May is coeliac disease awareness month in the UK and I want to share my story so far. I hope this helps you to either cope with your own diagnosis or enable you to help someone else. I am not a medical professional and speak from my own experience and understanding – I hope you find this information helpful and I trust you speak to your own doctor if you want to discuss a medical diagnosis.
Seek for formal diagnosis
I was diagnosed with coeliac disease a couple of years ago. My diagnosis coincided with me burning out big time while I was trying to transfer to a new career. When I had the debilitating tiredness and feeling sick in the morning, I thought it was due to sleepless nights and stress of simultaneously working and studying. I had tested negative for gluten antibodies before, but as my gastrointestinal issues had resurfaced, my GP suggested re-testing for coeliac disease. Sure enough, the blood results were positive and I had an endoscopy after a 4 month wait to confirm.
I have often heard people postponing talking to the GP about their stomach issues because they are afraid of the possibility of needing an endoscopy to get a diagnosis. I do understand why one might feel anxious over it as the people who talk about it are typically the ones to have found it difficult. Please seek medical advice on your symptoms sooner rather than later and if the need for further examinations arises, speak about your fears over endoscopy etc. Often you can get sedated if you are really worried and even if that is not possible, the medical teams are professionals and can guide you through the procedure. I have had endoscopy twice and think it’s one of those things where the idea of it feels scarier than the procedure is. Getting clarification on the issue troubling you is at least in my mind worth the momentary discomfort. You can find more information on getting diagnosed on the Coeliac UK website.
Also, rather than self-prescribing yourself to a gluten-free diet, speak to your doctor about the possibility of coeliac disease and getting tested for it before you cut out gluten entirely, as one needs to have gluten in their system when you go through the tests for them to be conclusive. As tempting as not eating the thing potentially making you ill is, cutting it out too early can delay your diagnosis. If you are really struggling, the medical professionals hopefully can navigate the situation with you so that the symptoms can be managed.
You will find your way of enjoying being gluten-free
When I was diagnosed, I had the advantage of knowing what a gluten-free diet is due to my dad being coeliac. I already knew how to cook gluten-free and was a relatively confident baker managing a gf cake or biscuits when dad was visiting. Even then having to go gluten-free myself I felt a sense of finality. I quickly realised that spontaneous days out and having Sunday Lunches at pubs weren’t a thing anymore (little did we know how the world would turn the tables on everyone with this one).
However, as I like to figure things out, learning to make old favourites gluten-free is now a fun game for me. You have maybe seen my recipe posts, or read about my journey into baking gluten-free sourdough bread? I am constantly on the lookout for new cusines with GF foods I haven’t tried, which seems to be an endless journey of discovery. Whenever I find a restaurant with a totally gluten-free fryer I feel like I want to burst into song! Going on a picnic, I want to make sure my food looks better than anyone elses, and I typically bring enough to share.
When you are diagnosed, and suddenly can’t eat food that has any gluten or has come in contact with things containing gluten, the world might feel quite unsafe. However, you will learn to manage it and you will also find that there are a lot of things you can eat and might even find that you prefer eating the new way. Here are a few things I have found helpful in managing a gluten-free life that doesn’t feel “meh” at all:
- If you want to eat out, research the options in advance.
- Coeliac UK has a list of accredited GF restaurants.
- Check websites of restaurants in the area if they have gluten-free menus (many chains have them as do more and more independent restaurants).
- Indian and Mexican restaurants are often quite good for gluten-free.
- Places that cook from scratch are usually very adaptive and they have less labels to check.
- It is best to call a restaurant in advance to check their ability to cater for you. Asking how they are managing possibility of cross-contamination with gluten is a good way of measuring their level of understanding, as this will fluctuate a lot. Don’t take “yes it’s gluten-free” at face value.
- On days out, have backup snacks in case gluten-free options can’t be found. Usually you can find something sweet, but savoury is still often trickier. GF crackers/breadsticks and hummus or some other dip has seen me through various trips to amusement parks.
- When food shopping, the more you can buy naturally gluten-free things, the quicker it is to check labels and you will save money.
- Preparing your own food when you can offers more flexibility and selection and it is going to be cheaper than constantly buying gluten-free substitutes.
Allies are important
The more people understand the restrictions of a gluten-free diet and that it’s not just the ingredients in the food but also the preparation and serving that matter, the less consuming it is for us with coeliacs to keep us safe. If we can trust the person we are talking to know our needs exactly and they communicate it clearly, it is like music to our ears as we don’t have to necessarily double or triple check everything. We probably still will, as we know how easy it is to overlook something, so do excuse us when we do.
So as a person with coeliac disease, do help people understand why you need to be so strict with your diet. If you are the person that has been told the needs of a coeliac, I hope you take these needs seriously and help the person feel safe of what they are eating without feeling that they are burdening you. Ask questions when you are not sure what to do, I can answer the first couple we often get:
- A person eating gluten-free can’t eat just a little bit and be ok with it
- The food needs to be gluten-free, and it must not come in contact with gluten-containing foods
- Separate cooking dishes
- Clean preparation surfaces
- Separate serving dishes and utensils
- No crumbs
- Check the drinks, too (no regular beer, no malted drinks)
Download my GF shopping guide
I have prepared a beginner’s guide for shopping gluten-free. Download ‘Supersafe in the Supermarket’ guide and join my list to get updates on other things I come up with to help you live a more enjoyable GF life.
I really want to help you live a more joyful life and avoid as many gluten pitfalls as possible. In addition to getting email updates you can also subscribe to the blog and WordPress will let you know when a new post is out.