagnose coeliac disease rely upon the fact that an individual is eating gluten (found in wheat, barley and rye) regularly during their diet before taking the test. Someone who has coeliac disease and is eating gluten will produce antibodies in their blood in response to that. Take gluten out of the diet and those antibodies disappear and may not be found if a blood test is taken which can result in a false-negative result. The same thing occurs with the biopsy as the gut lining will heal itself upon going gluten-free.
At present in the UK it is recommended that people are eating gluten in most meals every day for at least 6 weeks before getting the blood test and biopsy. This advice may differ in other countries. As more research is done in this area this recommendation may change and become a shorter period of time if evidence shows antibodies are produced in adequate levels before then.
What if your doctor isn’t supportive to get tested?
Unfortunately, as I discovered even more so this weekend, there are many doctors who are not supportive in helping people get tested for coeliac disease. It may be worth reminding them of the National Institute of Clinical Excellence guidelines for Coeliac disease (NICE 86) which are written based on all the existing evidence for diagnosis and treatment coeliac disease and why this diagnostic process is currently considered the gold standard. As research evolves these guidelines can change in the future.
If that doesn’t help, it may be worth trying to see a different doctor or contacting Coeliac UK and asking them for guidance as they may be aware of others in your area experiencing the same difficulties. If they aren’t made aware of it, they can’t do anything to help.
Why is it so important to be diagnosed?
A complete diagnosis means that you are provided access to the full medical support, care and follow up that you require. People with coeliac disease have higher requirements for certain nutrients and have greater risks of long-term health effects like osteoporosis which is why part of follow up should include scans looking at bone mass. Even if you were to follow a gluten-free diet, without a diagnosis you can be unaware of any deficiencies present if you don’t receive adequate follow up from your GP, dietitian and healthcare professionals. Coeliac UK explain why a full medical diagnosis is important can be read here.
If not coeliac disease, then what?
The symptoms of coeliac disease can be quite vague for some, but not all people and overlap with other conditions including irritable bowel syndrome (IBS) or non-coeliac gluten sensitivity. In the case of IBS, approximately 70% of people find that their symptoms improve on a low-FODMAP diet. FODMAP stands for fermentable, oligo-saccharides, di-saccharides, mono-saccharides and Polyols which are fancy words for types of carbohydrates that aren’t absorbed well in the gut by some people. They include lactose, fructose, fructans (wheat) and can be found in a wide variety of foods including beans, milk, wheat and certain fruits and vegetables. A person who responds to a low FODMAP diet may find that their symptoms improve on a gluten-free diet due to the removal of fructans found in wheat and continue excluding foods that aren’t necessarily problematic for them. There is lots of information on the internet about FODMAPs which isn’t always accurate and up-to-date. If you want to see whether FODMAPS are problematic for you, you should always see a registered dietitian who has been trained in FODMAPS. Kings College in London train dietitians in the UK and have a list of all the dietitians they have trained in the UK, where they are located and how to get referred to them here.
What tests shouldn’t be used to test for coeliac disease?
Unfortunately there are many companies out there these days trying to make money off people by ‘diagnosing’ their allergies, intolerances and even coeliac disease. Please, save your money and don’t believe them! You may end up restricting your diet unnecessarily again putting yourself at risk of nutritional deficiencies. These include (but are not limited to) hair analysis, IgG gliadin antibody tests, leukocytotoxic tests and vega tests. These tests do not diagnose coeliac disease (and often other things they claim to diagnose) and are poorly regarded by experts within the allergy and intolerance field because of the lack of evidence behind their usage.
As an example, a number of years ago while I was a student I conducted a research project comparing the reliability and validity of a skin patch test against the gold standard skin prick test for allergies to casein (milk) and gluten (wheat) in children. I found that the test was only accurate and reliable 50% of the time! Research like this is what is used to justify what tests are used by healthcare professionals and the healthcare systems. If it’s recommended or on the list – its usually because it doesn’t work.
Until next time.
- Coeliac UK
- National Institute of Clinical Excellence (NICE) Guideline 86: Coeliac Disease
- Kings College London FODMAPS
Disclaimer: I am employed as a Dietitian by Dr Schär and did not receive any personal benefit from writing this blog which expresses my own personal views.