At 9.45am yesterday (Tuesday 24th November 2015) I received some news that I had been dreading. My gastroenterologist (who had kept me sweating in the waiting room for an hour) rushed me in and said, “Yes well Gillian, as we suspected your biopsy results are positive to coeliac disease.” I felt dizzy and a long howl of terror echoed around the inside of my skull. Luckily I was with my husband. My sweaty digits clutched his leg in horror and all I could do was stare at him with big eyes and a look that said, “Oh for fucks sake!”
It made me very sad. But I don’t really do sad that well. My fallback is angry.
And I just need to tell you how much this has frankly pissed me off. Firstly because I don’t have any symptoms, well I kinda do but I’ve lived with it for such a long time I don’t even notice (more on that later). Secondly because I am completely taken by surprise and feeling gigantically ripped off that, of all people, this is happening to me. I hate the notion of being told I have to give up something. I can’t stand it when people say they are giving up gluten. I’m all like ‘why?’ you just need to chill out and eat some bread, you’ll be right. Sheesh.
And that is because thirdly, I bloody love gluten. I truly love it. I am your typical curvy, carb-loving, queen of baking who loves nothing more that getting elbow deep in some fluffy puffy gluten goodness and punching a piece of dough around the kitchen.
My love for gluten-filled baking is passionate. My kitchen has produced myriad glutenous magic (in case you’re thinking I’m a massive lardass, I’m not baking daily but every week or so, all right?!). Anything from wholemeal flatbreads with burnt bits flipped straight from the barbecue, to homemade thyme and mushroom spelt pizza to delicate buttery pastry filled with goats cheese and eggy goodness to atta flour naan bread for mopping up butter chicken to fluffy blueberry pancakes and juicy orange cardamom muffins. Mmmm GLUTEN.
But all this doesn’t compare to the joy I feel when I chew into a piece of proper sourdough bread or real Italian style pizza made by an expert. Wholesome, chewy, spelty, yeasty goodness. I think that is why I love vintage Champagne. It smells like freshly baked bread.
Yep. Well that’s all gone now.
And I am left with that horrible Simon and Garfunkel song in my head “Oh Cecoeliac… you’re breakin my heart..”
My specialist told me that I now have a chronic illness (that’s really pissed me off too. I never thought I would be the person with “chronic illness”).
If you don’t know what coeliac disease is, it’s essentially an immune reaction in the small bowel to gluten. A detailed description can be found here. When I eat gluten, my body detects something toxic and has an abnormal immune response that affects my organs. My body starts to attack itself. There was a fantastic documentary on ABC television Catalyst last night about gluten, coeliac disease and the gluten-free diet trend. Check it out “Gluten: A Gut Feeling”.
In the short term this means I am unable to absorb nutrients, which has resulted in a bunch of symptoms that I pretty much ignored and just put down to being a busy mother of small children with a job, business, family, etc. I am anaemic, deficient in B12, have regular outbreaks of severe mouth ulcers, compromised immunity (regular bouts of flu, tonsilitis and sickness in general) and crazy can’t-move-my-legs-or-get-out-of-bed tiredness.
But with coeliac the real problem is actually in the long term. If left untreated I could end up with anything from a long list of hideousness including osteoporosis, bowel cancer, thyroid disease, diabetes, lupus or arthritis. And we have a 20 per cent increased chance of developing lymphoma. It’s not awesome.
The frustrating thing is that in the lead up to this (in between doctors appointments, blood tests, biopsies, etc) I talked to a number of people diagnosed with coeliac disease and they resoundingly said they were happy because they’d felt so shit they were pleased to finally have their diagnosis. I felt terrible for them for feeling so crap and for not getting answers. But I was reassured that I must definitely NOT be coeliac. Because I felt, like, totes fine.
One friend, Ana told me:
So that’s why it was such a relief when I finally got a diagnosis, at least I had something I could now control and with diet. I have never liked bread, I guess it was just an internal revulsion so I didn’t mourn it but I do mourn gluten every day. Although now I’m getting to the point if I cheat myself and just have a little bit, it makes me so ill that I don’t get those cheating voices much anymore.
For me, what’s happening right now is not a relief in any way. Maybe if I start feeling really great, then it will make it brutally obvious how crap I’ve actually felt for years and I’ll appreciate it. And in the bigger scheme of things, although I’m pretty angry right now, it isn’t actually that bad. Some of my friends are dealing with serious health issues right now and my diagnosis could be way worse.
