Gluten free dining

I’ve been meaning to keep a record of gluten-free restaurants for some time now, and the blog feels like a perfect way to keep an ongoing record. Luckily for me and all the other peeps out there with food intolerances, many restaurants and cafes now cater for a range of dietary requirements. This will be a record of my experiences of eating out. Please note, I will only include on the list restaurants that I have actually been to myself, but if you have suggestions of places you’ve visited I’d love to hear from you!

*FYI – in my experience, restaurants either cater for dietary requirements, or they don’t, so if somewhere has good gluten-free options they are generally good for people with other requirements too, but the focus of this list will be gluten.

Devon, UK

  • Atlantis fish bar, Exmouth – offer gluten-free batter. There was a bit of a wait, but they said if you phone in advance they’ll get it ready. The fish and chips were fine, but if you really want fish and chip heaven, see Premier fish cafe below.
  • Boston tea party Exeter, Honiton & others – do gluten free bread and normally have gluten and dairy free cakes. Boston’s is best for breakfast in my opinion. Their eggs are free range and meat ethically sourced, and there’s lots of veggie options too.
  • Dart’s Farm Restaurant, Topsham – have separate gluten-free and low carb menus, very well marked and gluten-free bread so most things on the menu are feasible. Even offer a choice of white or granary gluten-free bread which is a rare treat!
  • Fingle glen hotel, Exeter – the chef here may just just be a magician. They do themed nights every so often and me and my boyfriend went to a Moroccan night recently. The food was incredible. They sent me a list of gluten free options by email beforehand, and the waitress gave me full details of allergens on the night.
  • Premier fish cafe, Budleigh Salterton – offer gluten-free batter and oh my word, they may just be the best fish and chips I’ve ever tasted.
  • Tea on the green, Exeter – an independent cafe on the cathedral green. They have homemade gluten free bread and paninis, pasties, cakes and scones. Also have soya milk for tea. Lovely little cafe.
  • Urban Burger, Exeter – man oh man, this was some good sh*t. Homemade burgers using local Devon meat, they offer both a gluten free bun and a bunless option. All burger patties are gluten-free. And they offer a ‘build your own’ where you get to pick your own meat, sauce and extras, which is extra helpful for those of us with multiple dietary requirements as you know exactly what’s in it.

Chains

  • Byron burger – offer a ‘skinny’ option with a salad in exchange for bun, burgers are gluten free and pretty yummy. As an added bonus they do sweet potato fries (yum).
  • Pizza express – offer gluten free pizza bases. They also do a cheeseless pizza for dairy free/vegan peeps and someone once told me if you take your own cheese they’ll use it for you, but I can’t verify if that’s true.
  • Pret a manger – good for gluten/dairy-free, veggie and vegan lunches. All their food is well marked with allergen info and there’s several gluten-free options.

Other UK

  • Minnack theatre café – if you happen to be visiting the minack theatre on the south coast of Cornwall, their cafe had several gluten free, dairy free and vegan cake options.
  • Mirren’s restaurant, Newtown, Wales – offer a good range of gluten-free tapas dishes as well as several other dishes. Menu is clearly marked with GF, Veg or Vegan, and the food was delicious.
  • The Italian kitchen, St Ives and Hayle, Cornwall – Offer all of their pasta and pizzas as gluten free. Their gluten free pasta was made from scratch and was really tasty. Highly recommended if you’re in cornwall.
  • The Raw Chocolate Pie Company, St Ives – I felt like I’d walked into heaven. This lady makes raw ‘chocolate’ bars using cacao, coconut oil, and other raw ingredients. This place won extra brownie points with me because, unlike a lot of raw treats branded as being ‘healthy’, these had a super low sugar content and really were pretty healthy as far as I could tell. Winner! They have an online shop too, FYI.
  • Treen cafe, near Penzance, Cornwall – this was one of those absolutely random, ‘eh?!’ moments. We stop into a teeny tiny cafe in the village of Treen on the south coast of Cornwall, assuming there’s not a chance in hell of there being anything suitable for me. They had homemade gluten free tarts (including a veggie option), and dairy free ice cream, amongst other things. Happy days! If you happen to be in the area, take a walk along the south west coast path to nearby Pedn Vounder beach – breathtaking scenery.
  • Turk’s head, Penzance – a little pub that doesn’t look like much on the outside, but had a lovely menu, although we were admittedly a little disappointed with the food. When asking about allergen information they replied ‘most things are gluten free and the things that aren’t, we can make gluten free’. Sweet nectar to any coeliac’s ears!

