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 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 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 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 🙂

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.



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Claire

Hi, I am Claire and I created Claire Justine in 2011. I hope you enjoy reading my posts as much as I love writing them. Please leave a comment below and share your thoughts with us.

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57 Comments

  1. Tamar SB
    5th September 2017 / 1:00 am

    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!

    • Clairejustine oxox
      6th September 2017 / 10:39 am

      I didn't know that Tamar. I will keep this in mind. Thanks so much x

  2. vanity andme
    5th September 2017 / 6:18 am

    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

    • Clairejustine oxox
      6th September 2017 / 10:41 am

      Thanks so much Laurie. I am finding it a little easier each day but it is like a cafe here now making different foods 🙂

  3. Morgan Prince
    5th September 2017 / 7:27 am

    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

    • Clairejustine oxox
      7th September 2017 / 7:41 pm

      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 🙁

  4. Helen J
    5th September 2017 / 7:36 am

    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 🙂

    • Clairejustine oxox
      7th September 2017 / 7:42 pm

      Thank you Helen. I popped in quickly the other day but I need to go back again and have another look now I have more time 🙂

  5. Talya
    5th September 2017 / 8:45 am

    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

    • Clairejustine oxox
      7th September 2017 / 7:44 pm

      Thank you Talya. We are getting our heads around it now. I think it will make us all healthier in the long run as I keep buying healthier fresh foods for us all and avoiding things she can't have.

  6. pinkoddy
    5th September 2017 / 8:52 am

    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.

    • Clairejustine oxox
      7th September 2017 / 7:48 pm

      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
    5th September 2017 / 9:18 am

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

    • Clairejustine oxox
      7th September 2017 / 7:49 pm

      Thank you Cathy. I can not wait to get our next appointment through to see what they can do for her.

  8. Heather{Our Life In a Click}
    5th September 2017 / 1:37 pm

    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).

    • Clairejustine oxox
      7th September 2017 / 7:50 pm

      Thanks Heather. I am thinking once I have my head around it all to start going Gluten Free too. She will be a lot healthier in the long run. She use to love eating bread and all this has changed now.

  9. mummabstylish
    5th September 2017 / 3:04 pm

    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

    • Clairejustine oxox
      7th September 2017 / 7:52 pm

      Thank you Jacqui. It is all so new to us at the minute. I am going to see someone I know who has 3 girls with coeliac this weekend. I am looking forward to her helping us out x

  10. Sophie's Nursery
    5th September 2017 / 5:34 pm

    Oh so sorry to hear that 🙁 She sounds so strong tho, wishing you all the best x

    • Clairejustine oxox
      7th September 2017 / 7:54 pm

      Thanks lovely. She is so strong, still after 6 day and even though she is not eating as much as usual as she doesn't like the things. She remains so positive 🙂

  11. Five Little Doves
    5th September 2017 / 9:43 pm

    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

    • Clairejustine oxox
      7th September 2017 / 7:56 pm

      Thank you Laura. It is great to hear this will get easier. We are finding it hard at the minute but I know we will get there 🙂

  12. Judee Algazi
    6th September 2017 / 1:04 am

    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.

    • Clairejustine oxox
      7th September 2017 / 7:56 pm

      thank you so much Judee, I can not wait to make some of your yummy recipes for her now 🙂

  13. Kara Guppy
    6th September 2017 / 7:29 am

    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

    • Clairejustine oxox
      7th September 2017 / 7:57 pm

      Thank you Kara. I find lunch boxes the hardest. She use to love bread but can not eat Gluten Free bread at all 🙁

  14. Baby Isabella
    6th September 2017 / 10:38 am

    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

    • Clairejustine oxox
      7th September 2017 / 7:58 pm

      Thank you. You do not get as much for your money, do you. I think we will be better when we do lots of our own recipes but the flour is expensive too.

  15. Mother of 3
    6th September 2017 / 11:57 am

    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!

    • Clairejustine oxox
      7th September 2017 / 8:00 pm

      Thank you lovely. My Daughter loved all these foods and the Gluten Free ones are not the same. She is finding it hard work eating bread that she once loved.

  16. Kezzie
    6th September 2017 / 9:28 pm

    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

    • Clairejustine oxox
      7th September 2017 / 8:00 pm

      Thank you Kezzie. So far I have found that Tesco have the biggest range 🙂

  17. Stephanie Moore
    7th September 2017 / 7:54 pm

    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

    • Clairejustine oxox
      7th September 2017 / 8:01 pm

      Thanks Stephanie, this is a big help! I use Pinterest a lot but never though of looking here 🙂

  18. Alex
    7th September 2017 / 8:26 pm

    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

    • Clairejustine oxox
      11th September 2017 / 7:29 pm

      Thank you for stopping by Alex 🙂

  19. Angela Milnes
    7th September 2017 / 11:48 pm

    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!

    • Clairejustine oxox
      11th September 2017 / 7:29 pm

      Thank you Angela. I love Pinterest 🙂

  20. Cheryl
    8th September 2017 / 9:06 am

    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

    • Clairejustine oxox
      11th September 2017 / 7:32 pm

      Thank you Cheryl 🙂

  21. Louisa
    8th September 2017 / 1:10 pm

    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

    • Clairejustine oxox
      11th September 2017 / 7:37 pm

      Thanks for the comment Louisa. Oh wow, I never thought of lip salves or I wonder if lip stick contains it now!? I am wondering if now I will be tested or my hubby and other children.

  22. Catherine @ Story Snug
    11th September 2017 / 9:05 am

    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 🙁 )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

    • Clairejustine oxox
      11th September 2017 / 7:42 pm

      Thank you so much for the comments Catherine. We are getting there and have some recipe books now so can not wait to get making some up 🙂

  23. Jayne SMABL
    11th September 2017 / 11:45 am

    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 🙂

    • Clairejustine oxox
      11th September 2017 / 7:45 pm

      Thank you Jayne. I am looking forward to hearing more when we go back to the hospital again.

  24. Kim Carberry
    11th September 2017 / 12:51 pm

    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

    • Clairejustine oxox
      11th September 2017 / 7:46 pm

      Thank you Kim. I am really impressed with Tesco range 🙂

  25. Debbie Roberts - Debs Random Writings
    17th September 2017 / 5:39 pm

    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

    • Clairejustine oxox
      6th October 2017 / 10:24 am

      Thanks so much Debbie 🙂

  26. Kate Glutenfreealchemist
    30th September 2017 / 5:44 pm

    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

    • Clairejustine oxox
      6th October 2017 / 10:27 am

      Thank you so much for this Kate. I never thought of doing that in Mcdonalds, he would love this 🙂 Hopping over now to check out your blog ( sorry for the late it's been a really busy week )

  27. Stephanie 139a
    1st October 2017 / 3:49 pm

    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

    • Clairejustine oxox
      6th October 2017 / 10:35 am

      Thanks for stopping by Stephanie 🙂

  28. Le Coin de Mel
    6th October 2017 / 1:17 am

    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.

    • Clairejustine oxox
      6th October 2017 / 10:36 am

      Thank you 🙂 We are getting there slowly. I am enjoying baking her nice ad yummy treats 🙂

  29. REBECCA SMITH - Glutarama
    6th October 2017 / 3:04 pm

    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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