Coeliac Awareness Week- My story so far

Coeliac Awareness Week is this week (16th-22nd May). The week aims to shine a light on coeliac disease by spreading the word about getting tested, eating well - by providing information about food and ingredients, and general awareness about coeliac disease and what that means for those diagnosed and their support people.

This Coeliac Awareness Week marks the launch of the Gluten Free Accreditation 'Dining Out Programme' for cafes, restaurants and other food outlets. Businesses will only become accredited after successfully completing a training program and independent audit. The aim is to open up the gluten free dining out experiences for coeliacs by providing this extra level of assurance that their gluten free food is safe to eat.

I was only diagnosed with Coeliac Disease in January of this year after being hospitalised for complications following my hysterectomy. While I was there, the doctors took some bloods and were concerned about my low levels of iron, B12, Vitamin D and my overall undernourishment. As someone who eats healthily, I was surprised that all of my levels were low. A dietitian referral was made whilst I was in hospital, and a lovely lady came to see me. Once we had gone over what I usually eat, she asked me about my family history. I do have uncles and a grandfather with Coeliac Disease already, but six years ago the dietitian I saw for my suspected IBS after a normal colonoscopy had suggested a low FODMAP diet instead of specifically gluten free. However, this time my blood tests included an antibody test specifically for Coeliac Disease, and my results came back highly positive.

By this time I was luckily out of hospital, so I went to see a private gastroenterologist. He performed a biopsy during a gastroscopy, and this came back with a positive result.

A lot of my symptoms had been written off in the past as being IBS, related to my endometriosis or just me being sensitive to other foods such as dried fruit or onions. However, once my endometriosis was not a factor any more after my hysterectomy, the symptoms continued and I did have a sneaking suspicion that something was wrong. Getting an official diagnosis was actually a relief for me, as I now have a clear plan for the future.

Some of the symptoms I experienced were:

• Loss of interest in everyday things
• Anxiety
• Breast tenderness
• Heavy, painful periods
• Brittle nails
• Bruising easily
• Skin rashes
• Anemia
• Low levels of B12, Vitamin D and calcium
• Acid reflux
• Bloating
• Constipation and diarrhea
• Nausea
• Stomach pain
• Back pain
• Dizziness
• Hair Loss (I have had bald patches since I was six due to pseudopelade)
• Migraines 

As you can see, these symptoms separately don't point to one common denominator, and it was often put down to being a mum, stress, my other health conditions or simply because I was too busy to investigate further. My anemia in particular had been an issue since the birth of my second son in 2012, but was always put down to my heavy periods and never investigated further. The list of possible symptoms related to coeliac disease is huge, and I urge anyone experiencing these symptoms to have a full work up done by their GP.

The biggest struggle I have had so far is the misconception about coeliac disease. Coeliac disease is a permanent, autoimmune disorder caused by a reaction to gluten which is found in wheat, barley, rye and oats. Gluten can damage my villi, which is the lining of my bowel, which can end up being very serious if left untreated. It is not imply a case of me getting a sore stomach from eating some bread, or being a fussy eater. It is by no means an easy diet, and some comments I have had are quite hurtful as I did not choose to have this. Yes, gluten containing sauces will irritate me as they do not bake off in the oven, and yes one slice of bread will hurt me.

I love this discussion from a reader on Gluten Free Dude's site that sums up perfectly how I feel some days!

Dear Friends, Family, and acquaintances:

• I am not eating gluten free as part of a fad, or because the latest celebrity has decided to jump on the G-free bandwagon.
• I am not eating gluten free to annoy you, inconvenience you or to make things difficult when we go out to eat.
• I am not eating gluten free to be the center of attention or to put a damper on your party.
• I am not eating gluten free to pay outrageous prices for a single cookie, cupcake, or a tiny little pizza.
• I am not eating gluten free to pay a lot more for a little bag of gluten free flour.
• I am not eating gluten free to worry about what I can eat when I go out to eat.
• I am not eating gluten free because I love to analyze every ingredient on every item I pick up to purchase.
• I am eating gluten free because that little protein that you cannot see in your muffin, cookie, cake, pie, beer, pizza, soup, and yes, even your soy sauce makes me ill.
• I am eating gluten free because that little protein hurts my stomach, my joints, my muscles and yes, even my brain.
• I am eating gluten free because I have a disease.

If you have any questions, I would love to help- please comment below and I will respond. In the meantime, the Coeliac New Zealand has some great resources on what to do if you are diagnosed with Coeliac Disease, and there is a huge community within New Zealand that I have found helpful. 

Ten days of tears

You may have been wondering where I have been these last couple of weeks. I had grand plans to start 2016 with a bang, and had so many ideas and blog posts to share with you after recovering from my surgery in November.  All of my plans changed though, on the fifth day of 2016.

Early Tuesday morning, about 1:15am, I began to experience an awful pain on the right side of my abdomen. This came on suddenly, and I was in absolute agony. I ended up in the bathroom for four hours, doubled over in pain and thinking I had been hit with a stomach bug. I Googled my symptoms and joked with my husband that the results said appendicitis, but I was sure that was unlikely.

