Whether you’re newly diagnosed or have been diagnosed for a long time, there will always be questions that we will either want to ask or have had others ask of us. This page focuses on some of those. If you have a question you’d like to add please feel free to email me, leave a comment below or on one of our social media platforms.
I have broken the Frequently asked questions into three categories for ease of use and have added links to extended answers of my own or others where necessary to keep this answers short enough for a quick look but in depth enough to give a decent answer.
Questions regarding Coeliac disease in a general sense. You can read all about the disease here if you want to read the long version; otherwise you can scroll through and find just the bits and pieces you need below.
- What can you eat?
The Rant: I honestly can’t remember the amount of times I have been asked this question. As long as there is no tone to the way you say it then it can be a perfectly reasonable thing to ask. However if you aren’t asking out of concern or interest and instead are being condescending (which has happened often to me) I’ll tell you where to go.
The Answer: There are in fact lots of things that a Coeliac can eat. You can view the list of what we can’t eat in the question below which will be a shorter list. The idea that a Coeliac can’t eat almost anything comes from the fact that those four products we can’t eat are in a lot of processed foods. If you want to cater to a Coeliac, some fresh fruit and veggies will do fine, most of us will appreciate the thought – just make sure you cut all the items on a thoroughly cleaned chopping board, with a thoroughly cleaned knife and place them on a clean plate away from any other food items. It also doesn’t hurt to prepare and cover / put in the fridge all the non-gluten containing items before doing any baking as flour particles can remain airborne for up to 48 hours. You can read more about that here.
- What can’t you eat?
The Answer: Wheat, Barley and Rye are the three main things that a Coeliac is unable to eat. In addition to that are Oats. Oats were originally included due to shared harvesting periods and are often contaminated because they grow next to gluten containing grains. However even if the oats are cross contact free not everyone with Coeliac disease will be able to tolerate oats, you can read more in my ‘are you the one in five?‘ article.
Of course we are also unable to tolerate any items prepared with Wheat, Barley, Rye and Oats and some of their derivatives.
Depending on whether or not the Coeliac in question also has an allergy to Wheat; glucose syrup from wheat can be considered safe.
You can find many apps at the app stores that will provide you in depth knowledge about what products are and are not safe for coeliac consumption.
- What is Gluten?
Gluten (derived from the Latin word meaning ‘glue’) is a protein composite; containing gliadin (the protein that gives bread the ability to rise) and glutenin (responsible for the strength and elasticity in dough), joined with starch and is contained within certain grains. Gluten is considered a source of protein all around the world and is used as an additive in many processed foods to increase protein levels.
- Why is it that you are unable to eat gluten?
The Answer: When a person with Coeliac disease ingests the proteins containing gluten it triggers an autoimmune response in which the body begins to attack and destroy its own small intestine lining. This can lead to many problems over a long period of time including but not limited to mal-absorption issues.
- Eating gluten when you’re a Coeliac can’t kill you, Can it?
Coeliac disease in itself may not be fatal; however as it is an autoimmune disease, if a Coeliac continues to eat gluten and triggers the attack response from the immune system the body will continually try to attack and remove the gluten and continue to damage the body and other internal processes.
Prolonged ingestion of gluten if you are a Coeliac can lead to many other conditions that have the potential to be fatal. These conditions include but are not limited to:
Gastrointestinal Cancer; consistent damage to the cellular structure in your small intestine can lead to cancer. Amongst the types of gastrointestinal cancer is EATL; which is often known to end with death.
Dehydration; This one probably seems a little out of place; however in extreme cases the damage to the intestinal lining may be so severe that it is no longer able to serve its purpose of holding water.
Obesity; Contrary to popular belief Coeliac patients are usually overweight rather than underweight. Obesity while not Coeliac specific can lead to health complications.
Immunodeficiency: People living with Coeliac disease generally have a weakened immune system; this means that even the more common illnesses are unable to be fought off by the body and could end up being fatal.
Malnutrition; I think this one explains itself. If the Villi in your intestine are damaged they are unable to absorb the nutrients your body needs to keep your body and organs functioning. This could lead to organ failure and death.
- How can you tell if you are a Coeliac or have Non-Coeliac Gluten Intolerance?
The Answer: There are a range of symptoms you may experience if you have Coeliac disease or NCGI; you can find a list of the common symptoms here. However there are a small amount of Coeliac disease patients who are asymptomatic and will show no visible or outward signs despite the internal damage occurring. If you are concerned or have a family member who has recently been diagnosed as a Coeliac or with NCGI then you should get tested by your local GP. There is a blood test that can be performed firstly and if the results of that lean towards the positive side then they will book you in for the internal biopsy.
- Is Coeliac Disease Generic?
