It's scary trying new food

Coming up to the ten year mark, I've been low FODMAPS for probably way longer than I should have

I recently had an appointment with my dietitian to discuss challenging some of the FODMAP groups.

You'd think I'd be excited about the possibility of being able to eat new foods ... nope.

Like most people I have an aversion to pain. In my mind, trying new food is scary because there's a reasonable chance of pain. And although I'm a little bit excited that I might be able to try new foods, I'm also scared because I don't want to suffer the consequences of eating food that disagrees with me. 

The impending FODMAP challenge has got me reflecting on the mental health side of food intolerances and allergies. 

For someone living with food allergies and intolerances, every snack, meal or drink is a considered choice. To stay safe, it's in your best interest to read the back of packet food, to ask lots of questions about food you're eating, and avoid contamination risk as much as possible. (Don't stop doing this - you need to do this to stay safe).

As such, it's not a huge surprise to find that research suggests that people with food allergies or coeliac disease are at a higher risk of anxiety or other mental health issues, and disordered eating than the general population. (A few references listed below).

So how do you eat safely while still looking after your mental wellbeing? 

Self-awareness

Maybe it's time to pause for a minute and think about your relationship with food.

Of course you're always going to have to avoid certain foods that you're allergic to*, or gluten if you're a coeliac; but are you also cutting out other foods that you don't need to avoid?

Are you spending more time worrying about food than enjoying it?

Are your food allergies stopping you from enjoying life?

If the answer to any of these questions is yes, it's time to talk to someone (refer to the 'seek help' section below.

*(unless you're working alongside a qualified specialist to challenge a food)

Knowledge

Do you know what foods you're intolerant or allergic to? If it's based on 'it makes me feel sick' rather than working with a qualified dietitian or gastroenterologist, then maybe not. Sometimes we cut foods out of our diet thinking they're a problem e.g. gluten, when really the problem isn't gluten it's wheat, or it's something else in the gluteny food that you're consuming. Unless you've gone through a proper elimination diet, you could be basing your food decisions on guess work, and therefore be missing out on some delicious nutritious food unnecessarily.

Knowledge is power, so when you know what you have to avoid, you can make better choices about what to eat.

Have a plan

When you know what your problem foods are, the easiest way to reduce anxiety is to have a plan. You could cook meals in advance so you always have something in the freezer, carry snacks in your handbag/put them in your glovebox for emergencies,  do preemptive checks before you eat-out e.g. calling ahead to ask questions about the menu, or offer to bring a plate if you're going round to someone's house for dinner. There are lots of ways you can keep yourself safe as long as you think ahead.

Seek help

Sometimes having food allergies or coeliac disease can feel socially isolating. So it's a good idea to touch base with your local allergy community. They'll have ideas of what to eat, where to eat safely, and give you a boost when you're having a poop day.

On Facebook I recommend the following groups  (spoiler! I'm an admin of two of these groups):

Gluten and dairy free New Zealand

Gluten and dairy free Hamilton

Coeliac Disease New Zealand

and some good Facebook pages:

Coeliac New Zealand (official Facebook page of Coeliac New Zealand)

Gluten Dude

Everyday Nutrition

A Little Bit Yummy

It's also worth joining Coeliac New Zealand and/or Allergy New Zealand for extra support

Find a trained dietitian to help you figure out what foods are problematic for you, and how to eat a healthy diet taking into account any food allergies/intolerances.

If you need help with your mental health, don't be afraid to seek assistance. Speak out, and tell someone you need help. Here are a few New Zealand contacts:

Helplines - Mental Health New Zealand

Eating Disorders Association of New Zealand

 

References:

Prevalence of Eating Disorders in Adults with Celiac Disease (2013). V. Passananti,1 M. Siniscalchi,2 F. Zingone,2 C. Bucci,2 R. Tortora,1 P. Iovino,2 and C. Ciacci2

The prevalence and predictors of disordered eating in women with coeliac disease (2017). Rose-Marie Satherley*, Ruth Howard, Suzanne Higgs

 Disordered eating practices in gastrointestinal disorders (2014). Satherley, Rose-Marie; Howard, Ruth; Higgs, Suzanne

 

Disclaimer: I am not a trained medical professional, this post is not to be read as medical advice. Always refer to a qualified medical professional before changing your diet. Seek professional help when required.

