If you think you or your child may have Coeliac Disease the most important thing to do is to continue eating gluten. You must be eating gluten to get a positive diagnosis via the biopsy of the bowel. The biopsy of the bowel is the only way to get a positive diagnosis. Don’t let any doctor convince you otherwise.
The first step in establishing if you have Coeliac Disease is to get screened and have blood tests done to determine your gluten antibody levels. This test alone will not confirm your diagnosis as it is are only a screening method.
Elevated levels can indicate that you have a problem with gluten but does not confirm Coeliac Disease as it may also be a case of gluten intolerance both of which have similar outward symptoms. It is also important to note that serology results are not always accurate in children and can lead to false negatives and false positives.
The Coeliac Society states:
“Importantly, a diagnosis of coeliac disease SHOULD NOT be made on the basis of a blood test alone. A positive blood test always needs to be followed by a small bowel biopsy to confirm the diagnosis.”
You can also get a gene test done to find out if you carry either the HLA DQ8 or HLA DQ2 which over 99% of those with Coeliac Disease have. A positive result for the gene test means that like many of the population you are a carrier however it does not mean that you have coeliac disease as only 1 in 30 people who carry either gene will develope the disease. A gene test is the best at ruling out Coeliac Disease as if you do not carry either gene you have only a minuscule chance of ever having it. When I say minuscule I mean it as well there are only a handful of documented cases of this nature.
So what happens if you are a carrier of the gene and have elevated gluten antibodies? Then you get your doctor to refer you to a gastroenterologist for your biopsy. Many people have reported that they have been told to commence a gluten free diet and I can not say it enough DO NOT go gluten free until after you have your biopsy. You see once you go gluten free your insides will be able to heal and there could be no sign that you ever had that damage resulting in a false negative diagnosis. It is important to note that once you go gluten free and then decide to undertake a gluten challenge it will be much harder to stick to it. It has been reported that symptoms will be more prevalent and harder to cope with in those that have eliminated gluten and attempted to return it. My favourite analogy is for those who go vegetarian or vegan and then attempt to reintroduce meat, their body has trouble digesting it and causes them symptoms.
It is always good to take the time leading up to your procedure to say goodbye to some of the foods you may miss. There is no gluten free alternative for Malteezers, many debate about there not being a good alternative for vegemite or Milo so eat those while you have the chance.
In some people the specialist will tell them on the day that there was visible damage, in other cases the damage won’t be visible; it is important to remember that no two cases will be the same and you should wait until your results are in before jumping to conclusions. When you receive the results you will know for sure whether or not you have Coeliac Disease. If you have no damage to your villi but still have symptoms and elevated gluten antibodies then you may be gluten intolerant and this is where the big difference between the two lies.
If you get a positive diagnosis you should begin a strict gluten free diet. It is important to remember that even a microscopic crumb via cross contamination can cause us internal damage regardless of outward symptoms. To keep track of how you are going, there are ongoing requirements to take care of, firstly you should have another serology test at 6 months and then yearly to ensure that you are not being continuing to consume gluten.
As Coeliac Disease like all auto-immune disorders has other associated conditions you will need to ensure that these are checked on the recommended basis.
I hope that you have found this article helpful. For more information please visit the Coeliac Society of Australia. Remember don’t go gluten free until you’ve undergone your biopsy and until next time;
Ashlee; The Aussie Coeliac.