The Answer: Yes; as the Coeliac Society website states “You must be born with the genetic predisposition to develop Coeliac disease” Although not all relatives of a family member with Coeliac will necessarily have the disease. According to research 30% roughly of the population carry one or both of the genes associated with Coeliac disease and as an approximate only 1 in 30 people will get Coeliac disease.
A first degree relative, should most definitely get tested to see if they have Coeliac disease; there is a 10% chance that they may too be a Coeliac.
- What is the difference between Coeliac Disease and Non-Coeliac Gluten Intolerance/Sensitivity?
The Answer: Unlike Coeliac Disease which is an autoimmune disorder rather than an allergy; that damages the digestive process in the small intestine. -You can read more about what happens inside our bodies here– Non Coeliac gluten intolerance or sensitivity causes a stress response which triggers the body to fight off the invader “the gluten protein” rather than as in Coeliac disease triggering the body to attack its own tissue.
These questions below relate to the human side of being a Coeliac. The answers below may be helpful for you in making your own decisions and or informing on specific topics a Coeliac will have to deal with.
- What precautions do you have to take when preparing your food?
The Answer: I split this answer into two parts:
In my own kitchen/family kitchen
In my own kitchen it is quite easy to ensure that I remain safe and un-glutened. My partner uses a separate chopping board, toaster, knives, sponge and all is kept stored away from the other items. In the fridge we have two lots of all the spreads we both enjoy including margarine/butter. However my partner doesn’t eat a lot of food that contains gluten, for dinners we eat a standard protein and veggie serve, if we do decide to splurge on pasta then he’ll eat gluten free but otherwise it’s just bread and biscuits/cookies that he enjoys snacking on. They’re easy enough to store away and ensure that crumbs aren’t left lying around.
If you live in a household where you are the only Coeliac and there are large quantities of gluten containing foods it can definitely be much harder. If you live with your family then it may be easy enough to keep a chopping board, plates, knives and food items just for you; make sure you wash your plates with a separate ‘special’ sponge as well. Wipe down all bench tops thoroughly with hot soapy water to ensure you get rid of as much of the ‘traces of gluten’ as possible.
If your family isn’t inviting and you have siblings who may ‘accidentally’ dip their crumb covered knife into your jam then you may have to take the ‘shared accommodation’ approach, this of course is what I recommend for anyone living in shared accommodation where the roomies may not be so welcoming to your new diet. Having a mini fridge in your room may be the best way to avoid contamination; keeping your utensils and plates in there as well. I did this whilst I lived in the university dormitories. It goes without saying that you should also wipe down all bench tops thoroughly with hot soapy water in these circumstances as well.
For both house holds when heating anything in an microwave, cover your food, either by having the lid to your container on or by using glad wrap or baking paper. This way none of the food remnants, the splatters, the microscopic traces you can’t see and other icky stains that no one bothered to clean up won’t accidentally fall into your food. When cooking with the oven, place your items on the top shelf so that gravity doesn’t drop any unexpected nasties into your casserole, you could also cover the tray (although this will influence cooking times) and if possible turn the oven up as hot as you can before cooking. It won’t be a sure thing but heat has been noted to reduce the traces of gluten.
In a communal or other kitchen
At work we have a communal kitchen; although I usually pack a salad or something that doesn’t require heating there are the days when I decide that I’d like something hot. A communal kitchen means a communal microwave and oven; take precautions as noted in the last paragraph of the previous section. In my desk drawer I keep a separate bowl and utensils in case someone forgets to wash things and puts them back or the dishwasher is dirty and regurgitates gluten particles onto the dishes in it. I also keep my own sponge.
If I am cooking at a friends or family members house I will wash everything, doesn’t matter if they thought it was clean already with a newly opened sponge. I don’t bring my own for the simple fact that I don’t want it to become contaminated. I would probably bring my own ingredients and again follow the methods in the above sections.
For tips on how to cope with other people cooking for you, see the next question.
- What strategies do you put in place when you aren’t in charge of the food?
I always ask questions, well actually Brody asks questions. I am getting better though and it is easier to ask someone you know. Ask them about the ingredients if you think that something could be off. You can ask them if they use the same utensils, change gloves and so on. When it is just eating out at a friend or family members house I call up and remind them to keep everything separate, at this point Brodys mother texts me the day before I go over to let me know what she got that I can have, how she is cooking it and what colour plate it will be one. She’s one of the good ones. Not all of them are however. If in doubt of how something was cooked feel free to politely decline.
If ever put in the situation where they question the reason you are not eating their food just remain calm, don’t let them push you into eating something that will make you sick. If you haven’t already, explain to them why you can’t eat the food. If you feel extremely uncomfortable or too upset, you can always leave. However if you keep a little emergency food kit in your bag then you can contently watch everyone else eat the food and nibble on the snacks you brought with you.
These questions directly relate to myself, if there is anything you want to know about me as a person, then below is the place you’ll find it. You can also read all about me on this page or get an in-depth look at my back story here.