You’ve been suffering with digestive health issues and have decided to give-up gluten - a protein found in wheat, barley and rye. You did a sweep through your cupboards and threw out anything you can find with gluten in it and you head off to the grocery store and fill the cart with ‘gluten-free’ products. Time goes by and things seem to be a little better – you continue with your gluten-free eating with maybe the odd ‘cheat’ meal or snack but more or less stick to it. Because it’s better but not 100% you decide to enlist the help of an expert and to give nutrition counselling with a Registered Dietitian a chance. You arrive to your appointment and when I ask you what you are hoping to get out of the session your first question is the one in the title of this blog post
I feel better since I stopped bread, pasta and gave up beer – are you going to tell me I have to eat it again?
I hear this question or a variation of it in my office all. the. time. My approach to answering goes something like this.
There is a tricky little auto-immune disorder known as celiac disease which is thought to affect somewhere in the ball park of 1 in 133 Canadians. There are a couple of routes that one can go about to be diagnosed with celiac but the gold standard is to have an intestinal biopsy performed by a gastroenterologist. If the biopsy shows intestinal damage – a diagnosis of celiac disease is made. Problem is, if the biopsy is performed in someone who has not been eating gluten (ie/ you if you've been off gluten for months) there is a greater chance that the test comes back negative when indeed that person has celiac disease. So what’s the harm in that you ask?
If you are thought to be negative for celiac based on a biopsy that came back negative while you were eating a gluten-free diet, you might continue to eat gluten-free but chances are you won’t actually be strict gluten-free – you might have a cheat day or you might be rather strict gluten-free but could be exposed to gluten. For someone with celiac disease very, very tiny particles of gluten can do damage to the intestinal wall – we are talking ity bity crumb size amounts. So those occasional non-gluten free cheats or multiple opportunities that occur over the day for cross contamination to occur (think shared cooking appliances or restaurant sources) add up to lots of exposure to gluten that can be extremely damaging your body. For someone with celiac disease, gluten-free is not a 'sometimes' it's a 100%, all the time necessity.
So I have to go back on gluten in order to have this biopsy that proves I might need to go off gluten forever? That doesn’t sound like a good time. It’s one of those – wish we could go back in time scenarios – before going gluten free it might have been a good idea to do the work up and testing for celiac since at that time tests results would be much more likely to be conclusive as gluten was a part of your diet. But we all know we can’t go back in time – so now what?
My answer here is it really depends.
There is a form of genetic testing that can be done which can give us some information. The genetic testing is not considered diagnostic - a negative result on the genetic testing means you do not carry the genes for celiac disease and therefore will not develop celiac disease. However, a positive result which will occur for roughly 40% of people tested would indicate you have the genes and should therefore consider further testing (ie/ having a biopsy done while you have been on a gluten-containing diet) to determine if you have celiac. Why further testing? 40% of people tested will have the genes for celiac but it’s thought only 0.5-1% of the population actually have celiac - the remaining 39-ish % of people who have the genes, do not have celiac disease.
So if you went the genetic testing route and were one of the 60% of people who do not carry the genes for celiac, you could rule out a diagnosis of celiac disease without needing to go back on a gluten-containing diet and without needing an intestinal biopsy. If you are one of the 40% of people who do carry the genes for celiac than it would be a good time for a discussion about next steps to better determine if you belong to the 1% or 39% team. This could involve resuming a gluten-containing diet in order to have a diagnostic intestinal biopsy and is definitely something to talk about with the players on your health care team including your family doctor, dietitian and gastroenterologist.