Coeliac / Gluten Free

Fin’s Coeliac Diagnosis

It was a normal day in May 2014 and for some reason, I had grabbed the mail as I had left for work that morning, stuffed it into my bag and forgotten about it until lunchtime.

Lunchtime came and the first letter was “To the parent / guardian of Finley Rhys Gough”. I assumed that it was his next routine diabetes appointment as we had been to the last clinic a week previously for him to have his annual bloods.

I opened the letter and read “Some of Finley’s bloods have tested positive for Coeliac Disease….”. I didn’t get any further than that. I felt sick and without saying a word, picked up my phone and went to outside to ring Andrew.

I don’t remember what I said, I just remember feeling absolutely devastated that he would have to learn to live with ANOTHER life long condition. Andrew, as usual, calmed me down and told me to read the letter properly and to ring the hospital to see what they had to say.

Upon reading the letter fully, I read that they wanted to repeat the tTG blood test in case of a spurious result in the lab. I contacted his team and they told me that his levels had come back over 200 (20 times the normal range) but that I was to do nothing at this point until the second tests came back and they booked him in for the following week.

I was in a daze all afternoon and when I arrived at the school gates and saw his gorgeous little face beaming as he ran towards me, I really struggled to keep it together.

He absolutely hated having the blood tests at the hospital and so when I told him that he needed to go back, he immediately started crying and asking me why? So, I told him that there was a nasty monster called “Gary Gluten” (first name that came into my head) who lived in some foods and if he got into people’s stomachs he could cause them to be ill. The test would tell us whether “Gary” had got into his stomach and if he had, we would have to buy special foods that he couldn’t get into. He seemed to accept this and didn’t mention it for the rest of the day.

In the meantime, I was googling all sorts. The likelihood of a spurious lab test, what a tTG over 200 meant and all the signs and symptoms of Coeliac Disease. The good thing was, he didn’t have any of the most obvious signs outlined on the Coeliac UK website.
Symptoms include diarrhoea and other gut symptoms, faltering growth or a change in growth pattern, irritability and a bloated tummy.

This picture was taken just after the blood tests, where he looks a total picture of health. The only thing I could put my finger on that was different over the preceding months was that his stools had been a pale yellow colour and that he had complained of “achey legs” once or twice which was out of character.

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The following week came and the bloods tests were, as usual, an absolute nightmare. I had to sit him on my lap and cuddle him while they had this singing donkey blasting to distract him which Andrew was waving around in his face. Looking back, it must have looked ridiculous but it was the only way to get him to comply.

A week later, the results, again, came back with a tTG over 200. They had also sent a sample to the University of Wales hospital for an IgA EMA test which had come back as “strongly positive” for Coeliac Disease and I was told that his consultant would be in touch.

Although I was gutted that this meant that he did have the condition, I was far more positive due to having a few weeks to come to terms with the possibility. I had ordered personalised stickers from Ebay, some with a thumbs up and some with a monster’s face on. When I got home from work, I told Fin that we had found out that Gary Gluten had found his way into his stomach and that we would need to check all the foods in the cupboard and stick the monster faces on everything that he was hiding in and put thumbs up on all the foods where he wasn’t.

This formed part of a game for him which he enjoyed and we spent a good few hours going through all the cupboards. I then took him to Asda to pick some treats from the Free From aisle and I remember there was nothing like the variation you see today. The only things remotely “treat like” was some dairy free fudge (being rather naive at this point, I didn’t realise normal fudge was gluten free) and some crumpets. We bought these and headed home, with a view to being gluten free from that day on.

The next day, I was contacted by his consultant who told me that whilst his results were enough to be fairly certain of a Coeliac diagnosis, they wanted to be extra sure and were referring him to a Dr Ieuan Davies at the UWH Cardiff to have a duodenal biopsy taken. This procedure would require a general anaesthetic. I lost it at this point and demanded to know why the 3 positive results weren’t enough. I was told that this was the standard practice for our health board and to ring the consultant’s secretary in a few days to find out how long the waiting list was. In the meantime, I was to carry on feeding him gluten as normal.

I felt sick. They expected me to deliberately feed my child something that I knew was harming him. Something that was harming his intestines so badly that the level of anti-bodies in his system were more than twenty times what they should be.

I had two choices.

  1. Do what they said and wait for the appointment or
  2. Remove gluten from his diet and risk never having a formal diagnosis.

As much as I wanted to go with option 2, I knew that Coeliac disease could cause other long term issues and that children were supposed to be monitored annually after diagnosis, to ensure the levels of antibodies had dropped. If Fin didn’t receive a formal diagnosis by a clinician, he would never receive the follow up care he needed and so that was no longer an option.

So, I decided to go with Option 3. Feed him 2 pieces of normal bread per day, make the rest of his diet gluten free and do everything in my power to get him diagnosed without a biopsy.