Avoid!

Luckily this list is pretty small for me, but it’s worth keeping a note of the places that really don’t do a good job of catering for dietary requirements.

  • Wetherspoons – sorry to burst the wetherspoons bubble, but they really do not cater well for gluten-free. The menu is a little confusing with regards to food intolerances, and last time I checked there were only two options for gluten-free, one of which was a salad (yawn).

Relationships, love and infertility

This feels like an oddly personal topic to be writing about on a public blog, especially for me; a private, reserved, keep-myself-to-myself kind of person. But as I’m getting older, infertility is creeping up my list of things I need to be worried about. For me, fertility is a multi-faceted source of conern.

A little under a year ago I was diagnosed with Polycystic Ovarian Syndrome, or PCOS. Women with PCOS either don’t ovulate at all, or ovulate irregularly and infrequently. Without ovulation, there can be no conception. And so a common symptom of PCOS is infertility. In fact, many women aren’t diagnosed with PCOS until they attempt to conceive and find that they can’t. Luckily for most women with PCOS, there is a drug called Clomid or clomiphene, which can be used to stimulate ovulation and has a pretty good success rate. When Clomid is unsuccessful, IVF is usually the next option.

For me, however, those options are pretty much void. Because my EBV symptoms are so closely tied to my hormones, I currently take bioidentical oestrogen. My own oestrogen levels are excessively low due to PCOS, and when my oestrogen levels are lower, I get sicker. So I supplement with oestrogen and I feel somewhat better. I’m still trying to get my head around this relationship. It seems like friggin’ sod’s law that I would have chronic EBV which is activated when my oestrogen is low, AND PCOS which means my oestrogen is chronically low. I often think about this. I believe that a healthy body is a healthy body, and an unhealthy body is an unhealthy body. I just don’t think that diseases can be independent of each other, and I wonder if my hormones and therefore my PCOS, would improve or even resolve if my body could effectively deal with the EBV. Whether or not I will ever find out the answer to that question, I don’t know.

The catch-22 is that fertility drugs, including Clomid and those used for IVF, would require me to stop taking oestrogen. And that would mean being horrendously sick. It would mean giving up work, giving up my social life and hobbies, and spending the vast majority of my time in bed, horribly sick. This isn’t just a glass half-empty moment; I’ve been there before, with my own super-low levels of oestrogen and the EBV in pretty much a permanent state of activation, and it wasn’t pretty.

So, if at some point in the future I wish to have children, there’s a good chance I’d need to stop the oestrogen in order to do so, and I have to seriously question whether I want children that much or not. The other factor of course, is that raising children whilst chronically sick would be quite a challenge. I already struggle to keep up with the demands of life. A full-time job is extremely difficult at times, and if it weren’t for my current employer’s flexibility with working patterns and allowing me to work from home, I probably wouldn’t have a job at all. Household chores are also difficult at times, and I’m lucky to have a boyfriend who shows me endless amounts of patience, understanding that sometimes I can do more, and sometimes less. But add looking after children to that mix, and I honestly don’t think  I would manage.

So ultimately, I think my ability to have children rests entirely on finding some answers to EBV, and finding a way to improve my quality of life. I gave up on any realistic chances of finding a complete cure some time ago, but I do hope that I may be able to achieve a level of health that will allow me to conceive and raise children.

I’m 28 years old and, for the first time in my life, I have a man by my side who I think I’d quite like to be the father of my children. That is a wonderful thing, but it brings with it many emotions. Sadness and grief that I may never be able to fulfil that dream, disappointment that it might never be the happily ever after I dreamed of as a child, and worst of all, guilt that not only may I not be able to realise my own dreams, but that I may kill someone else’s dreams too.

For now, I am trying to live by the rules I always made for myself. Live for today, not tomorrow. Focus on what you can do, not on what you can’t do. And think about what you have got, not on what you haven’t.

 

When life’s an experiment

For the last couple of years, my life has been one giant experiment. Since getting a diagnosis, the experiment has at least been somewhat focused. When you don’t even know what the problem is, finding a solution is next to impossible. In fact, for most of the years prior to getting a diagnosis, I don’t think I really even bothered to look for solutions outside of my GP’s office. I think we live in a society where the doctor is assumed to have the answer to everything. If you’re sick, they’ll do a test, tell you what’s wrong, and give you a pill to fix it. Putting so much faith in medicine’s ability to fix it means that if medicine can’t fix it, life feels pretty grim. Where do you go from there? If the doctor doesn’t know, who the hell does know?

