We're back for a final installment chatting all things gluten with the lovely Lea from Can Eat Attitude.
If you haven't already make sure you check out Part 1 , Part 2 and Part 3 of this chat as we've covered some great topics so far like the pros and cons of the Free From aisle and attitudes towards gluten free lifestyles.
This week we're finishing up with a bit of science and talking about whether bloggers need to be responsible for the messages they are spreading on whether or not to eat follow a gluten-free diet.
ALL THE SCIENCE AND BLOGGING GLUTEN FREE RESPONSIBLY
V: Tell us about your diagnosis and what people need to think about if they suspect they’re Coeliac.
L: Firstly, brace yourself for what could be a bit of a long winded process. It’s a bit of a postcode/individual doctor dependent lottery in how long it will take you from thinking there’s something up to getting the thing sorted.
What’s important in getting a diagnosis is that you keep eating gluten until after diagnosed – I’m so sorry I have to say that but it’s true!
I eliminated gluten through a process of trying to establish the source of my fatigue and constant illness and when I came across Coeliac UK and realised how well it fit I went in to get tested.
I was told that I had to eat gluten 3 times per day for 6 weeks. I couldn’t manage to reintroduce gluten for more than 6 days. Whether I had a stronger reaction having eliminated gluten or whether it was because I finally realised how bad I’d been feeling compared to how good I could feel without it I don’t know, but it was a horrible experience and resulted in a false negative result.
V: So technically you’re self-diagnosed, but you’ve got pretty compelling evidence that you’ve got it right?
L: The GP that helped me through the process agreed that all the signs and my severe reaction suggested I had the disease but because there weren’t antibodies because I hadn’t been able to follow the protocol, they couldn’t officially label it as Coeliac Disease.
It's frustrating but it just means the follow ups and stuff that people with an official diagnosis get such as bone scans, I have to push for myself rather than having someone check up on me.
From what I gather, the process is a little different now as the NICE guidelines changed and people with a false negative get re-tested and have yearly check ups. But that wasn’t the case when I went through the process and I wouldn’t benefit now from going back through it.
V: Totally hypothetically (as you're not a scientist and no-one seems to know definitively!) what do you make of the rise of cases of Coeliac Disease in the last 60 years? The results suggest environmental factors, but no-one can pin point.
L: Well there’s environment as in “the trees and stuff” and there’s the bigger issue of our environment being the “soup” our cells bathe in – there are so many potential factors that could be causing the rise in cases of Coeliac Disease and establishing how they are all interrelated or otherwise would be such a monumental task.
It could be as simple as, medicine has moved on and because people are more aware of it, more people are being diagnosed. I suspect there’s more at play than that though and think that the way we live now is just so at odds with how our amazing bodies have evolved to perform: we live such stressful and overstimulated lives, we eat foods that have been genetically modified, sprayed with unthinkable toxins, grown at unnatural rates, bleached, processed in factories, that are then served up with extra double super-sized quantities of gluten.
That’s a lot of possibly interrelated factors and it doesn’t paint a pretty picture of our food environment but I think all of this has come crashing together to create a toxic soup for our already overloaded systems to handle. And as we seem to be continuing in this fashion for the foreseeable future, I can only imagine that the rates of this as well as other autoimmune conditions will continue to increase.
V: Do you think we'll see a cure for Coeliac Disease in our lifetime?
L: No, I don’t, to be honest.
I think they’ll get slicker with diagnosing through genetics (if the funding is put in place – although that’s very much dependent on which direction our political landscape takes) but because I think a lot of the ingrained (sorry) lifestyle stuff will continue I don’t think it’ll be cured. Plus I think you have to know the true cause to find a cure and what I suspect about the factors causing the rise means that it’ll carry on.
Additionally with awareness being a work in progress and a lot of people not considering it to be an issue I don’t think it will ever be a priority to find a cure – especially when big corporations can make so much money from “helping” sufferers “manage” the disease.
V: God that’s a bit depressing… let’s move on to something happier. Blogging!
I love it, you love it. But we’ve got responsibilities, right? I follow a lot of people on blogs and social media that cook gluten free. Often they’re self-styled ‘health’ bloggers like myself.
Do you think bloggers who are making gluten free recipes and touting gluten free have a responsibility to educate their readers about Coeliac Disease?
L: No, I think a lot of bloggers don’t have awareness themselves of Coeliac Disease and they may be making gluten free recipes for their own reasons. I’d like to think those reasons come from a good place and are not because gluten free gets clicks.
I guess it would be reassuring to know that bloggers touting gluten free had taken the time to do their research properly.
V: Yeah exactly. I think it might be nice for bloggers to be clearer about WHY they're doing gluten free. Oh goodness I almost just used the gluten-loaded phrase “it would help sort the wheat from the chaff!” But what I mean is if bloggers were clear about their motivation for being gluten free then it might help readers decide who are the bloggers that are just “faddy” and which bloggers are doing gluten free having done their research or shared their own experience.
L: Absolutely, yes I do think they should possibly be clearer about why gluten free is important to them and why they want to talk about it.
V: Do you think bloggers should be explaining that gluten free doesn't ALWAYS = healthy?
L: Heck yes, food/health bloggers are in one of the best places to knock that stupid smug and undeserving halo off of “gluten free.”
I think unfortunately a social media summary saying something like “Healthy Eating Gluten Free” can make people think just going gluten free will suddenly give them health benefits. Actually most health bloggers are all about the home-cooking and getting know fresh ingredients, not buying a pile of packaged stuff in the Free From aisle!
V: I am cringing so much - when I started my blog I used "Healthy Living Yeast Free" as a strap line and this is exactly the problem - it was all based on dodgy science!
Finally, what resources would you point people to if they want to learn more about gluten free?
L: Without a doubt I would refer people to Coeliac UK, they have access to all the most up to date research and are there to provide support to people who think they could be Coeliac/post diagnosis/etc.
That would be where I’d be for scientifically backed stuff I think because you can always find some random study paid for by some questionable organisation that proves some theory or another. If you don’t have a scientific background yourself it could be easy to find yourself misinterpreting findings.
I’d also encourage people to listen to their own bodies as the ultimate resource, scientifically backed or not. And if anyone wants to chat to someone that’s been living with CD for a while there are Coeliac bloggers like me who would always be happy to answer questions or point in the direction of resources we’ve found useful.
It’s not science-y but my website features a number of posts on adjusting to a gluten free life and there are some tool-kits in the making for anyone that is interested.
V: Thank you so much Lea! This has been such a fascinating set of blog posts and I am so glad I decided to do it with you rather than having the conversation alone in my head….! I wouldn’t have been anywhere near as informed as you.
If you haven’t already make sure you hop on over to Lea’s website Can Eat Attitude for loads more on gluten free and much much more.
Lea and I thought we could turn this conversation (and all the spin-offs!) into a podcast or video. What do you reckon? Would you be interested to hear us ramble on?!
Lea Tierney is a freelancer and passionate food nerd helping others discover their Can Eat Attitude by sharing how she lives abundantly (not restrictedly) with Coeliac Disease and a vegan lifestyle. Check out her website for recipes, information on her workshops and if you're interested in the gluten free life a little hub of all Lea's articles on the subject.