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!

Exploration of the eek kind

Warning: This is not nice. It's gross. It's about poop and more and you might just like to skip this one. You have been warned.

I'm meant to be writing my column for next month's Fitness Journal (by the way, check out August's column on gut health) ... but instead, I'm thinking about how much time I'm going to be spending on the toilet next Sunday.

Yup that sounds like fun, I know.

Despite my workmates referring to it as a "holiday" (smart arses). The time I'm taking off work on the week of the 17th is NOT a freakin' holiday. 

You see, despite being very careful with my diet (gluten free, dairy free, low fodmaps, low sugar, capsicum free and tomato free) and doing gut healing work, I still have gut pain, bloating and heartburn. It's not fun. I also seem to be reacting to more and more foods lately. 

In just over a week's time I'm booked in for an endoscopy and colonoscopy. Basically this involves being drugged (but not in a 'woah let's go party till 3am' kind of way), and having a camera take a look at things. The cameras will be checking the digestive system, large bowel, colon and more, and there may be sample taking involved. Wow I can't wait #sarcasm.

Prepping for this procedure is not something I'm looking forward to. 

In the lead up to the main event (like how I'm making this seem like an MMA match?), there will be a lot of poop. No food for nearly 24 hours, plus four litres of nasty stuff called 'klean prep'. Klean prep, is designed to clean you out. Thank goodness I have that toilet paper obsession so I won't be running out of TP at an inopportune moment. However, I won't be leaving the house either.

A letter arrived in the mail warning me that I needed to be driven home by someone after the procedure (apparently no one likes a wasted driver), and then supervised. There's also some very clear instructions about not making any serious decisions during this time. I've asked my husband to confiscate my cell phone to prevent me making inappropriate social media updates post-procedure, because I can totally see me in my half-baked state thinking that a nice butt shot would be relevant and interesting to my readers.

So yeah, this is not a holiday I'm looking forward to. Still, I'm glad to be getting things checked out!

It's possible that there's nothing actually wrong, but stomach pain, changes in your stools, (or poos as I like to call them), dark poop, extra light poop, runny poop, heart burn, reflux or any other gut symptoms should not be ignored. If you're experiencing any of these problems, you should go to the doctor and get it checked out. Take action early, cos it could save your life.

Tears, tantrums and a lack of tiaras

When you’re first diagnosed with food allergies it usually comes as a shock. There’s an initial ‘Ah yay, that’s what’s wrong with me’ moment, but this is swiftly followed by ‘holy crap, what am I going to eat?!!’

You can see your life stretching before you with endless servings of sawdust and parboiled eggplant as your only source of nourishment.

Like a beauty pageant there will be tears and tantrums, but sadly there will be no tiaras or pretty sashes for having a great smile or looking good in a bikini.

Eventually though, you’ll just have to pull yourself together and find a way to eat that nourishes you and doesn’t depress you with it extreme blandness.

Diagnosis means you have to change your life in some very significant ways – what you eat and where you eat – but it shouldn’t stop you from enjoying food.

And here’s something you’ve got to learn really fast: How to cook.

<Sigh>

I hate cooking.

But I LOVE eating.

Learning to cook means you can eat safely, save heaps of money on over-processed and pricey allergy-free food, and ensure you get maximum nutrition in your diet.

So how do you learn to cook in an allergy-safe way?

  • Look to your community. There are people everywhere with food allergies, and a lot of them are online so even if you don’t know any other allergy-free people personally, you can easily connect to others with similar dietary issues. Get in touch and ask for advice – it’ll save you time and tears.
  • Use the tools - Google, Pinterest and YouTube – there are free recipes and how-to videos all over internet land.
  • Join a cooking class – there are several specialist chefs who run classes in allergy-free cooking – I’ve listed a few local ones at the bottom of this post.
  • Buy an allergy-free cookbook. You’ll need it – often you can’t just simply substitute one ingredient for another allergy-free one, you’ll have to tinker with the amounts and even add in extra bits and pieces to make the recipes work. Cookbooks help!

