Written by Registered Dietitian Natalie Yerlett
Does coeliac disease run in your family and are you concerned it has been passed down to your child? Perhaps your child is struggling with symptoms such as bloating, wind, tummy pain etc. and you think it could be coeliac.
If yes, then please continue reading as I give you my top tips to ensure you get the proper tests and accurate results!
Top Tips from a Coealic Disease Specialist Dietitian
Firstly, ensure you keep gluten in the diet
This is the most important thing to do as all blood tests and biopsy tests for coeliac disease will return a negative result if there is no gluten in the diet. There is exciting research that hopefully will improve this in the future, but your child must be eating at least one meal (two is ideal) containing gluten every day for at least six weeks or longer.
2) Get the right tests
A blood test is the first line for checking for coeliac disease. Ask your GP for the total IgA and the IgA tTG (tissue transglutaminase) blood test.
3) What do the results mean?
If the tTG blood test is positive AND over 10 times the upper limit of normal, a second blood test to check endomysial antibodies (EMA) may be offered. If this second test is also positive this is enough to diagnose the disease without a biopsy.
Let us interpret the results….
If the tTG is positive but NOT 10 times the upper limit of normal, then you should have a referral to gastroenterology and a biopsy may be needed. A biopsy looks at the lining of the intestine directly to see if gluten is causing damage. Remember to keep gluten in the diet until the biopsy is done too otherwise healing may have started in the intestine already and give a false negative diagnosis.
4) What if my total IgA is very low?
Some healthy people in the population may have IgA deficiency which means their immune system does not produce enough of the IgA immunoglobulin and it will show below the normal range on the blood test. This can often be unknown to the individual and there may be no symptoms or long-term concerns.
If the total IgA is below the normal range this means the IgA tTG will also be negative, however, this doesn’t mean coeliac disease isn’t present.
Most cases of IgA deficiency found on testing should be referred to a gastroenterologist for a possible biopsy and your child may be offered further bloods tests for antibodies to gluten that don’t involve IgA; IgG tTG, IgG EMA or DGP (deaminated gliadin peptide) antibodies.
If this sounds complicated, can we just skip all these tests and have a genetic test done?
Coeliac disease is carried down through generations within a family and there is about a 1: 10 chance of a close family member having coeliac disease if someone in the family does.
Tests do exist to look for the genes that are commonly seen in people with the disease; these are either HLA DQ 2.5/2.2 or HLA DQ8.
These tests do form part of the diagnostic process for children with coeliac disease because a positive gene does not always mean coeliac disease is present now or will definitely present later on. Many people with these genes never develop coeliac disease. However, very few people with coeliac disease do not have these genes, so it is good at predicting that coeliac disease is not present.
if you think your child or yourself have coeliac disease then please get it checked out as soon as possible. If you have any questions please comment below and if you enjoyed this blog please like or share it.
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Husby, Steffen et al. “European Society Paediatric Gastroenterology, Hepatology and Nutrition Guidelines for Diagnosing Coeliac Disease 2020.” Journal of pediatric gastroenterology and nutrition vol. 70,1 (2020): 141-156.
National Institute for Health and Care Excellence. Coeliac disease: recognition, assessment and management (clinical guideline NG20) 2015 [Available from: https://www.nice.org.uk/guidance/ng20].