I spent hours googling the various methods of diagnosis across different health boards and came across the BSPGHAN guidelines and in particular, the following guidance.

If tTG raised—and greater than 10×upper limit of normal for assay:
Take further blood sample to check IgA-EMA and determine HLA-DQ2/HLA-DQ8 typing. If EMA+ and patient either DQ2 or DQ8, the diagnosis is confirmed without the need for a duodenal biopsy. If EMA antibody testing is not locally available, a second strongly positive tTG antibody may be substituted and serum saved for later EMA testing.

Knowing that Fin had two tTG tests which were 20 times the upper limit and a positive IgA EMA test, this was all I needed to know and I decided then and there that there was NO WAY I was allowing the biopsy.

All I had to do now, was to get a health professional to agree with me.

I left it three days and rang Ieaun Davies’ secretary. Her phone rang and rang and so I managed to obtain another number for a pool of secretaries who informed me she was on sick leave. She promised to try and find out whether they had received the letter and get back to me. She didn’t.

So I rang her over and over again, until there came a time where I feared she may take out an injunction against me! Eventually, I managed to speak to the secretary who had returned from sick and she promised to review the letter, speak to the consultant and get back to me. It took another few phone calls but eventually she called me back and said they had reviewed the results and whilst they were strongly indicative of Coeliac Disease, it was still hospital policy to perform the biopsy and so they had put him on the waiting list which was approximately six months.

Six months!! Six months of deliberately poisoning my child with something I knew was harming him. There was just no way I was prepared to do it.

I joined a support group and found lots of families who had received a diagnosis without a biopsy which just fuelled my belief that it was totally unnecessary.

I then looked into seeking the advice of a private consultant and contacted the Spire Hospital in Cardiff who made me an appointment with Dr Huw Jenkins, Child Health Consultant for a week later.

The day came, the 17th of June 2014, and I turned up to the appointment with Fin armed with all his test results and the research that I had done, ready for a fight.

He asked me all about his medical history and explained that Coeliac and Type 1 Diabetes went hand in hand. He also told me that he had assisted in drawing up the BSPGHAN guidelines and was very familiar with the recommendations.

He then took one look at both sets of tTG results and the positive EMA and said “There is absolutely no doubt in my mind that this child has Coeliac Disease. He has had all the tests that he needs to confirm it and there is absolutely no need for a biopsy. I will write to his consultant today to confirm my diagnosis and he can go gluten free immediately.”

And I wanted to jump across the desk and hug him!

It was a strange feeling to have my fears confirmed and feel grateful, but this boy of mine had been through enough. He was already getting poked and prodded with needles 8 times a day due to his Type 1 Diabetes and so there was no way that I was putting him through a totally unnecessary procedure, especially one that came with risks of it’s own.

I must have thanked Dr Jenkins at least 20 times and as we walked out of the room and I explained to Fin that the doctor had confirmed that he wouldn’t be able to have any foods with “good ole Gary” in, he looked at me and said “OK Mammy, let’s go shopping!”

And shop we did. There was a Waitrose directly across the road where I let him loose with a basket and his own scanner and he chose anything and everything that he wanted.

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And we haven’t really looked back since. Coeliac has become part of our lives as much as Diabetes has. It’s just part of who Fin is and he totally accepts that. He never complains and is convinced that he is a better rugby player because of his gluten free lifestyle!

He has had his bloods done every year since and each of the 4 annual tTG results have been between 3.3 and 3.8 which are classed as negative so we know there is no gluten at all making it’s way into his diet, through cross contamination or otherwise.

Here he is, each year since his diagnosis. Looking healthy and always smiling!

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If your child is being investigated for Coeliac and has two tTG results of over 100 (ten times above normal), please know your rights and request the genetic type test for HLA-DQ2/HLA-DQ8 along with an IgA EMA screening. If all of those are positive, then a duodenal biopsy should not be necessary.

Beth

xx

Type 1 Diabetes

Blogging – 6 months on!

Six months ago, when I wrote my first ever blog post, I was so nervous.

I didn’t think for one minute, anyone would be interested in anything I had to say and so I decided to approach it with the view that it was to record memories for the boys to look back on when they are older; to remember all the fun times we had and the places we went. And if a few people were interested in our little lives along the way then so be it!

Today, I woke up to 1,000 followers on Instagram and I can’t quite believe it!

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In just 6 months, blogging has brought me so many opportunities and allowed me to “virtually meet” so many people.

I have befriended the most gorgeous little girl Katie and her mum Sonja from Melbourne, Australia and I look forward to seeing her beautiful pictures and reading her posts. She inspires me with her positivity and writes so eloquently for a 9 year old girl.

