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Finding Out My Daughter Has Coeliac Disease

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.

Finding Out My Daughter Has Coeliac Disease:

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.

Finding Out My Daughter Has Coeliac Disease

Finding Out My Daughter Has Coeliac Disease.

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 an 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 forever. 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 the 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 ๐Ÿ™‚

Finding Out My Daughter Has Coeliac Disease.


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.

I have plenty of Gluten-free recipes on my blog now too.

You can find them all here: Gluten-Free Recipes.

Finding Out My Daughter Has Coeliac Disease.

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58 responses to “Finding Out My Daughter Has Coeliac Disease”

  1. Tamar SB says:

    I have celiac Claire – feel free to email me for any advice – I was diagnosed at the same age as your daughter. I know it's hard but I am happy to help as much as I can!

  2. vanity andme says:

    Claire. I had no idea all this was going on. I'm sending you a huge hug. I know how worried you must be. I also know how hard it is to ave to suffer a restricted diet. Having all my allergies is a real pain in the bum. I'm afraid I don't know much about celiac disease, but if I learn of anything I will surely let you know xxwww.vanityandmestyle.com

  3. Morgan Prince says:

    Oh Hun that must've been a shock. My sister has Coeliac Disease and now that she's on a gluten free diet she's much happier. I know that the gluten free stuff is a lot more expensive and that sucks. Hope you manage to find some recipes she will love. X

    • Thank you Morgan. It was a shock and even more so trying to find food she can eat and also want to eat. Lunch boxes for school are the hardest thing at the minute as she doesn't like the bread and the pasta is not as nice cold ๐Ÿ™

  4. Helen J says:

    Gosh what a journey you and your daughter have been on, sending over positive thoughts. I've seen gluten free food in Aldi, so I'd imagine that's a cheaper place to buy it ๐Ÿ™‚

  5. Talya says:

    I know quite a lot of people who suffer from Coeliac Disease and while it does present a big lifestyle change thankfully it's much easier to support these days with all the food options available…what a relief finding out that this was what it was. x

  6. pinkoddy says:

    I don't know much about it – is it related to the Vitiligo at all? I am glad you have a lot of support with the gluten free diet – I know most vegan dishes state that they are gluten free too.

    • Thanks Joy. I do not know for sure until we go to the city hospital but the Doctor said she thinks the vitiligo and coeliac are related and the eye tumour was a red herring what she was sent for. Hopefully it will be so the whitening of the skin will not get any worse now. It has only been 6 days and I am sure it is turning colour. Not sure if this is just wishful thinking though.

  7. Cathy says:

    Oh bless her, it is so hard dealing with a new diagnosis. I hope you find lots of ways to treat her x

  8. Heather{Our Life In a Click} says:

    I'm sorry you guys have been going through all of this. I do know there are a lot of GF options out there and it's much more accessible these days. When my daughter went vegan I went through a lot of the same emotions you are going through but I've learned to embrace it and eat that way myself now. (I know it's different because it's a choice not a health condition).

  9. mummabstylish says:

    Ohh that's been a bit of a shock I expect, I do feel for you and am sending best wishes with this message. My friend suffers from this and I think that Pizza Express do a free from pizza base in some restaurants. Good luck and I'm sure there's plenty of people out there will to share their information with you. x Jacquiwww.mummabstylish.com

  10. Sophie's Nursery says:

    Oh so sorry to hear that ๐Ÿ™ She sounds so strong tho, wishing you all the best x

  11. Five Little Doves says:

    I'm so sorry to hear this. I have been investigated for this for two years now, I've been gluten free for two years as a result. Its so hard to get used to but after a while it does get easier eating out and substituting gluten goods for free from. Lots of love. xx

  12. Judee Algazi says:

    Claire, That is really tough diagnosis for a kid. I have celiac and my blog is of course completely all gluten free recipes. There are so many restaurants that have gluten free menus now if you ask. I'm not sure if you have an Aldi's where you live, but they have gluten free products at a reasonable price. Good luck with everything and if I can help in any way , let me know.

  13. Kara Guppy says:

    I really feel for you all, my friends daughter is coeliac and milk intolerant and they find it really tough to manage but there is lots of support out there. Good luck xx

  14. Baby Isabella says:

    Oh no sorry you had to go through this, but its more widely recognised and as such there are more food substitutes on the market but do agree that gluten free foods are proper expensive! I hope it doesn't effect her too much x

  15. Mother of 3 says:

    OH I am so sorry to hear this! They have been questioning whether my youngest has a gluten allergy/ insensitivity with all his tummy troubles and while I know there are lots of gluten free alternatives around I am quite nervous about what he WOULD eat if it turns out to be the case. He is such a picky eater and I feel like all he eats is bread, pasta, and crackers. Good luck to you and your family as you learn to deal with this new diagnosis. At least she sounds like she had the absolute right attitude about it!