Speaking of friends, I have had the most amazing support on my journey to date. Thank you to everyone who has phoned, texted, messaged me or provided beautiful comments on Instagram or Facebook.
I’m still completely freaking out and weirdly embarrassed about telling people (yeah, so I’m just writing a blog post that will go out to 20,000 readers instead) because many people really don’t understand. I didn’t understand coeliac disease until it came and stole my bread. No wonder I’m weirded out though, these are things actual people have said to me :
– “oh can’t you get a second opinion” (no, the biopsy and blood tests are conclusive)
– “god don’t tell me you are one of those people on the gluten-free bandwagon. Urgh, it’s such a fad. Why would you do that” (gluten will actually kill me, that’s why)
– “aren’t coeliacs meant to be skinny?” (THANKS! and some are but many put on weight)
– “well at least you don’t have to be one of those really uptight people about it, a little bit should be fine” (yeah no, not even a tiny bit of gluten. Apparently I have to TALK TO THE CHEF if I am going out to dinner. as if. kill me now)
My gastroenterologist said that I need to think of gluten as a poison. That way I won’t feel that I am missing out on anything.
It was so creepy, we found her hunched in the corner rocking and repeating GlutenIsPoisonGlutenIsPoison in a singsong voice.
I was also reminded, which is the most pertinent point of all, that I am lucky because many people with chronic illnesses would love to be able to just change their diet and manage their condition effectively. Many sick people have to have surgery or take fistfuls of pills or have invasive painful treatments, with nasty side effects. I just have to eat whole foods.
So although I am not feeling lucky right now, I guess once it’s all put into perspective, I am lucky. I am lucky that it’s been diagnosed now, rather than me rocking up to emergency with a broken hip at the age of 50 because I have osteoporosis. Or discovering I have bowel cancer and then realising that my undiagnosed coeliac disease is the cause.
So stay tuned. It’s the first day of the rest of my bread-free life. I’m sure there will be more from me in the “Coeliac Chronicles”, but don’t worry, I won’t be going all Pete Tong and bludgeoning you with the evils of gluten. I promise.
And yes I can still drink champagne.
Are you coeliac? How did you deal with your diagnosis? How do you feel now?
Oh pet, this is terrible news! I share your love of bread, baking, bread, and bread, so I completely understand how devastating it is. And yes, whilst it could be worse, it is nevertheless a complete lifestyle change, which will take a lot of getting used to. One wee suggestion I read recently is to not obsess about finding gluten-free replacements for your old favourites. They’re not as satisfying and it’s sometimes easier to just say “nope, don’t do that”, than to find GF foods that just disappoint.
Oh thank you darling! And that is GREAT advice. There is so much revolting gluten-free food out there. I was hungry the other day when I was out getting a takeaway coffee and I saw a GF biscuit, but then I thought- I would NEVER normally eat a cookie that wasn’t homemade, I’m not going to start now. xxx
Hello there!!! my mum follows your blog and showed me this article.
Sorry to hear you have been diagnosed with Coeliac, it sucks. My 20 year daughter chelsea was diagnosed a year ago. It’s not all bad news, it’s hard eating out but we make lots of gf goodies including scones, gyozas, biscuits, etc. She recently was diagnsosed with Graves disease too which is hyper active thyroid which is a pain esp while she’s sitting law exams at uni.
Eating out is a bit of a challenge as alot of restaurants assume you are a hipster paleo eater and don’t address the issue of cross contamination with gluten. There are heaps of places though that use separate deep fryers for gluten free items so that’s a positive.. A good dietician is a must and the coeliac society is really helpful. It’s better to know and deal with it I think….. Good Luck 🙂 xx it’s a challenge but it’s not so bad, we are having a big family xmas this year at ours and it will be completely gluten free so it’s easier for chel to relax and enjoy……. Adrienne xxxx
You poor thing! I have medically diagnosed food intolerances, that mean I can’t have gluten, dairy, legumes, garlic or onion. It’s so difficult (I’m only 4 months in) but I feel so much better having answers and no symptoms. There are times I get angry though (I loved garlic). Thats when I can be found yelling at my food. It’s actually improved my cooking incredibly -I can probably buy about 10% of the supermarket so I have to be super imaginative and make replacements. So don’t worry- bake away to your hearts content.
