Coeliac disease - post diagnosis
Following my diagnosis I had to attend a few different appointments to set me up in my new life as a fully fledged coeliac. In the UK there is a standard procedure you go through and you will be assigned a coeliac specialist at your local hospital who will monitor you annually to check you aren't accidentally eating doughnuts on a regular basis. As part of this process you will likely see a dietician who works alongside your consultant and either one of these will provide you with some literature on the basics of coeliac disease, some dietary recommendations and a suggestion to join the coeliac society. I embraced this with open arms and signed up straight away. The coeliac society sent me an up to date and thorough guidebook detailing what supermarket products were safe to eat and also restaurants that have been approved and trained by the coeliac society. It also helps guide you through ingredients labels so you can identify what to avoid. My GP also gave me the option of ordering gluten free products on prescription. They were going to give me FREE FOOD. I felt thrilled to have a health condition that provided me with complementary pizza bases. I went to town on requesting samples of gluten free staples so I could take my pick of the best. I was ecstatic when one company sent me an entire hamper to try. But if gluten wasn’t going to kill me, then this was going to give it a damn good go. Aside from it all closely resembling what I can only imagine is akin to the taste of damp cardboard, the list of ingredients used in an attempt to replicate the real thing was shocking. If it takes 27 ingredients, many of which were just numbers, to produce a 'loaf of bread' I was going to pass. I imagine the nutritional value wasn't far off what I'd get from making a sandwich out of play-doh. But at least that smells nice. I politely declined the prescription food and turned to the coeliac guidebook. The vast majority of the book focusses on heavily processed, pre packaged food, snacks and confectionary. Something just wasn’t adding up for me. How could you be diagnosed with an inflammatory digestive disease and this be followed up by promoting the consumption of more toxic, inflammatory, nutritionally barren food? I ditched the handbook and the instructions on how to read food labels. At this point, my thoughts were, if it has more than three ingredients and takes a manual to tell me if its safe or not, is it worth eating? And moreover if I can't pronounce an ingredient, I sure as hell don't want to eat it.
At the point of diagnosis you will also be made aware of any nutritional deficiencies that may have affected you as a result of your condition. For me I was well on my way to iron deficiency anaemia and had a face worthy of being cast as a member of the Cullen family. The insides of my eyelids had no colour, it contributed to my hair loss and constant fatigue. I was prescribed iron supplements by the hospital which I immediately began taking. It is well documented that iron supplements can cause constipation and, oh my, they did just that. But they also gave me unbearable stomach cramps and abdominal pain. I rang my consultant to check if this was 'normal' and she informed me that iron supplements can be very irritating and abrasive on the digestive tract. Excellent. I'd just been diagnosed with severely damaged digestion and given medication to inflame it further. I was less than one week into taking them and I was doubled over in pain. I metaphorically drop kicked this recommendation clean out the window alongside the gluten free cardboard bread and the handbook on which gluten free toxic food I should be eating. I knew I had to get my iron levels up though and red meat wasn’t an option. My digestion was so bad that even small portions left me constipated for days on end. I started searching for gentle natural alternatives and somebody recommended floravital. A gluten and lactose free concoction of floral and herbal juice, naturally high in iron. I wont lie to you - its not the most appealing taste in the world, but it worked. I had no side effects and no pain. I got through several bottles of the stuff over the course of about a month and returned for my repeat bloods – my iron levels were back into normal range.
Post diagnosis, the approach you take on your own individual health journeys will vary greatly, depending on the severity of the damage done and how long you have suffered. If you are lucky enough to have had your condition diagnosed in the early stages, you will likely feel a remarkable and notable improvement by going gluten free alone, but you will still need to be mindful of what you eat and try to reduce inflammation and rebuild your digestion. You are not going to do this with gluten free foods. Upon diagnosis you will likely want to ransack the gluten free aisles of your supermarket purely for the novelty factor of being able to eat a Jaffa cake again. Gluten free does not mean healthy by any means. Packaged food, gluten free or not, requiring a manual to navigate the ingredients will never form the basis of a healthy diet.
If like me you have suffered for a considerable amount of time before diagnosis, your digestive tract will feel like its gone 5 rounds with Conor Mcgregor. You will need to take the healing process that bit further and will need to pay close attention to your body. In many cases you will have developed other intolerances and sensitivities, and although the removal of gluten will brighten your world immeasurably, you will still need a lot of fine tuning to get you back to your best.
One of the hardest steps post diagnosis will be the adjustment to your new diet and the discovery of what else you may not tolerate. Food and autoimmune disease are closely linked and you may start to notice particular triggers. Needless to say, the supermarket becomes a very daunting place. You need to re-think the entire process and why you are shopping for food in the first place. You will no longer be mindlessly roaming the aisles and chucking in food without giving it a second thought. You are shopping to nourish and heal your body. You will feel frustrated, overwhelmed and at times reduced to tears. I've sobbed into many convenience store shelves when I cannot find a single snack to eat. I once walked around London crying into a pot of hummus while sulkily nibbling on a carrot stick. I could not find anything else to eat at all that day and I was terrified every restaurant would poison me.