It was probably just over a year ago that something changed. I spent several months being sicker than I’d ever been, and my mindset changed. This couldn’t just be it. This couldn’t be what the rest of my life was destined to be like. If the doctors didn’t know, I’d at least try and work it out myself. It was at that point that I started looking for possibilities outside of medicine. Nutrition and wellbeing became a large focus of my efforts. Coming from a science background, I think making the transition away from medicine was hard for me. A lot of ‘alternative’ (which I now know is really just a word for ‘not funded by the drug industry’) treatments are really scoffed at by people in the medical community, and I was surrounded by that community both in my professional and personal life.

At this time a year or so ago, I read a lot about food intolerances contributing to chronic illness, and I decided to get tested. There are a LOT of nonsense food intolerance tests out there. And this is where it gets tricky – trying to tease out the sensible from the stupid. But I found a blood test that detects antibodies to certain foods and food components, and I was happy with the science behind it, so I went for it. It showed that my immune system was reacting to gluten and dairy, so I eliminated both completely. It’s hard to know exactly how much of an effect that had. Ultimately, I was still sick. I still had the usual symptoms of EBV. But there was a definite improvement in my fatigue and some other weird symptoms that I’d never really even th0ught about. I used to get really severe mouth ulcers. I almost always had at least one mouth ulcer and anything up to 15 at once. They were so horribly painful that I dreaded anyone speaking to me, knowing that the pain of talking back would be unbearable. I also used to get a rash called folliculitis, inflammation of the hair follicles, on my chest. When I cut out gluten and dairy, both of these things improved significantly.

Gluten has been permanently removed from my life ever since, and I don’t really miss it. You can get gluten-free everything these days. But last Christmas, I was craving cheese. Dairy felt much harder than gluten because there aren’t the same dairy substitutes, unless you want to consume soy all day long. So I reintroduced some dairy, starting with cheese, then butter, then yoghurt, and finally, a couple of weeks ago – milk. I went for organic whole milk thinking it was least likely to cause upset. For the last two weeks, my mouth ulcers have come back with a vengeance. Just as one starts to heal, another one rears its ugly head. God I hate those things. And that weird little rash has started to creep back in too.

So, it is with much sadness, that dairy has been booted out the door again. When I think about it, I don’t really agree with eating dairy anyway. I believe that cow booby-milk was designed to be fed to baby cows, not adult humans. It kind of makes sense to me that a lot of people might have problems with dairy, because I just don’t think we’re designed to consume it. But alas, there’s no denying that having a big dollop of clotted cream on your strawberries just ticks an awful lot of boxes. Eating out becomes tricky too – most places cater for gluten free, and a lot are ok with dairy free too, but somehow when you ask about both, you get an ‘oh-she’s-one-of-those‘ eye roll.

Of course, if it helps me become ulcer-free once more, it’s a small price to pay. But that’s the trouble with this god damn experiment. It’s just that – an experiment. I really have no idea if dairy is the issue here. It’s a stab in the dark based on a rough correlation I think I’ve seen. But who really knows? There are so many factors at play at any given moment that it could be anything. And honestly, when the uncertainty and potential risks of every single life choice, down to whether to have whole milk or soya on my granola this morning, are so huge, life feels a little depressing.

The advantage of disadvantage

I recently watched a video of Michelle Obama giving a speech to students at the City College of New York (link here: http://qz.com/700823/michelle-obama-told-graduates-of-the-poor-mans-harvard-that-living-without-privilege-is-an-advantage/ )

The general message was this: facing adversity is an advantage, not a disadvantage. It reminded me of a book I once read called David & Goliath, by Malcolm Gladwell (well worth a read FYI!). It is a series of stories of what Gladwell calls “ordinary people confronting giants”; people facing all kinds of adversity and disadvantage. I think his message goes a little bit further than Michelle’s. I wholeheartedly agree with her argument that facing adversity makes you stronger, allows you to handle setbacks and makes you better equipped to deal with challenges in the future, giving you an ‘edge’ over those who haven’t faced such adversity.

But in David & Goliath, Malcolm Gladwell’s argument is that being the underdog in any given situation fundamentally changes you. It opens doors, creates opportunities, educates, and allows you to achieve things that others might deem unthinkable. The advantages of disadvantage, he says, go well beyond just making you more resilient.

