Mondays

Last month we went to Auckland for a night (husband to work, me to hang out with my cousin). As usual I did a whole heap of Facebook stalking and advice seeking about where to eat long before we left Hamilton. 

And that's how I found my way to Mondays. Based in New North Road, down a steep driveway, you'll find this amazing cafe serving whole foods, that are both delicious and food allergy friendly.

The whole kitchen is gluten-free, there's no processed food and no refined sugar. You'd think it would be all dust on a log type food, but actually no, it was delicious!

Here's what I had:

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That's home-made gluten-free bread, it's crunchy, nibbly and nutty tasting; poached eggs, avocado with some kind of sprinkled yum, and leafy greens. So freakin' tasty. On the side you can see lotus chips. Now those were an unexpected treat ... I'm not sure where you buy lotus root from but if you can get it near you, slice it up and fry it because #yum.

Great service, great food and a lovely spot to hang out in the sun. Go check them out!

Glutey tales: Lila's story

We all remember what it's like to be a teenager. The stresses of trying to fit in while also trying to find your own place in the world ...

If you were given a choice of timing, I don't think many people would choose to be a teenager when they were diagnosed with coeliac disease. But you don't really get to choose do you? Have a read of Lila's story in part two of glutey tales ...

Lila's Story

Diagnosis:
My diagnosis was unusual in that I didn't think I was ill at the time and it was such a rare thing to test for 21 years ago. I was 14 at the time and went to my boarding school doctor for something completely unrelated. I was asymptomatic, aside from small stature and didn't really appreciate a strange doctor telling me he thought there was something wrong with me. At 14 years old, being different was not something I wanted to encourage! But he did the tests and I got the biopsy and eventually my mum explained to me there was this stuff called gluten in wheat and I wasn't allowed to eat it anymore. 
 
No one I knew had ever heard of the word gluten before, let alone understand what foods it was in. I could get Bakels flour and Orgran pasta from the hospital but it didn't cook up well and the bread was awful despite my mum's many attempts in the breadmaker. Because of the low awareness and because I didn't react severely I think it took me a long long time to fully understand all the places gluten was hidden. Looking back many of the things I thought were gluten free probably contained traces & contamination (like flavoured corn chips). I wasn't aware of the importance of things like separate toasters & chopping boards. 
 
Living in denial
I spent 7 years in denial. I thought I could grow out of it and because I didn't really react to gluten exposure (not that I was willing to admit anyway) I could kind of get away with it. As a teenager I just wanted to fit in and eat toast after school with my friends, so I did. 

Because of the lack of knowledge and awareness, there was no-one really around to point out the seriousness of what I was ignoring. Strangely it was an off-hand comment from an acquaintance when I was 21 that made me stop and think about what I was doing. When I started to finally take it seriously I spent a hellish 6-months making the transition back to being gluten-free, fighting bread cravings and all-round general grumpiness. 

Advice for newly diagnosed coeliacs
Be gentle with yourself. It's a lot to take in all at once. Accept that you won't get it right all the time at the start and sometimes you'll make mistakes.  But don't be like me and stay in denial. You have it much easier these days. It's easy to find information and support and recipes. The paleo movement has made being gluten free more cool and trendy. It also brings with it a few myths and misconceptions and gluten-free dieters who can make it harder for those who need to be seriously gluten free but I choose to put my attention on the positives rather than negatives. Choose to be an advocate and educator rather than a complainer when somethings not quite 100% gluten-free. 

Also don't rely on processed food products labelled gluten free. Just because it says it's gluten free doesn't mean it's healthy. Stick to wholefoods - did you realise there's only about 5 wholefoods that actually contain gluten? The rest you can go to town on so learn to cook, it's easy, just make Pinterest your new best friend and be open to trying and discovering new foods. Learn from your cooking failures and enjoy the journey anyway. 

As you might be able to tell, these days I'm a big believer in focusing on the positives rather than the negatives. I'm grateful that I was diagnosed when I was, even though I didn't appreciate it much at the time. I have no doubt that those invisible symptoms would have gotten worse given more time and stress on my body. 

I don't want to be one of those people who reminisce about the bad old days and tell you how much easier you have today because it can be a lot to take in and deal with when it happens to you whether it was last week or 20 years ago. However, there are now heaps of resources available to you so if you're ever struggling and looking for support from people who understand all you have to do is reach out and ask for help. 

Fish Punk

I've mentioned before how much I LOOOOOOVEEE hot chips. MMMM ... 

But they're kind of hard to find, which is odd since potatoes are gluten-free. The problem however is two-fold: cross-contamination from gluteny products in the cooking oil, and chips that are more than just potato and oil (e.g. flavourings and coatings).

Recently while driving home from work I noticed a new kid on the block - Fish Punk located on Grey Street, Hamilton. This is not your average takeaways. The outside is decorated street-art style with spray paint branding, and corrugated iron. Once you step in you're greeted by the entire staff hollering "Fish Punk!" at you. It sounds a bit scary, but it feels like a big friendly hug hello.