If you feel as lost and overwhelmed as I did – I promise you it gets so much easier. I can now even look back and laugh at carrot gate. I say laugh, I mean mildly chuckle. But I know now how to avoid these desperate situations and not panic when I leave the house.
These are my top tips to help you start navigating your new diet after diagnosis:
You absolutely have to. Always. Do not rock up at the supermarket unprepared because you will get stressed. Make a list before you go of everything you need for the week ahead, and shop from that list only.
Know your supermarket and its aisles
Don’t waste time looking and lusting over what you can't have. Head straight for what you need, tick it off your list. Done.
You don’t need much, if anything that is labelled gluten free. Limit it to the occasional treat or essentials. Do not base your shop around this. Base your shop around fresh produce that is naturally gluten free. Next time you are in your local supermarket I urge you to take a step back and look at the gluten free products. Would you be buying those things if they weren't gluten free or do they appeal because you can eat them now? They may not contain gluten but they are laden with so many artificial ingredients they will only cause more harm than good long term.
I cannot stress the importance of this enough. It not only eliminates food waste but it saves you time and money. Know exactly what you are going to have everyday and how you can utilise the same ingredients to make different meals.
Know your snacks
This has been a real struggle for me due to all the intolerances I have developed. Snacks become vital on days out and trips to unknown locations, if you don’t know when and where you will be able to eat. If you can tolerate them fruit and nuts make easy portable snacks or for a protein boost try some paleo jerky or pork scratchings with no added ingredients. Plane journeys are another one. If you are going long haul you are going to be limited as to what you can eat in flight, so make sure you take something in your hand luggage.
If you have the time cook up double portions of your weekly meals. Cooking from scratch is time consuming, so making large quantities can be a life saver. You can use leftovers for lunches, extra dinners or stashed in the freezer.
Learn to cook
Before my diagnosis my cooking skills extended to popping to the chilled section of the local 24/7, picking up a carbonara and garlic bread, piercing the packet and sticking it in the microwave. Looking back I can't believe I ever thought that was ok. It says a lot about how lazy we are as a society and how little we value ourselves to consider that nutrition. I wont lie learning to cook wasn't fun. It made me furious. But that was only because I didn’t know what I was doing and didn’t have the right resources to support me. Now I cant imagine it any other way and the thought of a ready meal horrifies me. Plus If you cook everything yourself you are eliminating the possibility of getting glutened.
Find your go –to recipes. Have things that you become familiar with that you can throw together after work. Don’t try something new every night. Start by just familiarising yourself with a few meals that you can perfect.
This is so important. People don’t realise how much of a change this is and how important it is to get right. You need support from people to understand not only your dietary requirements, especially if you are sharing a kitchen, but also emotionally. The transition is not easy and your body and mind chemistry will change as your diet changes. There may be some emotional moments during the withdrawal phase as you transition from the standard westernised diet to a more nutrient dense one. I am incredibly lucky in that my husband supports me 100% He has even gone gluten free with me. We eat all the same meals and he has embraced the lifestyle changes I have made and noticed massive benefits to his own health. I never have to worry about cross contamination at home. If you share a household with others who eat gluten you need to keep everything totally separate. You need your own butter/spreads, chopping boards, cleaning cloths, trays etc. Just be very cautious. Label things so people know what belongs to you.
Don’t be afraid to be explicit in your requirements. When I was first diagnosed I felt like an inconvenience in restaurants and nervously told them I couldn’t eat gluten. I cannot begin to tell you how many issues I've had in restaurants, so now I am abundantly clear about what I can and can't eat. You'll be surprised some restaurants can be so accommodating they will literally cook you anything you ask for!
Finally, listen to your body. In the early stages you will likely start identifying other food intolerances, autoimmune triggers and aggravations. You may have got so used to being ill that you don’t realise what normal feels like. Once you remove the thick dark cloud that is gluten you will start to notice other food irritations more easily. If something doesn’t feel right it probably isn't. Eat it in moderation or not at all for the time being while you adjust. Just because it doesn’t contain gluten, it doesn’t mean it wont be upsetting your sensitive tum as you heal.
DISCLAIMER: The information on this blog is purely based on my own thoughts, views and opinions. I am telling these stories to share my experiences with you. The information does not constitute medical advice of any kind and is not intended to substitute the advice of a medical professional. You should consult with a registered GP for guidance on any health related issues and not make any medical decisions based on the information contained within this site. I have no medical training, I am quite simply a coeliac with a story to share.
This blog tells an ongoing story about me and my journey back to health and happiness. A boho soul always looking for my next European adventure. I am a Coeliac, Yogi, paleo advocate, dreamer, Bon jovi connoisseur, sun worshipper, snuggly jumper wearer and wife to my lovely Paulie.