I read this book about a year ago when I was at a real low-point with my health, and the message behind it really impacted me. It allowed me to reframe my sickness and see the situation in a totally different way.

Now let’s get this straight: I’m not trying to polish a turd, chronic illness sucks. Actually, all illness sucks. Anyone who’s ever had a cold, a sore throat, a tummy bug, an injury, surgery, depression, pain – in that moment when you are suffering, it’s hard to think about anything else, it consumes you. I think, therefore, that even those who’ve never experienced chronic illness can still picture what it might be like. Imagine that cold/tummy bug/injury coming back over and over and over again, a permanent parrot on your shoulder, a constant threat of illness and pain that could strike at any moment without warning. If I could choose to go back and live the last 12 years of my life without chronic illness, I would absolutely be there in a heartbeat.

But, reframing my illness to focus not on how bad it is or how unfair it is, and instead thinking about the advantages it has brought me, has been massively helpful in my ability to deal with it and stay emotionally healthy. And I don’t just mean superficially telling myself what a wonderful thing it is to be sick, that would be stupid. I mean really thinking about all the positive things that have happened as a result. And the truth is, there really are a lot of positives. I would not be the person I am today if it wasn’t for chronic illness. I mean, I would literally be a different person. It has totally shaped my entire adult life, both who I am and the things I have achieved. And honestly, I quite like who I am, and I quite like my life too.

These are just a few of the examples of positive things that have come from my illness:

  • It has made me extensively research the effect of nutrition on health and illness, and has therefore led me to a way of life that is infinitely healthier than the one I was leading a few years ago. Chronic illness or not, taking good care of our bodies has to be a good thing, right?
  • It has made maintaining friendships quite difficult at times, which therefore means that the friends I have now are all people who are patient and understanding, who don’t pressure me into doing things I can’t do and who try their best to support me in various different ways.
  • Ok, this one might seem a little ridiculous. But I am bloody good at crochet! I started learning to crochet last year when I was unwell a lot and I could no longer do many of the things I used to enjoy (running and playing music were the two biggies). So to fill my time I taught myself to crochet using youtube tutorials. Well, not to blow my own trumpet but I’m pretty darn good at it now so, two fingers to you EBV.

These are just a few examples. There really are many, many more. So, to anyone reading this, I encourage you to reframe your difficulties. Of course, adversity sucks, it’s human nature to want to avoid unpleasant situations and feelings. But no matter what the situation, I promise you that somewhere in there there is a positive to be had, and thinking about the situation from a different perspective may just make it all feel a little less overwhelming.

 

Where I’m at now

Read My story Part 1 and My story Part 2

8 months after receiving a diagnosis, I am doing much better. I have many days where I feel well, I have energy, and I can spend time doing the things I love, with the people I love.

But I am nowhere near a level of health that I am happy with. I still have many days of sickness. The last month has been particularly bad, for reasons I’m not entirely sure of – stress I’m sure is a factor, having just moved house and having some emotional stresses recently too.

My latest bloodwork showed that my oestrogen levels are within the normal range, although still on the low side. All my other hormones are now normal, presumably thanks to the medications I am on and the lifestyle/diet changes I have made.

My attention recently has moved towards other factors besides hormones. Ultimately I have a burning desire to understand WHY this has happened to me. Sure, my hormones have been all over the place and I know that this makes me very sick. But WHY does it make me sick? There are millions of women all over the world with PCOS, but most of them don’t have CAEBV. I believe that something has gone fundamentally wrong with my immune system. I believe that being on the contraceptive pill at such a young age may have had something to do with that; the undeniable link between my symptoms and contraceptive pill use in my teenage years points me in that direction. But I’m not on the pill now, and my hormones are (relatively) normal. So why do I still get sick?

In creating the ‘About ebv’ page for this blog, I have found some new research about CAEBV. I have yet to read them in full (academic publications about the immune system don’t exactly make for light reading…), but I am hoping to get a better understanding of what scientists DO know about CAEBV, and what treatments are being investigated. I know that my chances of receiving any of those treatments anytime soon are very slim, since most of them are only in the experimental stages. But knowing that there are people out there trying to make sense of this illness, and trying to find novel treatments to improve the quality of life of people like me, fills me with so much hope. I am so unbelievably grateful that I have a diagnosis, that I have the ability to follow and understand the science, that there are people out there trying to find answers, and, most importantly, that I have wonderful loved ones who are on this journey with me.