I have received support from other mums in the middle of the night when I have been battling to keep Fin’s levels up, making me realise that I am not alone in all this and there are plenty of others out there fighting the same battle; day in, day out.

I have picked up tips on the latest gluten free foods released in stores and found delicious gluten free recipes to try.

By others sharing how they administer different percentage splits of insulin doses, I have managed, through trial and error, to prevent huge blood sugar spikes after “problem” foods. (Shout out to dougiesdishes – you are doing an amazing job!)

I have spoken to people who are newly diagnosed and given them advice on carbohydrate counting and had mums of newly diagnosed children message me privately for support after the shock of a diagnosis.

I have been asked to be the parent representative in the All Wales Diabetes group by the Local Health board and have been speaking to Dexcom’s representatives for Wales to discuss the promotion of the G6 and to work with them to improve the postcode lottery of NHS funding for the CGM sensors.

Fin has been asked if he would like to be “the first Welsh mini ambassador” for Dexcom and we are looking forward to collaborating with them on some local events in the new year.

And on days, where I feel like a rubbish mum who is doing a rubbish job, people I have never met are there, with encouraging comments and a reminder that tomorrow is a new day!

It’s been a mad, crazy journey so far but I have loved every minute and I would never have dreamt of being in touch with so many different people all over the world in such a short space of time.

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Out of all of these people there are 2 messages that I have received which have stuck with me and made me feel grateful that I took the plunge and started this blog.

The first was a message from a mother of a Type 1 child who after watching the video of Fin inserting his own sensor, sent me the following:

“I just wanted to say thank you for posting this. My 11 year old son has always needed numbing cream for G5 changes and has never been able to do a sensor insertion himself. We received our first G6 kit this week, and tonight, after watching this, he did his own sensor with no numbing cream. Your T1 hero inspired my T1 hero to become more independent in his care and I am ever so grateful.”

The second was from a lady who has a daughter with a number of health conditions, including Type 1, who sent me this:

“I have been working with a counsellor who has done lots of work with families of children with chronic illnesses when she was training. She told me that there are 3 types of parents who deal with a diagnosis.

Some who bury their head in the sand and do nothing.

Some that feel it’s the end of the world and find it hard to see past the illness (that’s me)

and

Some who show their children that whilst they may have this illness, it doesn’t need to stop them doing anything and they can still achieve amazing things (I believe that’s you).

At the moment whilst, I am the 2nd parent, I want to be like you, the 3rd, and I am getting better at it.”

Both of these messages made me incredibly emotional because once upon a time, I was the 2nd parent who couldn’t see past the illness and I had a little boy who was so terrified of needles, that I had to do cannula changes by commando crawling into a bunk bed with a head torch in the middle of the night.

And so, to think that we have come so far, that other people are looking to us for inspiration is totally overwhelming and makes me extremely proud of us both.

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I always said that if this blog helped one person on their journey, then it would make all the hours I plough into it worthwhile. In 6 months, it has exceeded my expectations massively and I am so glad that I took the plunge and pressed that very first Publish button.

Long may it continue.

Beth
xx

Holidays

Orlando 2017 – Day 12

Day 12 – Busch Gardens

Everyone had a lie in today and no one woke before 8.30 am.

We left about 9.45 and arrived at Busch Gardens, which is located in Tampa Bay just before 11am.

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It was empty there and we didn’t wait more than 5 minutes for any ride. First of all, we watched a Cheetah training exercise.

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Then, we did Cheetah Hunt, Kumba, Montu and Cobra’s Curse.


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We then went to look at the lions, hippos and crocodiles and then caught the cable cars up to Stanleyville where we did Sheikra and then made our way over to Pantopia for lunch.

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We went to the Dragon Fire Grill where they made us two bake in the bag Gluten Free Cheese pizzas which were delicious.

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Next, we went on Scorpion and Falcon’s Fury. This is a new ride which drops you 300ft at 60 miles per hour after your seat tilts 90 degrees so you are facing the ground! It was amazing but one of the scariest rides I have ever been on! Once we recovered, we rode Sandserpent and then Andrew and Fin went back on Scorpion while me and Cian went on the Phoenix which is an upside down pirate ship. I absolutely hate this ride as it hangs you upside down for ages but Cian really wanted to do it and it was every bit as bad as I remembered!!

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After this we went back to Stanleyville and went on the Stanley Falls Flume. It was a bit lame but we got soaked. Cian was desperate to go back on Sheikra and wait for the front row but for some reason it was closed and then as we were about to give up and go back to the front of the park, it re-opened and we walked straight on and got to sit at the front.

We caught the Skyride back to Edge of Africa and talked my mother into coming on Cheetah Hunt with us. It was one of the funniest experiences I have ever had. She screamed and howled all the way around with her eyes shut and kept asking ‘Have we been upside down yet?’