  16. Kezzie says:

    Wow, what a year for her in terms of health issues! I am not surprised you have been so stressed! Bless you and bless her for her cheerful no-nonsense attitude to it! My friend is gluten intolerant and she said that the basic Tescos value ready salted crisps are fine for her. I'm not so sure about lots of recipes but if I see anything, I will let you know.x

  17. Stephanie Moore says:

    Ah bless you all, what a lot to all take in. Pinterest is fantastic for great family meals with dietary issues to think about. Sorry I can't help anymore than that

  18. Alex says:

    Gosh you really haven't had it easy but you must be so proud of your daughter and her wonderful positivity. I have no advice to give Im afraid x

  19. Angela Milnes says:

    This can't be easy for her.. I hope there is a lot of info out there to help you. Pinterest has good recipes for different diets and it's good to hear how positive your daughter is about it!

  20. Cheryl says:

    Hats off to your daughter for taking this all in her stride. She sounds like a very positive and strong person. I would have reacted the same way as you. I hope you find meals that she can enjoy. #pocolo

  21. Louisa says:

    My brother has to follow a gluten free diet and because coeliac disease is often genetic I am currently having tests to see if I do to. The things that contain gluten is quite surprising. I have no idea where I would find a gluten free lip salve? Thankfully more places are becoming aware of the condition and many restaurant offer a gluten free alternative. Your daughter sounds amazing and her positive attitude puts me to shame #pocolo

  22. Catherine @ Story Snug says:

    It takes a while for a family to adapt to a gluten free diet but there is lots more choice than there was twenty years ago when my mum first went gluten free (although as you say often more expensive ๐Ÿ™ )I have been gluten and dairy free for a couple of years now and although it can be a challenge I've started to adapt recipes by using gluten free flour and oats. I have lots pinned to my Pinterest recipe board and have just added a banana pancake recipe to your linky. I make it with gluten free flour and it's super easy and super tasty, the whole family loves it :)#MMBC

  23. Jayne SMABL says:

    Oh Claire sorry to hear this. It must have been such a shock. Your daughter sounds very positive about it all though, which is a good thing. I hope you get all of the support you need xThanks for sharing with #MMBC. Hope to see you next week ๐Ÿ™‚

  24. Kim Carberry says:

    Oh no! I am so sorry to read this. Sending hugs! You have had so much going on and worry. I don't know much about Coeliac Disease but Tesco do a lot of Gluten free food and it isn't too expensive. Good luck x #MMBC

  25. Debbie Roberts - Debs Random Writings says:

    Hi Claire, I love your daughters attitude! She's going to go far in life. If only it was bottlable. I know nothing about coeliac disease. but it sounds like there are to be many changes in your daughters life and you know I think she's going to face them just fine!Thank you for linking up with the #MMBC.XX

  26. Kate Glutenfreealchemist says:

    Hi Claire. I'm Kate and I blog over at Gluten Free Alchemist. We've been there and are now 6 years into diagnosis. My daughter is a star and an amazing advocate for Coeliac. We have viewed the whole experience really positively as a family and have found living gluten free to be pretty straight forward on the whole. My daughter is now 12 and I am sure would be more than happy to talk to your daughter about how she finds things. Just ping me an e-mail if you want to check anything out, want to call me, or if you think your daughter fancies another young ear to bend (glutenfreealchemist@gmail.com).As for McDonalds? They are really straight forward…. take in your own bun (worth cutting in half before you get there) and get them to prepare her gluten free meal…. done! No missing out at all (in fact I can hear her choosing Dominies Pizza in the other room as I type)Your daughter (and the rest of the family) will be just fine. Promise! x

  27. Stephanie 139a says:

    That must have been quite a shock but best to know – hope you've had lots of lovely advice and are adapting to your new worlds. Thanks or sharing with #PoCoLo x

  28. Le Coin de Mel says:

    Oh my goodness, what a summer for you and your daughter. Once you know where to look, 'free from' food is not that difficult to find, but it is really expensive. It takes a lot of getting used to, but hopefully you'll manage to adapt your recipes / main meals and once you have a 'bank' of safe meals, it gets easier. Thanks for joining in with #FreeFromFridays.

  29. REBECCA SMITH - Glutarama says:

    Oh my dear, what a rollarcoaster you've all been on. I'm always here to help if you need to pick someone's brains xxx

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