Most importantly, don’t give up. It’s normal to make mistakes and produce some terrible food when you’re starting out, but it gets easier honestly.

As for me? I still hate cooking, and I’m not very good at it, but I’m getting better.

Resources:

Gluten and dairy-free Hamilton Facebook group

Waikato Food Allergies Facebook group

Nadia Lim – chef who often posts allergy-free recipes

Jimmy Boswell  – the Gluten Free Chef – he runs cooking classes for gluten-free and other allergy-free foods

My Darling Lemon Thyme – chef who posts a lot of allergy-free recipes

Sue Shepherd – writer of fantastic allergy-free cookbooks (including fodmaps)

Gluten Free Made Easy – cooking school for gluten-free people

Children with food allergies ... part one

Something that I've been thinking about lately is babies. Cute, pudgy cheeked munchkins with my curls and outgoing nature, and my husband’s long eyelashes, gingery colouring, and sharp sense of humour. 

Our children will be beautiful, smart, funny and all round great girls/guys <I’m already biased in their favour>.

Being of the glutey persuasion, something we need to plan for is the likelihood of our children having food allergies. 

There’s a bit of debate about allergies and whether they are caused by genetic or environmental factors, or a combination of both. One thing that the research does show though is that parents with food allergies are more likely to have children with food allergies.

Being a carrier of the Coeliac marker gene, chances are that our children will also be Coeliacs or at least carry the gene.

With that in mind, I've been talking to parents of allergic children to hear their story – how they manage on a day-to-day basis and their pathway to diagnosis. There’s lots to talk about, so I’ll spread the posts over a few weeks.

Anyway, let’s start.

How do you know if your child has food allergies or intolerances?

The symptoms of a food allergy do not always appear to be gut related on the surface, which can make diagnosis really tricky. Symptoms vary from mild to severe, even life-threatening.

Cale - happy and healthy on his allergy-free diet

Mother of two, Jenaya hadn't had any experience with food allergies until the birth of her youngest son “Cale was unsettled pretty much from birth.  He was constantly squirming in pain, would scream at night time with stomach cramps/pains.  Had chronic wind problems. Irregular bowel motions and ‘Allergic shiners’ all the time.  

"There were obvious signs of discomfort during day and night and he developed a rash on his face.  Once I had introduced formula (the cows milk protein kind) he constantly had bronchiolitis and chest/throat infections.” Cale was eventually diagnosed with food intolerances to gluten, egg, dairy, soy and food colourings.

Catherine has two children with severe food allergies, their symptoms were quite different to those described by Jenaya, and could be life threatening. “They start coughing as their throat closes, intense hives and itching, swelling and redness occurs.” This response to food is typical of an anaphylactic reaction, which requires close monitoring and use of an epi-pen to prevent asphyxiation.

Not sure if your child has a problem with food? Here’s a short list of just some of the signs that your child could have an allergy:

  • Hives or welts
  • Flushed skin or rash
  • Face, tongue, or lip swelling
  • Vomiting and/or diarrhoea
  • Coughing or wheezing
  • Difficulty breathing
  • Loss of consciousness
  • Drop in blood pressure
  • Urinary infections
  • Eczema
  • Itchy mouth or ear canal
  • Odd taste in mouth

And more …

Take care out there folks, look after your children’s health as well as your own!

Note: The symptoms described above can also be signs of other health issues, so make sure you see a pediatrician rather than self-diagnosing, and don’t adjust your child’s diet without talking to a medical professional.

References:

http://www.foodallergy.org/symptoms 

http://www.babycenter.com/0_food-allergies_12409.bc

http://www.ncbi.nlm.nih.gov/pubmed/16476197

http://kidshealth.org/parent/medical/allergies/allergy.html

http://www.celiaccentral.org/riskfactors/