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We then went back on Cheetah Hunt for one last time before getting ice creams and heading home.

Nobody could be bothered to get ready to go back out so we stopped in Applebees on the way home and then had a couple of Coronas in the villa while the boys played pool.

Beth

Xx

Holidays

Orlando 2017 – Day 11

Day 11 – Volcano Bay

We packed up as soon as we woke at 7.30, put all the luggage in the car and headed to the diner again for breakfast. Me and Fin both had bacon, sausage and breakfast potatoes. He also had scrambled eggs with his.

After this we headed to Volcano Bay as guests have early access from 8.30 am before the park opens to the general public. You have to catch a shuttle bus in from the main Universal car park if you are not on site.

I had read before we left that as it was newly opened, some people were arriving at 6.30am to start queuing and some were still being turned away as the park was at capacity.

From our hotel, it was a 2 minute walk into the park and we were there with sunbeds right in front of the volcano by 9.15am.

The park operates a Tapu Tapu system where you are issued with a wrist band upon entering the park. Then, if there are queues for a ride, you tap your band against the sensor and it puts you in a virtual queue and vibrates when it’s your turn to ride.

We decided to try and do all the rides beforethe official park opening of 10am to give us the best chance of walking straight on. We managed to do them all apart from the main drop slides in the actual volcano by 10.40am and didn’t have to queue for anything.

The Aqua Coaster which attracts the biggest queue was ‘Ride Now’ and we went around twice as there was no one waiting.

After we had done most of the rides we sunbathed for a bit while the boys played in in the waves which occur every 20 minutes and then went on the wild river which was good fun but the currents were really strong.

Lunch was carnage. You had to queue in a 4 deep line only to then be directed to a specific window depending on what you wanted to order and then queue again to actually order then wait for your food and queue again to pay! It was a totally ridiculous situation and took me 40 minutes from starting to queue until paying, by which time I had lost the will to live.

Then, as I was walking to the table with the 2 GF meals and 3 drinks, a boy walked backwards into my tray and knocked 2 of the drinks all over the floor. He was mortified and kept apologising. Told him it was fine even though I wanted to kill him but at that point was just relived that none of the drinks had tipped onto the food and just made do with the drinks we had left between us.

After lunch, I built up the courage to do the drop slides. I hate them but have this weird thing where I don’t want the kids to think Andrew is more fun than me so make myself do everything that he does!

I did the blue one first. You stand in a capsule, then the floor disappears and you shoot down and then corkscrew in twists and turns until the bottom. It was horrific and water shot into my ears making me partially deaf! Finally, I braved the red one which is pretty much a vertical drop into a horizontal tube. It looks worse than the others but in actual fact it was nowhere near as bad.

The worst part of both rides was the 200+ steps you had to climb to the top! I needed oxygen by the time I got there!

We left around 5.30pm even though the park doesn’t close until 7pm as we had a reservation at Bahama Breeze and wanted to pick up some presents on the way back.

We headed to Bahama Breeze by 8.30pm and was a bit disappointed with the place. There was no real atmosphere there and they had very little GF options meaning me and Fin both had sirloin and mash (which was lumpy) and even though I asked for the steaks to be Medium / Well they were quite bloody and chewy. My mojito was also probably one of the worst I have ever had.

Cian had chicken wings with fries, my mother had goat curry and Andrew had Seafood Paella. They all loved their food so think we were just unlucky. Fin ate half of his then laid out a napkin on the table and promptly fell asleep!

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Water parks seem to wipe him out!

We paid the bill, headed home and went straight to bed as we were all exhausted from a busy few days.

Beth

Xx

Holidays

Orlando 2017 – Day 7

Day 7 – A mad day of park hopping!

So, today was scheduled as a rest day but for various reasons, instead we decided to do a park hop to fit in some extras.

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Firstly, we went to Animal Kingdom as the boys wanted to do Everest and Flight of Passage again. We had a lie in and got to the park at 11am.

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We did Everest first, then the Jungle Trek and It’s Tough to be a Bug again before heading to the Rainforest Café for our 1:15pm reservation.

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Our meal was lovely once again and we were served personally by the chef. I had the bacon cheese burger and Fin went for the ribs with fries. We then shared the white chocolate and raspberry cake for dessert.

Our Fast Pass for Flight of Passage wasn’t until mid afternoon and so after lunch we made our way over to Dinosaur again.

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Flight of Passage was every bit as good the second time around and I was a little sad that it would be the last time we got to experience it.

Next, we got in the car and headed to EPCOT as Cian wanted to do the Test Track ride which was closed due to a technical error when we were there on the Sunday. He is obsessed with cars and so if he had missed out on this opportunity he would have been gutted.

As we had used all 3 of our Fast Passes, I was then able to book an additional Fast Pass for Test Track in EPCOT.