The menu for gluteys is extensive, and if you explain your allergy requirements they're super careful with handling and cooking.  

After trying yoga for the first time recently, I treated us to dinner (you can dine-in, or takeaway - I chose takeaway because #Television). And, for the first time in years I had a burger and chips. OMG a burger! It was amazing! And I can happily report, there were no food allergy issues - hoorah! My husband had a normal person burger and also reported deliciousness.

Tonight we're going again and I'm not gonna lie, I've been thinking about dinner ALL day. ALLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLL ... day.

Check out the noms for yourself.

 

 

 

Glutey tales: Barbara's story

Coeliac disease has been around a looooong time, it's not a new disease. There are even reports of coeliac disease dating back to Roman times. Yup, 2000 years ago.

Even so, we're still I believe very much at the beginnings of our understanding of coeliac disease, and it's lesser medically-accepted buddy gluten intolerance.

I've been on a gluten-free diet for about 15 years now. And to start with it was really hard to find gluten-free food. My sister and I (also a glutey) spent endless hours trying to bake bread and make treats with varying results. 

I can still remember the two places in the Waikato where we could find gluten-free food. 

1. Bin Inn in Te Awamutu (still a fantastic place to shop by the way)

2. Cafe Strata - at the time based in Casabella Lane, Hamilton (now in the process of moving to Waihi Beach). When mum and I discovered Cafe Strata we were SOOOO excited. And since we were total newbies to gluten-free, mum asked them about their gluten-free menu commenting that we had an eating disorder so needed to eat gluten-free (haha!)

There was at the time very little knowledge of what gluten-free is, or what coeliac disease was about.

Recently I talked to a group of long-term gluteys about their experiences. I'm blown away by how similar and yet how different their stories are. Over the next few weeks I'll share their stories. I'd love to hear your story - post a comment below if you like or drop me an email (hello@gluteygirl.com)

For today, here's Barbara's story, which highlights to me the impact coeliac disease has on fertility and child birth rate.

Barbara's Story

Diagnosis:

In 1992, I was 39 and I went to my doctor, again! He said if I hadn’t got pregnant by now it wasn’t going to happen and I needed to move on. He said the ongoing diarrhoea could be a problem with wheat.  I said I would go without for a month and see if I felt better. I didn’t feel any better, but later found out I was pregnant!

I struggled through the pregnancy with low body weight, migraines and very tired. I did nothing to get ready for the baby as I was too tired so my mother jumped in there.  (I had told her a baby was not going to happen, so when I found out, I bought white wool and a baby pattern and gave it to her for her birthday, she was puzzled till she clicked and then it was all screams and excitement!) My baby was born three weeks early and only 1.8 kg. We had to stay in hospital for three weeks till she got to 2 kg. I had a lot of bleeding, very low iron and trouble giving enough milk. But we went home and I struggled on, till I couldn’t even walk up a flight of stairs without stopping halfway. 18 months later, I went back to the doctor and after some false starts, when showing her my psoriasis she was shocked at how thin my legs were and sent me off to a specialist. I got a positive biopsy, but they didn’t tell us it cured your infertility and next minute I was pregnant again!  

This time I was on a gluten free diet and healthy and the baby was 3.4 k, (three weeks late). It was a totally different experience. I tell people who feel sorry for me on the diet, that my baby on a diet with bread was only 1.8 kg and gluten free my baby was 3.4 kg and that is the difference in the quality of your life. If someone had said to me that you can’t have a baby because you’re eating bread, I would have thought they were mad. In hindsight, I have always had it, even as a child I had pea stick legs, pale and tired. I was good at sports but could never run more than 20 minutes. When I was in my early thirties I lost about 4 or 5 kgs and after that I was really just in survival mode. This is the most common age for coeliacs to be diagnosed.

Food availability

I knew nothing about a gluten free diet in the early nineties, I saw a dietitian as part of my diagnosis but learnt a lot from the internet and books I found in alternative bookstores. My relatives knew nothing and the food at family get together’s was a mission, so I just ate what I took.  

There was a very limited range in the health food shops. The bread was terrible, so I ate more rice. Going away for the day meant yoghurt and hot chips for lunch.  I lived in a small town so the options were very limited. I bought a Kenwood mixer and made my own everything; bread, muffins cakes, fish batter, even doughnuts. It even has a grain mill, which I used to make brown rice and pea flours. I have a collection of about 20 gluten free cookbooks. It had a sausage mill and I even made sausages. My boy was put on a gluten-free diet for a while so that was the incentive to do a lot of things I would have gone without. We had birthday parties for him, all gluten free. You could buy an ice cream birthday cake. Other kid’s parties would have nothing for him to eat, so I sent him with a plate of his favourite treat. When eating out you had meat and 3 veg; steak and chips, bar-b-ques were good, lamb chop and salad.

Any advice for newly diagnosed coeliacs?