I managed to slowly walk into my doctor's office at 10:45am. He took one look at me and concern flitted across his face. As he pressed into my abdomen, I went as white as a sheet. His next words were "I think we should get you to hospital." I was then hooked up to an IV drip, given fluids, and taken away via ambulance. As I was taken away, I managed one last wave to my boys and had no idea what was to come.

I arrived at the Emergency Department and was given a lot of pain relief, then saw three doctors. I couldn't believe it when they said the symptoms were in keeping with appendicitis, but because of my recent surgery there was also an element of unknown. I was taken to a pre-surgery ward and admitted overnight. My boys and husband came in briefly to bring me some supplies, and as I said goodbye I figured that we would have an answer that night as to what was happening. My CT scan happened at 9pm and the doctors came to see me at midnight. The CT scan images were unclear, and so an ultrasound scan was booked for the morning. Cue the first lot of tears due to the pain and the fact that I wouldn't have an answer until the morning.

The tears were still coming thick and fast before my ultrasound, as I was scared and worried. Throughout the ultrasound, I was in a lot of pain and the images were still unclear. There was talk of a possible infection as the result of my hysterectomy in November, but appendicitis had not been ruled out. The main issue was my blood test results- I had a CRP (a level of inflammation) of 180, when the normal range is 1-20. This indicated that something was definitely going on!

A few different doctors had seen me by that stage, and the decision was made to take me to surgery to have a look at what was happening inside. More tears came as I had to accept the fact that one of my greatest fears, going under general anesthetic, was going to happen again. However, about twenty minutes before I was due to go into theatre, the Women's Hospital team decided to take over my care as they were convinced that my pain had something to do with my recent surgery.

Off I went to another part of the hospital, and proceeded to have three days of intravenous antibiotics for a post-operative infection. To make things worse, my right ovary also decided to have a burst cyst, just to add extra pain into the mix. I cried because I was in pain, I cried because I missed the Weird Al concert date night with my husband, I cried because my children asked when I was coming home. I finally got discharged on Saturday afternoon, and crawled into my own bed at home.

However, my problems were not over yet. I spent all of Sunday doubled up in pain as the cyst on my left ovary then decided to burst as well- I had been warned of this happening as it was picked up on the ultrasound. My pillow and a heat pack were my best friends throughout the day.

Monday morning saw me at my GP again, who suggested repeat bloods and another ultrasound as I was still sore. Off I went to the radiologist, who spent a good hour looking at my internal organs. I knew something was up when the senior radiologist was asked to look at my images, who then called my GP. A large mass was showing up on the scan, and the best course of action was to send me straight back to hospital. I burst into tears at the thought of going back, but there was nothing else I could do.

I was admitted again on Monday night, after one and a half days of freedom, and I remained in hospital until Friday evening. The days passed very slowly as I was attached to more IV antibiotics, which dripped into me every 8 and 12 hours, and with no TV and limited visiting hours, I felt very isolated and alone. I cannot fault the hospital staff, who treated me with extreme kindness and did everything they could, but being in hospital is never fun and I did have a few weepy moments as I wondered whether or not I would be OK or if I would have to end up with more surgery.

My emotions were definitely running high, and I really appreciated the visits, flowers and kind words sent from friends and family. It was hard watching my roommates come and go, whilst I stayed attached to machines and got to know all the nurses.

Over time, my blood test results looked more promising and the visits from other medical teams meant that I was thoroughly investigated. I even had tests for Coeliac disease (which has come back positive!) and saw a lovely physiotherapist as my hips were very sore due to the hospital beds.

My wonderful family rallied around me, and as I fretted over my boys they were having a wonderful time with extended family. I cried as I was missing out on those moments with them, and their hospital visits were short and sweet since hospitals are rather boring for little boys. A lovely text from one of my good friends sent me into floods of tears as she reminded me that I am a good mother, as I certainly didn't feel like it.

The doctors were still not sure what was going on with my symptoms, and so on Friday I had another blood test plus a repeat ultrasound. These both came back normal- I was finally improving and feeling a lot better. The decision was then made that I could be discharged- after nine days total in hospital this was wonderful news and I could not wait to get back to my family and into my own bed.

This was definitely not the way I had planned to start my 2016, and I have missed out on a lot of plans including the Weird Al concert, a trip to Queenstown and taking my boys on a day trip to the beach. I am so grateful, not only to my friends and family, but also to my GP, the St John ambulance staff, and all of the doctors and nurses who were involved in my care.

As I move forward with a new medical diagnosis and a tendency for naps, I am grateful that this medical blip was only a small part of the year. I should be able to move forward from this, and now I know to listen to my body and know when I am doing too much. Part of moving forward is telling this story to get it out of my system, and I also hope to encourage women to listen to their bodies and seek an answer if something doesn't feel right. I was worried that my pain would just be disregarded or that I was overreacting, and I am so glad that my GP and the hospital staff took me seriously and did everything they could to help me.

Let's hope the rest of my 2016 is uneventful, and I get to share new activities, recipes and craft tutorials with you all!