Tip: You can only book Fast Passes in different parks once you have used all your first three in one particular park. Also, once you have paid the parking at one Disney Park, your ticket covers you for any of the parks on that day.

The boys loved designing their own cars but I was totally unprepared for the speed of ride which took my breath away.


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Lastly, we headed to Hollywood Studios for the Star Wars Galactic Spectacular. We were scheduled to go to Hollywood Studios on the 9th November but the Star Wars event finished on the 8th so we didn’t want to miss it.

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En route, I booked a FP for Rock n Rollercoaster so that we could ride as soon as we got there. I had forgotten how rough this ride was. I love rollercoasters but this really bashes your head around and I had quite a headache by the time we got off. Once was definitely enough.

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There was loads going on in the Studios. There was some screening to do with the Christmas Parade which there were huge queues for and there was also a Christmas event being filmed. In addition, Fantasmic was taking place at 7:30pm which meant we had front row seats for the Star Wars show.

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I’m not a Star Wars fan by any stretch of the imagination but it was really impressive with illuminations of scenes from the films along with music and finishing with fireworks. We were really glad we had made the effort to see it.

We didn’t eat at the Studios as we were still quite full from our meal at lunch and so we grabbed some pizzas on the way back to the villa.

Our much anticipated dolphin swim was scheduled for the next day at Discovery Cove and we could not wait!

Beth

xx

 

Holidays

Orlando 2017 – Day 5

Day 5 – Aquatica

None of us woke up until 8:45am and so didn’t get to Aquatica until 10:15am but it was empty and so we parked right by the entrance.

We had such a lovely relaxing day. We bought the dining package which was $25 for adults and $15 for kids for an entrée, dessert, snack and all day refillable drinks in a souvenir cup which we definitely maximised the use of, as the weather was scorching.

The boys spent the majority of the day either riding the slides or just having fun in the pool.

The gluten free options for lunch were probably the worst we have come across. They were able to do hot dogs but no fries and I had a burger in between two pieces of hard gluten free bread.

We managed to do all the slides and I even braved the one in a cylinder where the floor disappears form under you. I was terrified but it was actually not as bad as I expected. I made the boys go on first to suss it out obviously!

We left the park at 5pm and then the boys spent a couple of hours in the pool back in the villa before we went for food at Outback.

I love Outback and it’s probably one of my favourite restaurants in Orlando and as an added bonus, they have a extensive gluten free menu!

I had a rib eye steak with a loaded jacket potato and Fin had bbq ribs and a jacket potato. Randomly, as I didn’t want my second side, they brought me two loaded jackets.

The food was delicious, as always and everyone agreed it was our best meal yet.

A very long day awaited us in Magic Kingdom the next day and so we headed back as soon as we had paid our bill.

Beth

xx

Holidays

Orlando 2017 – Day 3

Day 3 – Sea World

As Sea World didn’t open until 10am, we had a later start and arrived as the park opened.

It was relatively quiet so we decided to try and do all the big rollercoasters first on the basis that the queues would be smaller than later in the day. There are currently 3 rollercoasters in Sea World, Kraken, Manta and Mako. Fin was a few inches too short for  all 3 of them so he also wanted us to “get them over with” as he was gutted that he couldn’t ride.

We loved all three of them. Mako was a new addition since we were there in 2012 and the VR headset had been added to the Kraken ride which was out of this world!

We watched the sea lion show and then headed for lunch where we visited the Spice Mill restaurant. As there was nothing specifically gluten free on the menu, I asked one of the servers if they could cater for us and they immediately called the chef.

He offered to make us bacon cheeseburgers on gluten free buns with fries and despite there being huge queues, he told us to sit at a table and he would bring them over. It was absolutely delicious and one of the best Quick Service meals of the whole holiday.

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After lunch we managed to fit in the dolphin show and the main Shamu show along with at least 3 rides on Journey to Atlantis where we got soaked and one last ride on Manta which is my favourite.

The park closed at 6pm and we had more than covered everything that we wanted to. My main reason for visiting Sea World is for the rollercoasters rather than the shows and in reality, I don’t feel there is enough there to fill a whole day.

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At some point this year, their new ride Infinity Falls is due to open which is a high speed family rapids ride. This was being built when we were there and looks like it will be great fun.

Once we left the park, we headed to the Disney Wilderness Lodge resort where we had a reservation at the Whispering Canyon Café. The restaurant is based on the ground floor of the Wilderness Lodge hotel and the entrance hall / reception is stunning.

I had read about the restaurant before we travelled, hence the reservation, but nothing can prepare you for how totally random it is.

If someone asks for ketchup, the server screams “Ketchup” and every single table in the restaurant ends up bringing their bottles of ketchup to your table!!