You're not just 'a little bit coeliac'

It's really easy to moan about how crappy labelling is at restaurants and cafes. But recently I've talked to a few restaurant staff who are being driven crazy by people's requests for gluten-free food that's not really gluten-free, or requests for the gluten-free menu and then receiveing an order for something that's not gluten-free.

Not sure what I mean? It's the people who ask for the gluten-free options and then when told something on the menu isn't gluten-free will order it and eat it anyway. It's the person who says they're 'only mildly coeliac' so can get away with having chips cooked in the same oil as gluteny goodies. 

Yup there are a lot of people around who fit into one of these two those categories.

Gluten intolerance/sensitivity

If you're gluten intolerant and don't have major symptoms, you might be able to eat gluten-free most of the time and get away with a little bit of gluten on the odd occasion. Since you're not a coeliac, the symptoms aren't likely to be life threatening or dangerous, and I can see why you'd want to eat gluten sometimes. Whether you do or not, is up to you to assess your symptoms vs. the option of eating something yum.

Coeliac disease

If you have coeliac disease regardless of how mild your symptoms are, you must still adhere to a strict gluten-free diet at all times. That's less than 20 parts per million of gluten i.e. barely detectable. This means you can't eat gluten-free chips that are cooked in the same deep fryer as gluteny products. This means you can't take a holiday from being gluten-free.

There's no such thing as being 'a little bit coeliac', it's like saying you're 'a little bit pregnant'. Even if you don't seem to have symptoms when you do eat gluten, you're still doing damage to your small intestine. You'll also be increasing your risk of developing some cancers, other auto-immune diseases, mineral deficiencies, osteoporosis and a host of other crappy things you'd rather not have.

 

So while I'm frustrated at the standard of gluten-free food labelling in some cafes and restaurants, I can also see how annoying it could be for owners who are trying their best to deliver a product that their customers are asking for.

Thank you so much to the cafe and restaurant owners and staff who are super careful with their food labelling, food handling and the time you take to keep us safe - you're awesome. I bet sometimes you'd just like to give up on the whole 'gluten-free' altogether. Please know that you're appreciated so very much by those of us coeliacs who are trying really hard to stay well. 

Elimination stations

In a bid to work out why I'm still having tummy ouchies, I recently made an appointment with dietitian Joanna Baker from Everyday Nutrition. We talked about how some of the foods that irritate my stomach don't seem to fit with the food groups that I'm already avoiding (gluten-free, dairy-free and low fodmaps). Joanna introduced me to the low food chemical diet (also known as the failsafe diet which reduces the amount of naturally occurring food chemicals: salicylates, amines and glutamates being consumed). It sounded like a really un-fun diet, but Joanna assured me it was worth doing an elimination diet to try and figure out what my food triggers are, because I may be able to then reintroduce foods that I'm currently avoiding (OMG please someone tell me I can start eating cheese)! As an added "bonus", the failsafe diet also means I've had to avoid perfumed products, mint toothpaste, and try and stay away from perfumed areas e.g. my yoga studio where they burn incense on the regular.

An elimination diet, is a short-term diet where certain foods are removed from your diet and then slowly reintroduced to see if you have a reaction. Let me tell you, an elimination diet is NOT fun. In my case, the elimination diet was gluten-free, dairy-free, low fodmaps and failsafe. 

Here's what I've been allowed to eat over the past month:

  • Peeled zucchini
  • Peeled white potatoes/brown rice/white rice
  • Unprocessed fresh meat (excluding pork and processed meat) - must be cooked and eaten within 24 hours; or cooked, frozen and then eaten within 24 hours.
  • Potato crisps (only certain brands)
  • Eggs
  • Decaf coffee with rice milk or soy milk (gluten-free soy milk only)

As you can imagine, the past month feels like it's been about 3 years long, I'm desperate to eat something different, and I'm sick of the sight of zucchinis. However, the good news is that my stomach has been feeling wayyyy better.

And now for the exciting and scary stage. Next week I'm starting to re-introduce foods, starting with lactose-free milk. I've already decided that I'll be having my first sample at home when we have a good stock of toilet paper. Wish me luck!