Oh no Belinda that is awful but fantastic that you are so clever with your cooking! Well bloody done! In reality it’s the only way to go isn’t it, there is nothing much else you can do but try and adjust and cope with it! xx
Any chronic illness has an adjustment period, so yes, while it could be worse, it’s still bad for you. And you is what matters for now. Don’t pressure yourself to be ok with it if you’re not yet.
And people who think you’re being a fad are stupid. Sorry, but there’s no other way of putting it. I’ve found that people who have reactions like that to an actual medical diagnosis find their way out of my life – sadly it can be the first sign of people not being real friends. At least in my experience, anyway!
Also, I thought that letter from your doctor was funny too.
Great read, suffer from headaches, stomach cramp, gas, can’t loose weight, the list goes on..after reading your article maybe I should see a doctor and have the test!
Oh I wanted to cry. I just know how I’d feel, as think you and I could be gluten-loving twins. You are brave, you are funny, you’ve got the skills and the smarts. You’ll be fine. (But oh I still want to cry)
Oh bless your heart Cheryl, that is so lovely. You just made ME want to cry! Thank you so much and I am sure I would have loved being your glutenous twinny. 🙂 Massive hugs x
It’s such a pain in the arse isn’t it! I have IBS, not coeliac, but if I eat bread I swell up like a balloon. The dietician I saw said I have an intolerance to wheat. But I miss eating a big sanga! My daughter is the same, but also lactose intolerant. And she’s a chef, so it makes it hard for her at work, especially when people carry on about it being a fad. A lot of the gluten free products are gross, not worth eating. It’s a learning journey. xx
Wow you poor things that’s awful! And I can’t imagine how challenging it would be for your daughter to be a chef. Good on her for pursuing her passion anyway. Haha and yes so many GF products are gross. When you cook with some of the flours they smell like rank old feet. MWAH x
Pissed off is probably an accurate summation.
It is however do-able. I am living testament to this.
Take heart.. coffee and almost all alcoholic beverages are gluten free
Oh thank you so much Tara and also for sharing the post! Hahaha oh yes, thank GOD for champs. x
When I was diagnosed about a year or two ago it kicked my anxiety/control freak into full whack. I read so much about all the horrible diseases and health problems that happen even if you eat a tiny little crumb and would go to extreme measures to avoid gluten. I would yell at my housemates for not rinsing their dishes before putting them in the dishwasher because they wouldn’t get cleaned properly and I could potentially get glutened (that’s what I call it when I accidentally eat gluten). I didn’t eat out for a long time and didn’t let anyone else prepare my food. I’m much more relaxed about it now, I’m still really careful and take precautions but I don’t let it control my life anymore
WOW Laura, thank you so much for sharing. I can totally imagine how that could happen. When you think of it as poison, it starts to spin you out a little bit. I really really appreciate your take on this one. Fantastic take-home message to not let it control my life. xxxxxx
I’m not coeliac but I do have an intolerance to egg, whey and gluten. It’s amazing the change in mindset I experienced when I got those blood test results. Everything suddenly made sense. All the symptoms I’d ignored or made excuses for. And the funniest part? The sight of eggs (eg: countless breakfast pics on Instagram) doesn’t appeal to me in the slightest. Bread? Well that’s another story. Gluten/dairy/egg free bread is akin to play-doh. We’ve yet to fall in love.
My mum is and I have the gene to get it and am gluten intolerant at the moment….so on my way to coeliacs.
I have just found this post and oh my god this describes how I feel exactly! I was officially diagnosed in April this year, so it’s been about 8 weeks now… and I still question my diagnosis daily and get proper rage about it, because I had no symptoms whatsoever before! Or at least, I don’t think I did. The occasional mouth ulcers, tired a lot (but, like you – mum, busy life, work etc!), quite a few regular sore throats (is that a symptom?!). So far don’t really feel any better than before my diagnosis and I even accidentally ate gluten the other day and felt no ill effects whatsoever, so I generally just feel pretty angry about it all!
The hardest thing is eating out. I like to be spontaneous… I don’t like making a fuss in restaurants at the best of times, so having to ask for allergen menus or explain CD/gluten free… I’m not a fan!
How do you feel now? Any better? Has the rage subsided?!