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In the middle of the meal, the servers will just randomly shout instructions such as everyone stand and sing / dance to a song of the waiter’s choice or all children ride around the restaurant on a hobby horse. It was one of the noisiest, least relaxing meals I have ever had but Fin, especially, thought it was hysterical.

The plus point was that the food was delicious. We had the “All you care to enjoy skillet” which consisted of Family-style Mixed Greens Dressed with Apple Vinaigrette, Fresh-baked Cornbread, Slow-smoked Pork Ribs, Barbecued Pulled Pork, Oak-smoked Beef Brisket, Herb-roasted Chicken, Western-style Sausage, Mashed Yukon Potatoes, Buttered Corn, Seasonal Farm-fresh Vegetables, and Cowboy-style Baked Beans. As an added bonus, it was all gluten free.

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We also had a gorgeous gluten free chocolate cake with marshmallows, chocolate chips and ice cream for dessert.

While the food was lovely and the kids really enjoyed the atmosphere, I don’t think the meal justified the $230 price tag for 5 people. This was by far the most expensive meal of the whole fortnight but I suppose you pay for the location and the entertainment. Again, all this would be covered if you are on a Disney or Deluxe Dining plan which is amazing value.

Animal Kingdom tomorrow – my favourite Disney park!

Beth

xx

 

 

 

 

 

 

 

 

Holidays

Orlando 2017 – Day 2

Day 2 – EPCOT

We agreed to leave at 8:45am and so I had set my mother’s alarm for 8am the night before. I was awake off and on from 5am and eventually got up at 7:45am and started breakfast.

My mother was in the master bedroom on the ground floor and by 8:25am, I realised I hadn’t heard her moving around. I sent Cian to knock on her door and she ran out looking like the guy from the Prodigy’s Firestarter video. Apparently, her phone had turned itself back an hour and so she thought it was only 7:25am.

Despite this, we were out of the villa and on the road by 8:40 (without me having to use my whistle) and we arrived at EPCOT by 9:15am.

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The bag search took slightly longer as I need to show them the medical note for all of Fin’s medication and gluten free snacks but we were in the park and heading for our breakfast reservation by 9:30am.

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We had booked a character breakfast at the Garden Grill which is a revolving restaurant in the Future World West area of the park. I had come across the restaurant after reading several gluten free blogs and everyone raved about the GF Mickey waffles and they were not wrong.

The food was amazing!

We had cinnamon muffins, the all important Mickey Waffles, bacon, sausage, scrambled eggs and hash brown barrels as well as a massive bowl of fresh fruit and juices. You could order as much as you wanted but we found that the first serving was more than enough for us all.

During the meal, Chip n Dale, Mickey and Pluto stopped alongside our table to sign autographs and pose for numerous photos much to Andrew’s delight. I have literally never seen a grown man get so excited to have pictures with Disney characters in my life!

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All in all, it was fab start to our day and whilst it wasn’t cheap at $156 for 5 of us, it was worth every cent. For those people on a Disney Dining Plan or a Deluxe Dining Plan, this would be fully inclusive. You can read more about all the different types of Dining plans here.

We then queued to have our pictures taken with Mickey, Minnie and Goofy as you can’t go to Disney and not get a photo with the REAL Mickey!

After this we used our fast pass for Soarin’ where we spent the whole ride laughing at my mother who kept squealing and wiping imaginary mud from her face.

Originally, I had a further two fast passes booked for 2:45pm and 5:30pm but during the day, upon checking the app on my phone (all the parks have fantastic free WIFI), I found fast passes for Living with the Land and The Seas with Nemo at earlier times and booked these instead. This meant I used my 3 fast passes by 2pm and I could then make further selections for the rest of the day.

Tip: Whilst you can only make 3 fast pass reservations in advance, once you have used these on the day, you are free to make more, one at a time, for the rest of the day. There is a whole web page dedicated to getting the most out of your fast passes here. And whilst it is quite a complicated read, bear in mind that most non fast pass queues are in excess of 45 minutes, which means planning your day in advance will save you a LOT of time.

Living with the Land is THE most boring ride in the world and Nemo was a little young for the boys but we did them anyway and by 3pm, we had used all our fast passes and ended up getting 2 more for Pixar Movies and Spaceship Earth which meant we had utilised five in 6 hours.

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In between, we also managed to fit in Frozen Ever After, Mission Space and the Donald Duck ride in Mexico before leaving the park at 6pm so all in all, a pretty successful day.

 

We then headed to Applebees near the villa for a cheap and cheerful evening meal. They have quite a good choice of gluten free items as you can see below.

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After our meal, we went back to the villa where the boys played in the pool for an hour before we all headed to bed in preparation for the following day at Sea World.

Beth xx

 

 

 

 

Coeliac / Gluten Free, Type 1 Diabetes

Back to school!

