Tuesday, 5 September 2017
Finding Out My Daughter Has Coeliac Disease..
It has been a bit of a rough year for my Daughter, with one health scare after another.
I am so proud of her and how she takes each piece of news in her stride. She thinks about it quietly to herself for a while, has a little read about things on the internet and then smiles and gets on with her life.
She is so strong and never lets anything get her down.
A few months ago she went to the opticians for a routine eye test. She had mentioned that she could not see the board at school clearly, unless at the front.
It turned out she did need glasses. Not only that, she had something behind one of her eyes like a birthmark or faint grey line and we had to go to the hospital to check it out.
Weeks passed and eventually, our appointment came through. I was worrying every day. My Daughter was more philosophical saying "let's wait and see, the hospital is the best place, they can do anything."
By the time we went to the hospital, I was a nervous wreck. When we were in the hospital the Dr told me she had a tumour at the back of her eye that needs to be monitored regularly. You can imagine how I felt getting this news and how upset I was. I burst into tears in front of the Dr and my Daughter.
My Daughter just turned to me and said "don't get upset Mum, I will be OK." She smiled and kissed me on the forehead. She wasn't going to let this news spoil her day and carried on being her fun and jokey self. A lesson I need to take from her.
I said if everything was OK I would take her to Mcdonalds for a treat. After hearing news like this, I just wanted to give her a hug and go home. We did go to Mcdonalds settling for the drive thru. At least I could hide my tears behind my sunglasses in the car.
When we were at the hospital having her eye tumour checked, they asked us lots of health questions like are there any white patches on her skin? Anything unusual happening to her? I remembered the pale white patch on her right leg, that we thought was from a fall that did not heal properly. They then told me they would refer me to another specialist to have this checked out.
Fast forward a few Months, lots of visits to the Doctors and Hospital. Lots of blood taken.We were told by a few Dr's that they thought the patch was Vitiligo, a condition in which areas of skin lose their normal pigment and so become white. Makes sense as my Daughter has got more suntanned through the Summer, her white patch became whiter.
Then a phone call from the GP surgery can we pop down to see the Doc. Nothing to worry about, they always seem to say! One of the blood tests came back with a equivocal result for Coeliac Disease. What the hell is that?? Was my first thought. Apparently it is a result that is neither positive or negative. So more blood tests needed.
Last week when we were driving home from our holiday. Yep 5 days away eating all you can eat. We got a call from the hospital. Two more test for Coeliac had come back positive and we would be getting referred to the City hospital for some advice/treatment.
It was all a bit much too take in. So we stopped at a service station for a break.
My sweet little 12-year-old Daughter life is going to change for ever.. We knew nothing about Coeliac until they mentioned she may have it. Both me and the Hubby and read about it online, we were hoping we could forget about it. No more eating whatever she wants. No more of her favourite cereals, pancakes or pastries. No more picking whichever cakes he wants from the supermarket.
Once we got home from a 5 hour + drive it was straight to the supermarket looking for gluten free food. How hard is it trying to get gluten free foods??? Also, how much more expensive are gluten free foods?? Wow very expensive.
Over the last few days, it has been challenging. No more gravy or stuffing or Yorkshires on her Sunday dinner was just the start. Every meal has had to be separate. Again she has been great. At least one of her favourites Pom Bears are Gluten free. You can't unfortunately have crisps at every meal though. I tried that one when I was young!!
We have so much to read about Coeliac, lots to learn and perhaps when we get the right flour, lots of baking..
Do you suffer from Coeliac disease? or know someone who does?
Are you on a gluten free diet?
Can you help me, help my Daughter by giving us any tips, recommending any good places to buy gluten free foods, know of a great recipe book we could buy or find gluten free recipes on the web?
Please leave me any helpful links below, I would be very grateful :)
I am lucky to have had a lot of Gluten Free guest posts on the blog over the last few years. Once I have lots of cooking ingredients in place I will be making some of the recipes up. I have started a linky for all Gluten Free recipes if you have posted any Gluten Free recipes on your blog could you share them here with us? All are welcome to link up all your Gluten Free recipes here.