Hang in there, you can’t just remove the toxin, you have to heal and healing takes time and energy. You will wake up in the morning and feel good! Other medical conditions may improve, I have never had a migraine since I have been on the diet and my psoriasis is now very mild. This is probably because I am now healthy because my stomach is functioning, rather than the diet itself. Also your brain will improve, complicated things I used to struggle with became much easier. If you have no bread, learn to whip up some pikelets or pancakes. They are quick and easy and if you’re going away just take the mix with you in a zip lock bag for the number of days you need and make it up at your destination. Also you can make cake in a cup, when there is no dessert for you. I have met some older coeliac’s who have been diagnosed late in life and they are bitter about most of their life having been a struggle and the doctors failure to pick it up. But that is ancient history and you have to move on and enjoy what you have now, good health!

Why does my tummy still hurt?

I'm going to be real here. A lot of coeliacs I know, still have stomach problems despite being on a strictly gluten-free diet. 

There seems to be this story out there that once you cut out gluten, everything will be okay. You'll suddenly be healthy, happy and have more energy than you can shake a stick at. 

For those people who have had this happy outcome - I'm so happy for you, and I'm also insanely jealous.

For everyone else who still has stomach problems - I feel ya.

What's going on?

A few things we know, and a lot of stuff we don't it turns out.

1. Healing time

If you're new to gluten-free life, you might think you'll receive instant healing from a gluten-free diet. Nope. It takes time, in fact, it can take an adult up to two years to recover after stopping eating gluten.

2. Refractory coeliac disease

Some people don't heal (refractory coeliac disease) despite eating a strict-gluten free diet. There's a range of different percentages quoted around the internet, so I can't tell you what the exact percentage is. But mostly what I've read is that it's rare. The good news is that there are some treatments available - e.g. "drug treatments may be needed such as steroids, immunosuppressive drugs, chemotherapy or a combination of these." reference here.

3. Irritable bowel syndrome

I think of IBS (irritable bowel syndrome) as coeliac disease's nasty little sister. IBS is literally a pain in the gut. Symptoms include diarrhea and/or constipation, stomach pain and bloating. A gastro-enterologist is the place to visit if you think you have IBS - they can test for it, and will often recommend a low fodmap diet as the first step in management of the condition. A lot of people with Coeliac disease also have IBS #ohjoy.

4. Leaky gut

Leaky Gut Syndrome is something you've probably heard mentioned a lot recently. In mainstream medicine there's a lot of debate about what it is, what causes it and how to treat it. There are plenty of gut healing diets and resources online.  It's hard work sticking to a gut healing diet, but for some people it makes a huge difference to their health. I'd recommend talking to your doctor before changing your diet.

5. Secret gluten

Here's something to think about - are you 100% gluten-free? Cross-contamination can easily occur and gluten can sneak into your diet causing a LOTTTTT of pain. Read more about avoiding cross-contamination here.

6. Something else?

There could be another reason for your sore tummy other than gluten. If you're still experiencing pain, please visit your doctor and try to get referred to a specialist. There are a multitude of reasons why you could be experiencing pain - some minor and some very serious, so try and avoid self-diagnosis or removing foods from your diet without consulting a specialist first.

 

Final words

After a few years of writing my blog and talking to other coeliacs, I've noticed that just about all coeliacs still have stomach pain intermittently despite going gluten-free. But going gluten-free on it's own doesn't seem to be the magic bullet to removing stomach issues all on it's own.

So why does my tummy still hurt? I have a feeling we'll be seeing more research over the next few years that helps find answers to this question. In the meantime, what can you do? Don't ignore it, see your doctor, visit a specialist, and see what they say; stick to a gluten-free diet; and fuel yourself with good quality food, limiting the processed food and eating plenty of nutrient-rich whole foods.

What the hell is that smell? (umm ...)

I once had a boss who after exiting the bathroom made the comment "Geez, can't some people just put a bung in it until they get home?"

Yup, someone had done a real stinker in there. And it wasn't me ... this time.

An IBS friend and I were cracking up about this recently, because clearly my boss did not have gut issues.

If you've got IBS, food allergies, or gut issues you often don't have the privilege of planning when you can poop, and it's not always a nice smelling, delicate little poop either. For some IBS people it's hard to even do a poop. Which is worse? Constipation of diarrhea? I'd pick diarrhea, but really, neither is a good option.

The truth of the matter is that sometimes as a food intolerant/IBS person you're going to be the one stuck in a cubicle at work inadvertently noisily farting (oh god, the shame), while your stomach noisily evacuates, and you're holding back the groan of pain as your stomach spasms uncontrollably. This is not fun. It's painful and also really embarrassing. And sometimes it takes ages until you can leave the cubicle.

We're hoping that if you're in the cubicle next door you'll pretend you didn't hear us/smell us and leave quickly so that we can stop trying to hold in the fart and finish what we need to do in peace.

Please don't be there when we exit the cubicle, we're keen to wash our hands and escape as quickly as possible so no one ties us back to the scene of the crime. Also, please pretend not to notice when you see us back there again ten minutes later. Sometimes it takes a while to um, sort things out.

I think I'll file this under the hashtags #noonewantstotalkaboutpoop #embarrassingpoopfacts and #shithappens