If you suspect you have food intolerances or food allergies, please do not attempt an elimination diet on your own. An elimination diet needs to be closely supervised, to make sure you continue to get enough nutrition in your diet. Dietitians are also better at ensuring you're eliminating the right foods e.g. some foods are both high in fodmaps as well as high food chemical, so you could easily remove a food group unnecessarily. Find a good dietitian before giving up any food group. If you're hunting for a dietitian, make sure you ask them about their approach to make sure it matches with your goals. I chose Joanna because she is pro-whole foods, and is a coeliac on a low fodmap diet herself, so understands what it's like to live on a restricted diet. She lives in Melbourne, but does Skype appointments - so bonus for me.

P.s. dietitians are not nutritionists. A nutritionist is not necessarily qualified, whereas a dietitian is qualified to post-graduate level.

 

Skye Blue Kitchens, and your chance to win something yum

At a recent glutey group catch up, I met the lovely Irene from Skye Blue Kitchens. Irene makes delicious gluten-free, dairy-free ready mix packs that can be used to bake a variety of yummy goodies. Here's Irene's story and the reason behind the development of Skye Blue Kitchens.

"I was 15 when my dad was diagnosed with coeliac disease. His symptoms were severe weight loss, lack of energy, bloating/gas, fatigue, diarrhoea.

"Mum cooked very plain meals to try and keep dad safe – meat, vegetables, potatoes (no sauces etc).  There was only one gluten free blend flour mix available and Mum used to buy this from the chemist.  She tried to make cookies and cakes without success.  I loved baking so I also tried to make a few cakes.  Everything had a chalk-like texture, had no taste and tended to be dry and crumbly. Invariably the baking went in the bin. Unsliced, white bread only was on prescription from the chemist along with one brand of biscuits. The only way Dad could manage to eat the bread was to toast it. 

"Fast forward a few years, and my son was struggling with weight loss, intense bloating/gas, lethargy, and constant fatigue. He was diagnosed with coeliac disease at the age of 21. His diagnosis gave me the drive to start the business because I wanted life to be as normal as possible for him.  I wanted him to still be able to eat his favourite baking treats (eg chocolate chip cookies) and that they would taste and look just like the real thing.

Irene and her son prior to his diagnosis.

Irene and her son prior to his diagnosis.

"Skye Blue Kitchens offers a range of versatile gluten-free cookie and cake mixes that let you create delicious treats every time. All of our mixes can be made dairy-free and also allow you to control the amount of added refined sugar. Each recipe gives a minimum amount of sugar for texture and taste. You really can't believe they're gluten-free!"

I've tried the Skye Blue Kitchens range (thanks Irene for the samples), and they're really yummy. Irene has kindly offered a gift basket which includes one of her mixes to give away on the blog. And you should totally enter this competition. All you have to do is tag a food allergy buddy on my Facebook post, and you're in the draw. Competition closes 3 March and is open to New Zealand residents only.

 

Want to purchase your own Skye Blue Kitchens goodies? You can buy them online or at Over the Moon in Cambridge.

Gluten-friendly and the oaty slice

Recently I went for a lunchtime stroll with a buddy of mine to check out a local Hamilton cafe. I wasn't really planning on getting anything to eat, but thought I'd have a look in the cabinet because you never know when you'll discover a new place to eat.

Clearly labelled 'GF' in the cabinet were two slices, Of course I assumed that GF meant gluten-free. Who wouldn't right? 

The goodies in question were oaty slices, so of course I asked the question "Um, these oaty slices, do they contain oats?" The answer was yes. Which prompted my next comment "But oats contain gluten." and the server explaining that the slices weren't gluten-free, they were "gluten-friendly."

Argh.

Oats aren't gluten-free. And the labelling in cafe 'GF' has always been known by the public to mean gluten-free. This is some high risk labelling because people who don't ask a lot of questions like nosey old me, might have assumed that they were oaty flavoured rather than containing oats, and a lot of newly diagnosed coeliacs don't know that oats are not considered to be gluten-free.

Just as a reminder, here's what Coeliac New Zealand have to say on the subject of oats. And in case, you think that's just an opinion, it's not. Under the Food Standards Australia New Zealand Food Standards Code, oats and their products are not permitted in foods that are labelled gluten free.