The blogging effect

A little over 24 hours since I became ‘ebvwarrior’. A half-hearted, unconsidered decision. Turns out it may just be the best decision I’ve made for a long time.

I honestly didn’t think anyone would be interested in reading my blog. I don’t mean that in a self-pity kind of way, just that your own life always seems so mundane and average that you can’t really imagine other people being interested enough to sit down and read about it. I confess, this blog is a selfish blog. A way for me to track my progress, write down how I’m feeling, and keep a diary without it feeling like a naff polly-pocket affair reminiscent of my teenage years.

But since posting my first blog I have been inundated with messages from people all over: friends, friends of friends, friends of friends of friends. The last few weeks have been difficult and frustrating for me health-wise, and I was feeling a little worn down. But today, I feel uplifted and inspired by all you wonderful people who have taken the time not only to read my blog, but to actually take the time out of your day to write me a message of support.

Thank you readers, I feel infinitely less alone than I did 24 hours ago x

The emotions of chronic illness

It seems strange that in deciding what my first blog post should be, I have focused on the emotions rather than the physical symptoms. I am a bit of a keep-it-all-inside kind of person. Battling with this illness for 12 years, friends have come and gone, relationships have ended, that’s just the way of life. There is only really one person who has been there through it all, and that’s my mum. So I suppose you get used to dealing with it all yourself. What’s the point of talking to someone about how you feel when they can’t possibly understand what you’re going through, and when they might not be in your life anymore come next week, next month, next year?

When I’m sick, all my energy is taken up with the sickness, so that talking about how I’m feeling becomes even harder than normal. I’m sure there’s a primal, physical aspect to that – your body needs to preserve energy to fight the infection, right? Social chit-chat is definitely very low down on my list of priorities when I’m feeling sick, which must be pretty hard for my loved ones to deal with sometimes.

Chronic illness is a constant cycle of emotions. When I’m sick I’m filled with sadness, despair, hopelessness, disappointment. When I get better there’s happiness, excitement, hope, but there’s still anxiety, fear, worries about the future.

I am always seeking new information that may help me – new supplements, a new diet, a new medication, a new doctor. But sometimes that information can be overwhelming. I have read about so many different diets that might help EBV. No gluten, no dairy, paleo, vegetarian, autoimmune protocol, low sugar, low carb, and my most recent discovery – low arginine (blog post on that coming up). Then there’s the supplements: multi-vitamins, fish oil, monolaurin, cordiceps, colloidal silver, lysine….I could go on and on. In theory, all this information is great. But where the hell do you start when you are all on your own with a million different things that ‘might’ make you feel better? How long do you try something before concluding it hasn’t helped? Do you do one thing at a time or just bung them all in there and hope for the best? This is where my scientist-researcher brain probably makes life harder. How can it be a controlled experiment with so many factors at play?

So then comes the despair and hopelessness. How can I possibly get better if I have absolutely no idea what might actually help? In science you’re always taught to think about your sources. A peer-reviewed academic publication is a more reliable source than a random comment from one person online. But what do you do when 100s of people say that xyz has helped them with their illness? Is it worth taking the shot, even though your doctor would probably laugh in your face if they knew what you were trying?

And then I feel angry that I am spending so much time and energy researching these things when I could be enjoying life. At what point does information-seeking become obsession? When should you let go and accept the situation for what it is? It is a fine balance between not giving up the fight for good health, and not aimlessly searching for a cure that doesn’t exist.

But the worst emotion, the absolute worst, is loneliness. I am very lucky to have a wide support network of friends and family. But none of them have experienced chronic EBV. Almost all of my friends see me only when I am well, so they truly have no understanding of what my life is really like, and I can’t expect them to. Even my closest loved ones still don’t have to experience it first-hand. No-one else can share my physical experience, it is mine and mine alone, and that is a lonely old place to be. I think that is why I spend so much time researching online. There is a strange comfort in reading a story that mirrors your own, in realising you are not alone. At least I can be thankful of living in the age of the internet, where I can connect to other people who are sick too.

In fact, I have a lot to be thankful for. Love, support, a career, a roof over my head, and a body that, despite its flaws, still allows me to practice yoga sometimes, or feel the sand between my toes. I am not sick all the time. The unpredictability of how and when I’ll be sick is one of the things I find hardest, but at least it means I have days where I can function like a normal human being. In fact, at the moment, I have quite a lot of those days. I get to play with my nieces, practice my headstands, make love to my boyfriend (sorry mum). And chronic illness at least means that I will never take those simple pleasures for granted.