This was first published on the Recipe Resource as a guest post. A shortened version was also shared in my monthly column with the Express and Echo newspaper.
I vividly remember the day our daughter was diagnosed with coeliac disease. We were on holiday in Cornwall and were expecting the call.
It was June 2010, a month before our daughter turned 3, the sun was shining and we had a poorly child on our hands.
When I say poorly, I don’t mean with a temperature, I mean constantly fatigued, bloated and in pain with frequent unpleasant trips to the toilet that were the norm for her.
The week before, she had undergone a general anaesthetic so that the doctors could carry out a biopsy of her intestine.
Before that she had had a positive blood test result for coeliac disease. However, as was the process then (things have changed slightly now), she had to undergo the biopsy to have a confirmed diagnosis, and oh how we agonised over that decision…
When the call came it was a great relief, much like that of when we were told that she had pneumococcal meningitis (a story for another day)…finally we knew what was wrong with her.
As those of you who are parents will know, not knowing what is wrong with your children is the worst feeling in the world. Those nights when you lie awake while your brain trawls through all the dreadful things that could be making your child ill, are the longest and darkest of all.
At last, after a year of worry we had an answer. And, being wheat intolerant myself, it wasn’t so much of a challenge to cook foods that were gluten-free, the only way to manage this autoimmune disease.
The day before the phone call we had taken our daughter for her ‘last supper’ as it were.
We had walked (well, we had walked, my daughter had been carried) along the beach to have fish and chips as the sun glimmered on the gentle sea. It was a beautiful setting for what would be her last meal containing gluten.
It could make us sad looking back at that day, but the transformation that occurred within days of removing gluten from her diet, was absolute.
Her colour returned, her tummy reduced in size by about half, she no longer complained of tummy aches and more amazing than anything, so sweet is the memory, she was able to walk up a flight of stairs on her own and run along the beach, the wind blowing her hair behind her as her shadow chased her.
Gleeful laughs. Splashing fun. Jumping over waves. Chasing her brother.
So, although there are times of sadness, when she goes to parties and has to take her own food; when we eat out with family and all she can have is a jacket potato when everyone else is enjoying chips; when she misses out on an activity at school because it involves gluten and nobody has thought of her…we have to remember how she was before.
And that is the reason behind the Free From Fairy.
To bring some magic into a little girls life; to make her feel special. To share my knowledge of adapting meals and ones life to meet the challenges it presents to those with restrictions to their diets.
If I can help one other person who is struggling to come to terms with a food exclusion then I have achieved my goal.
So next time you meet someone who has to avoid certain foods think about what they have been through and give a thought to how it would make you feel if you couldn’t have something you loved and that everyone around you could eat.
Whether that person has coeliac disease, has an allergy or is intolerant to certain foods, one thing can be assured…that they have suffered in some way and their feelings should be considered.
Oh, I am crying reading this! My son was 20 months when he was “diagnosed.” I put that in quotes because we didn’t do the scope for the intestinal biopsy so all we have to show his Celiac disease is blood test results that are literally off the chart (they stop counting at 100 units of antibodies) for all three antibodies and a gastro specialist looking at him and saying “Oh man that kid is definitely Celiac.” Anyway, I cry because I so identify with your recount of the immediate and remarkable change after eliminating gluten. He is 4 1/2 now and we are so blessed by friends and family who encourage and support him and frequently consider his needs when planning food for their events 🙂 Thank you for sharing your story!
Vicki Montague says
Hi Sarah, thank you so much for your comment and letting me know about your son. It is incredible how remarkable the change is isn’t it? I am so pleased to hear that your friends and family are so supportive…I am very lucky too because we have the same. Keep up your great work of being a fab mum and let me know if you ever try out any recipes..!
Shirley @ gfe & All Gluten-Free Desserts says
Thanks so much for sharing your daughter’s and your family’s story! Sharing this is bound to help so many! It’s definitely a transition, but oh how wonderful that your daughter responded so quickly to the gluten-free diet. 🙂 Off to share …
Vicki Montague says
Shirley, thank you so much for your support. I really do appreciate it so much!
This is such a great post, so thank you! Even though I’m 24 and was diagnosed with coeliac disease four years ago, I still find myself struggling to stick to the diet and getting upset if I can’t eat what I want. Sometimes I feel like I’m a little kid having a tantrum, but it’s easy to feel so left out when my friends all go out for a meal somewhere I can’t eat! I can’t imagine how difficult it must be for children. I’m sure your daughter is much more mature about it than I am!