So tomorrow, Fin heads back to school and starts his journey in Year 5.
I’ve reverted all his basal rates and carbohydrate / correction ratios back to what they were before the summer holidays and made a record of these in his book.

No doubt, his insulin needs will have changed since the end of July but this will form our starting point and we can then tweak every couple of days based on his readings to get him in range for as much of the day as possible going forward.

His packed lunch is made and his carbohydrates entered into his book:

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His care plan and hypoglycaemia flowchart have been updated:

Individual Health Care Plan September 2018

Treatment of Hypoglycemia

His daily record sheets have been amended and set up ready for the school to print off and his Testing Timetable has been amended in line with the new school timetable.

Testing Timetable Sep 2018

Diabetes Record for school

His diabetes bag is packed with Lucozade (with 100ml portions marked out), a bag of Jelly Babies and a gluten free rice cake for break-time.

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In addition, his gluten free cereal, wet wipes and tissues (for testing) are packed safely in his rucksack.

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And I think that’s it, we’re good to go!

All we need now is some nice steady blood sugars!

Wish us luck!

Beth

xx

*All documents are my own work, please feel free to contact me for an amendable copy which I can provide via email*

Holidays, Type 1 Diabetes

Our Holiday of a Lifetime – Orlando 2017

In October 2017, after counting down the days for over a year, we set off on our holiday of lifetime to Orlando.

My motto on Disney holidays is “Go hard or go home!” and our type of holiday may not be for everyone but when it costs in excess of £10k, I want to squeeze out every last drop as who knows when we will be lucky enough to go again.

With that in mind, I spent the preceding 6 months planning! I followed numerous blogs and visited various websites to suss out the gluten free offerings. I looked at the estimated crowds and park opening times to ensure we went to the right parks on the right days and over time, I drew up an itinerary of what park we were going to on what day, what fast passes we were aiming to get, where we would eat lunch and details of all the reservations I had made for our evening meals. I even noted what outfits we would wear each day and yes, I do realise I have issues!

I also joined the “It’s Orlando Time” Facebook group where I found lots of brilliant tips and also loved reading the blogs that people wrote on the group whilst they were out in Orlando.

That’s when I decided to do the same while we were there as despite taking a million photographs, I felt it would be lovely to be able to look back and remember what we did each day.

As it is almost a year to the day since we travelled, I have decided to record the daily blogs that I wrote on here along with the photos from each day so that we can have a complete memory of what we all agreed was our best holiday ever!

As we were travelling with Type 1 and Coeliac, I am also hopeful that some Type 1 Tips and Gluten Free restaurants we found will be helpful to others.

Travel Day and Rest Day – 26/11/2017 & 27/11/2017

After staying in the Premier Inn North Terminal overnight, by 7am, the kids were bouncing off the walls so we all had showers and went down to breakfast where all the staff were dressed up for Halloween.

Every member of staff we encountered at the hotel both during the evening meal the previous evening, check in, breakfast and check out were all extremely friendly and polite and for anyone travelling to Orlando from Gatwick North Terminal, I would highly recommend staying here.

As part of the price, we had onsite parking at the hotel and as an added bonus, the terminal was a mere 5 minute walk away.

After breakfast, we headed straight to the airport to check in which was pretty painless and then headed to security. Due to all the medical paraphernalia I need to take for Fin, I paid £5.00 per adult (no charge for children) to go through the Premium Security as I always find this the most stressful part of travelling. They were amazing with Fin, immediately agreeing that he could bypass all the machines and agreeing to a pat down instead. As an added bonus we walked straight through with no queues and the whole process was over within 5 minutes. Well worth the £5.00!

We all had a drink in the airport (it’s tradition!) and then met a lady who, in her mid thirties, was travelling to Disney for the first time all on her own. She was so excited and asked me to take a picture of her and she then returned the favour and took one of us all in our Disney T shirts (which Andrew initially refused to wear but I knew I would wear him down!)

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The flight (Virgin Atlantic – Pretty Woman) was on time and the whole journey went extremely quickly. I watched all 7 episodes of “Big Little Lies” and the boys watched Cars 3, Spiderman and Kong: Skull Island.

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We had pre ordered gluten free meals for me and Fin and we were really impressed with them.

For mains, we had chicken in a soy sauce with sweet potato, green beans and peas which was really tasty. We also had a salad bowl, apple crisps and a raspberry jelly.

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Mid flight, they handed out “Fab” lollies and then towards the end of the flight, we had chicken salad sandwiches on gluten free bread with crisps and popcorn.

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Once we landed, we had to queue in immigration for over an hour which meant that by the time we got to baggage reclaim, all our cases were there waiting for us.