So what about the term 'gluten-friendy'? It's the first time I've come across it. But after doing some reading, I've discovered that overseas it's sneaking in as a way to describe food that's gluten-free-ish. Seems pretty misleading to me.

I wouldn't mind if a cafe or restaurant described something clearly as low gluten, but 'gluten-friendly' is confusing - is it gluten-free or not? Who knows? My advice would be to steer clear of anything labelled 'gluten-friendly' because it's not likely to be safe for gluteys.

Gluten-free food labelling in restaurants and cafes could do with improvement. There are a load of places in the Waikato using the label gluten-free on their meals, but very few of them are following safe gluten-free food handling practices. I don't believe that the owners are being deliberately misleading, I think there's just a general low awareness of what gluten-free means, and what steps are required to ensure meals are prepared, cooked and handled to remain gluten-free. 

This is not an insignificant problem. The short-term and long-term health impact on gluteys ingesting gluten can be painful, and even dangerous.

So be careful out there guys. Continue to ask questions, avoid the oats, and look out for that dodgy 'gluten-friendly' labelling.

p.s. if you're a cafe or restaurant owner who wants to provide gluten-free food, Coeliac New Zealand are worth having a chat to. They offer a dining out programme to support the hospitality and catering industry by training staff on how to ensure gluten-free food is produced and served safely.

p.p.s. Since my visit to the cafe, they've relabelled their 'GF' products as 'Gluten friendly'. Still not good enough, but slightly better than their earlier set up.

Glutey Tales: Jackie's story

Jackie has had coeliac symptoms since birth but was only diagnosed as an adult. Here's her story ...

"I was incredibly sick from birth with doctors taking me off different foods to try and find out what was wrong.  My mother used to boil bones twice and sieve them for me to drink, or find goats milk (which was hard to come by 60 years ago).  I remember being at kindergarten and having to go into the office to eat because I couldn’t be around the other children or because I had to eat different food.  They never found what was wrong. They did try me off wheat for three weeks which obviously wasn’t enough.  That was hard for Mum.  I was eating a rye bread in cracker form at one stage."

The health issues continued into adult for Jackie: "My symptoms were aching joints, tiredness, loose bowel motions, bloating etc. I was getting so tired I couldn't stand at the door to say goodbye to people (when I was about 35 to 40) and was having acupuncture for a five year chronic sinus infection when the acupuncturist suggested I go to a doctor/alternate in Ham East.  Anyway he said that's [coeliac disease] what it was and to go off all gluten."

"I only had a blood test and wasn't told about the biopsy until I saw a regular doctor a year after I'd been on a gluten-free diet. When I had the biopsy I'd only been back on gluten for about three weeks and I told the specialist I wasn't sick enough yet (the nurses agreed with me) but he went ahead with it anyway and it came back negative.  I was crying when I left him, stopped at the door and said "What do I do now?", he answered, "go off all gluten".
 
No one seemed to know much about coeliac disease when Jackie was diagnosed  "I was only told to google it - not helpful for a person who wasn't that good with computers.   I didn't really know what to eat and kept losing weight getting down to 7 stone and dropping still, so I ate more of everything that I knew was alright until I went up to 9 stone (which the doctor said was my right weight) then leveled out at 8 1/2 stone after a year or two and stayed there ever since."
 
"Initially there was some bread available but it was pretty awful, there were g/f flours but they didn’t work well either.  A friend started playing around with recipes and used me for her guinea pig with biscuits, bread, pikelets, pastry and cakes.  She started up The Gluten Free Goodies Company and then sold it years later.

"I ate lots of rice, fruit, vegetables and plain meat and took my own food everywhere I went until products were labelled better.  Then I got into eating too much in the way of biscuits, cake, processed food - I have tried to wean myself off those now (partly because my sister and father have diabetes) but I'm not always successful. I feel ripped off sometimes with not being able to eat what other people are eating and would love to tuck into some fresh normal bread. [However], I think there is too much choice now and so much of it not good for us."

Jackie's advice for the newly diagnosed:
Don't let yourself lose all that weight, still eat sensibly with not too much processed food because it doesn't make you feel better.  I found g/f breads bloat me and give me diarrhea, I think because of the guar gum or something similar, so don't have very much of that.

Thanks for sharing your story Jackie!