Vicki Montague says
Hi Jenni. Thanks so much for your comment. I am pretty sure it is easier for Roo than for you. She will never know any different. You know what it used to be like and that makes it much much harder. I hope it gets easier though 🙂
Ahh same feeling from the other side of the world. My daughter’s blood results were phoned through to us at 3 pm on Christmas Eve 2012 just as we were getting ready to go out for an early dinner. She was a few months past her 6th birthday and had been unwell, in reality, for around 2 or more years. I didn’t really believe it could be true even though they told me the blood test was around 95% accurate. We didn’t even know really know that was what they were testing for. Her coeliac antibodies were described as being ‘through the roof’. She was extremely bloated, lethargic, her hair didn’t grow, had become withdrawn having once been very sociaable and no one could tell us why. The biopsy followed in January and we were told it was so bad they could see the destruction with the naked eye. The specialist told me not to wait for the results but to commence the GF diet immediately and so we did, and from that moment forward haven’t looked back. The results of course came through as positive for CD but we were glad we didn’t wait. It’s hard and at times frustrating for us and for her but like you said, when you think back to how your child felt before, it’s all worth it. 🙂
Vicki Montague says
Hi there and thank you for your comment! It is so lovely to connect with others who know what it is like! There are some tough times but it certainly is worth seeing her so much better. I hope your little one continues being well…sounds like she really went through it 🙁
Lovely to read your story but strange as it is so like my daughters story! She was diagnosed at 2 years and 10 months after being ill for a year, we also were told that she had ear infections, constipation etc. etc. but I also trusted my mummy instinct thank goodness. Anyway, to cut a long story short she is now a very healthy 13 year old (where did the time go?) There have been some tricky times along the way where things are just not fair, like you said, it’s really hard when everyone is eating something at a party etc. but overall things are good. I was pregnant with my second child when Freya was diagnosed and the anxiety was dreadful as you said, however I was so relieved to get a diagnosis and know that I could do something that would immediately make my daughter well – to see her get up and walk to her toys and actually play with something was amazing!!! Thank you for all you are doing and carry on the fab work x
Vicki Montague says
Hi Catherine. So sorry it has taken me so long to reply to your comment! I have had a very lazy Christmas and decided to devote my attention to my family rather than being on social media and on my site! I have therefore pretty much had technology off over the last few weeks and am only now slowly starting to accept that life goes back to normal on Tuesday when the kids go back to school! I am so pleased to hear that things on the hole have gone ok with Freya. There are so many things that I dread as Roo gets older but I am sure we will overcome them! It is great to hear from people like you who have gone through all of this before us and have managed so well.
Such a sad but also happy post. i’m so glad that you don’t at least have that horrible worry of not knowing what is wrong. I’m sure life is really tough for your little girl sometimes but she is lucky to have such a creative Mum – the recipes on this blog look AMAZING! #blogclub
Sara (@mumturnedmom) says
This such a beautiful and inspiring post. I can imagine that confirming her diagnosis, while sad in some ways for what she might miss, must have been such a relief; allowing you to move forward positively. I feel very lucky that my children have no issues like this to deal with, but I have friends whose children do and it is a constant worry. I have a wonderful picture of your daughters face when you bake something especially for her in my mind 🙂 Thank you so much for linking this post to #ThePrompt x
Thank you for your lovely comment Sara. Yes, her face is beautiful when she comes home from school to find another tasty treat awaiting her!! Thank you for letting me share my story on your blog.
You have a beautiful blog! The reason I set up my blog was to tell the world about the Specific Carbohydrate Diet which healed my son of Crohn’s Disease. It’s more than gluten free, it’s grain, lactose and sugar free but it worked and he’s now well!
I understand completely how you must have felt watching your little girl suffer and I’m so happy that you are now able to cook delicious food that she will enjoy!
Thank you for visiting my blog
Thank you for your lovely comment! I am so glad I found your blog. I am trying to cut our carbs back so your site is wonderful in giving me ideas of how to cook gluten-free and dairy-free whilst reducing the carbs. Those hot cross buns. OMG they are to die for! Thank you so much for your recipe!
Terry and Andrea says
Reading your post has given us a much greater insight into the impact of Coeliac’s disease on a family. Thanks for a sensitive, well-written article and keep the recipes coming please. T and A
Glad you enjoyed reading it! Hope you had a great time with C! Belated Birthday wishes to you!
This is a beautiful story. I have a 7 yr old who was diagnosed via blood test and biopsy last year. You have spoken to my heart with respect to letting these kids have magic in their lives. I am starting a ROCK (raising our celiac kids) group next month and want to bring that magic to other kids. I bake and make treats for several friends kids that are GF/CF. It makes me feel so pleased to see their happy faces.
Thank you for your lovely comment. Your group sounds like a wonderful idea…well done for sharing the magic! I love seeing my daughters face when I cook something for her. She is so appreciative it makes all the experimenting worth while! Good luck with your group…