Appreciating my Family for NFCM

As some of you may be aware, I recently took a short break from my blogging to focus on my health. I had laparoscopic surgery for endometriosis removal in January, where steps were also taken to treat some of my symptoms. However, these symptoms continued, and in some cases worsened, and the only other option was a major surgical procedure. The incidental discovery of a rare rectus sheath hernia was also found, and so it was agreed that I have the hernia repair and a hysterectomy at the same time, requiring a full cut along my abdomen.

This was major surgery, and I had my doubts. I was worried that I would be away from my boys for so long, how my recovery would be, and there were also the fears of going under general anesthetic. I am no stranger to surgeries, having had major hip surgeries as well as three other laparoscopies, but each time I still get nervous. However, my symptoms had forced me to stop exercising, and some days I couldn't even leave the house. For two weeks out of every month I was in constant pain, and when I couldn't even walk my son to school and back I knew that something had to be done. The surgery was booked in, and I started to prepare for my hospital stay.

You can imagine that this is not something I can recover from overnight, and in fact I spent an entire week in hospital recuperating. Throughout this time, my family pulled together to help with meals, looking after my two boys and making sure that I still had everything I needed to be comfortable.



November is National Family Caregiver Month, and I wanted to highlight how important family can be when you are dealing with illness. I am so grateful to my husband for being the parent at home for the next few weeks, and he did an amazing job while I was in hospital. He still is doing most of the work around the house as well as helping with the boys, and I cannot give him enough credit.

My parents and in-laws have also been amazing, helping with transport, meals and housework. Sometimes just having company is enough, and a cup of tea with my mum is guaranteed to get me to forget about my pain for a while. My mother-in-law especially has been so helpful, taking time away from her day to help out and make sure I have everything I need.

I am taking each day as it comes, and hope to be back on my feet by Christmas!

I am truly amazed at the amount of people who look after their spouses, parents or other family members long-term. Six weeks seems like a long time for me, but those who do it every day are often under-appreciated and may not have the help of anyone else nearby. I am lucky in that I will recover with time, whereas others may have to deal with a lifelong illness or a sudden diagnosis that brings about major change to normal life.

I also wanted to share the story of Heather Von St. James, who made me aware of National Family Caregiver Month. This woman is so strong, and her health journey had me in tears. If you have a moment, I encourage you to read her story and find out why she is now fighting to change the law. Her journey with mesothelioma is a tough one, and she now devotes her time to advocating for those affected by this devastating cancer and helping inform others of the dangers of asbestos. This is particularly poignant here in Christchurch, where a lot of houses are being renovated or demolished without thoughts for the dangers of asbestos.

My blogging will be back to normal this week, as I can at least sit down and type now without being in pain. Feel free to come say hi on Facebook or Instagram!

Fueling your Workout

As a busy mum, nutrition is important to me, especially before, during and after workouts. If I eat the wrong things or do not stay hydrated, I can end up with stomach cramps, lack of energy and even the dreaded runners' belly. Most of my exercising happens early in the morning. I find it hard to workout on an empty stomach, but I do need to eat an hour in advance or I do not feel my best with my stomach sloshing around while I am moving. 

If I am going for a run, I start with protein. My two favourite go-to breakfasts before a workout are a Power Shake or a Banana Omelette. 

Power Shake:

200mL coconut milk

1 scoop protein powder (like one of these)

1/2 cup frozen blueberries

1/4 cup frozen chopped spinach

1 small banana

1 tablespoon ground flaxseed

1 tablespoon ground chia seeds

1/2 teaspoon cinnamon

Blend together and drink. 

Banana Omelette
1 banana

2 eggs, lightly beaten

1 tablespoon coconut oil, melted

1/4 teaspoon cinnamon

Saute the banana in the coconut oil until well cooked, then pour over the egg and cook until set. Sprinkle with cinnamon and serve.

During my runs, I tend to listen to the same playlist as my Housework Songs as these are upbeat tempos. When I do at home HIIT workouts, I have set music that times me for my reps and gives me rest periods, and I find this extremely helpful in keeping me motivated, and it also means I can get some movement in without leaving my house. I mix the HIIT workouts with my running to mix things up a bit, and also walk for an hour 5 days a week.

After a workout, I find it helpful to have a fluid replacement and supplement in one- these travel packs are convenient and easy to mix up anywhere I run. A handful of nuts is also great if you don't have any fluid on hand, although it is important that you do rehydrate after exercise.

If you are looking for a clean, high quality pre-workout supplement, I suggest checking out ETBFit. I love the philosophy behind their name, which stands for "Eat The Bear". As they say, “Some days you eat the bear, and some days the bear eats you.” I love that these products contain no banned substances and disclose all of the ingredients on the label, and ETBFit also provide free nutritional and training guidance.

I believe that eating nutritious, healthy food and supplementing when needed will set me up to get the most from my workout, and I feel better in myself when I am putting the right fuel into my body. I hope you will try some of my recipes pre-workout and let me know what you think!

Linking up with Fitness Friday.