Headed straight to Alamo to pick up our car which again, was painless as I had already checked in online. We had paid for a Dodge Caravan and were told to head out to the parking lot and choose whichever one we wanted. We chose a white one, picked up our sat nav from the exit and were on the road by 7pm after landing at 5:20pm.

Tip: I changed my car rental booking several times before we left. Prices fluctuate hugely from month to month and whilst I initially reserved a car directly with Alamo for approximately £800.00, I eventually got the exact same car through Netflights (as a broker for Alamo) for £200.00 cheaper.

We arrived at our villa around 8pm and it was absolutely beautiful. We booked our villa through Citrus Grove Villas and you can see the full specification and details here.

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We paid £1,800 (including pool heat) for 15 nights for 5 of us. However, the villa slept 8 and so for a large party, it would work out at £15.00 pppn which is insane!

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It was located on the Regal Palms complex in the Davenport area. This is approximately a 30 minute drive from the parks but we love the Davenport area and don’t mind a slight drive in the mornings as it gives everyone time to get (even more) excited.

Prior to our arrival, I had arranged for the Villa Management Company to do a shop for us and so we arrived to a fully stocked fridge with all the items we had asked for.

While the boys had a game of pool, me and my mother unpacked and Andrew went to the local pizzeria to pick up pizzas for everyone. The local MIA pizza also catered for gluten free and we had the nicest GF pepperoni pizza ever!

After stuffing our faces, we were all exhausted and headed to bed!

As we were expecting to be a bit jet lagged on the first day, we had the one and only rest day of the next 15 planned for the following day and so everyone could have a lie in.

Day 1 – Pool Day and Disney Springs – 28/11/2017

The kids woke me up approximately 575 times through the night culminating in Cian coming into our bedroom at 4am and demanding to get up as it was “9am back home!”

After me hissing that unless he went back to sleep, we would be on the next flight back home, they finally gave in and I didn’t hear them until 8am when we all got up and had breakfast.

The boys and my mother then played games in the pool while me and Andrew went to Publix to stock up with some more supplies. It’s no wonder most people eat out on holidays out there are the groceries are SO expensive. We spent almost $100 and had very little to show for it.

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We picked up a couple more pizzas and ate them around the pool then spent the afternoon sunbathing and listening to music while the boys amused themselves.

We had made a reservation at T-REX for 5pm but as everyone was enjoying spending time at the villa, we rang to cancel. There were no other reservations left for that evening (it was a Saturday night) but we were told that we would just have to queue for one of the walk in tables. I had ordered a Landry card before we went and so knew we wouldn’t have too long a wait.

Tip: Before travelling, apply for a Landry card here. It costs $25 but that credit then sits on the card and if you have a birthday during the period of your holiday, you also get an additional $25 credit added to the card. Nb. They do not check the birthday in any way and so if you should tell a little white lie, then I’m sure you wouldn’t get found out!

We arrived at T-REX in Disney Springs at 7pm and I heard the maître d tell the man in front of me that there was a 105 minute wait. I flashed my Landrys card and we were seated by 7:20pm so they are definitely worth having. They get you priority seating to T-REX, Rainforest Café, Bubba Gumps and Yak and Yeti amongst others.

The food in T-REX was lovely but the portions were HUGE. They had a few gluten free choices but unfortunately the waffle fries weren’t gluten free and so Fin had bbq ribs and skin on mash which he spent the entire evening picking the skin out of much to my annoyance.

He then had an amazing chocolate flourless cake which he demolished.

Back home, both of the boys eat adult meals. In Orlando, there is NO NEED to buy adult meals. The children’s meals are more than ample and so save yourself some dollar!

For 5 main meals, 3 desserts and 5 drinks, the meal came to $136 but with the $25 credit and $25 birthday bonus on the Landry card, we only ended up paying $86 (plus gratuity)which for a meal for 5 people, smack bang in the middle of Disney Springs wasn’t bad at all.

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After we had finished our meal, we went to the Disney store to buy our Magic Bands and then headed to Guest Relations to get them linked to “My Disney Experience” which meant we were good to go for the following morning.

Tip: Magic Bands are not essential but I would highly recommend them. They act as your ticket to all the Disney parks meaning you just scan your wrist to enter. They are also linked to all your fast passes meaning you simply swipe at the fast pass queue at each attraction to release the barrier. In addition, they link to your photo pass meaning just one of the family needs to scan their band to ensure any photographs are linked to the family Disney account. All this can be done with tickets but it is so much easier not to have to fuss getting them in and out of your purse and with a gazillion things to fit in each day, every spare minute counts.

They also look quite cool.

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Once we had got our bands sorted, we headed home.

EPCOT would be our first Disney park the next day. I planned this first as I am with Homer Simpson in that it is “The most boring place on Earth” and so I wanted to get it over and done with.

As it happens, we had a pretty fab day!

More tomorrow….

Beth xx