Newly Diagnosed Coeliac family member

[cathy79]

Hi everyone, I haven't been around much - just so busy with work and family.  When I do come on, I quickly scan posts, grab a quick recipe, and jump off.

Some news from us - our 6.5 year old has just tested positive for coeliac disease.  We are trying to decide whether to have the confirmatory bowel biopsy - it is a tough decision.  She tested very high, and the paediatrician is 97% sure so I'm not sure whether to put her through it or not.

The fantastic news is that it could account for a lot of her health issues - she is the size of a 3 year old, didn't walk till 25 months, only just started to jump.  She has significant gross motor and fine motor delays, and has been diagnosed with a minor intellectual disability.  But our "team" of specialists think that we could see significant improvements if we take her off all gluten.  This could be the answer we have been looking for for 6.5 years!!

Yesterday I made Cyndi's gluten free bread for a demo that I did, and it received rave reviews.  My daughter has been off all rice for a year as it was making her sick.   So today I convered a soghum and tapioca flour bread recipe that I think is very passable.

So, my fellow forum members and those who have family members with coeliac, any thoughts on whether to have the biopsy?  What is your go to source on information and recipes?  Quirky Jo is has been our favourite blogger for a long time, so any other ideas?  They don't have to be thermomix related.

[fundj&e]

It saddened me to hear this news Cathy . good luck with whatever you decide to do

[kylie]

My 17 year old daughter and myself were diagnosed earlier this year. I love the TM for making gluten free food - it really does make the job easier.
We do use a lot of rice flour, and rice itself... I have a couple of favourite bread mixes that are fantastic for being like "real" bread but I'd say they have rice flour in them. You never know... without the gluten your daughter may not be sensitive to rice any longer.
My daughter did have the endoscopy. She was diagnosed first. I haven't. What that means is that she has a formal diagnosis and I don't. The endoscopy is apparently the 'gold standard' for diagnosis. I spoke with my doctor about it, and asked whether it was necessary for me to have the biopsy or not. We decided that because we knew that I was intolerant to gluten, and I felt worse for eating it, and better for not eating it, and I was prepared to follow a strict gluten free diet anyway, that the biopsy served no purpose but to complete the paperwork.
I'd suggest joining the coeliac society - they are great and you get a fantastic welcome pack of sample products. Your doctor has to sign off on the membership forms so if he/she is prepared to sign off on the diagnosis without a biopsy you'll be fine.
I'd suggest you will definitely find many improvements in your daughter's health. Coeliac disease has so many unrecognised symptoms, including motor skill issues and developmental delays. I know now if I am accidentally given gluten I become very clumsy, dropping things or running into things for the next few days, and have a strong sense of 'fuzzy headedness', like I can't think straight. My daughter says her balance is severely affected. So it's not just all about gastrointestinal symptoms.
Make sure you read up lots about cross contamination. It's a big issue for maintaining a gluten free diet, and while it sounds daunting in the beginning to have separate cooking utensils once you are set up it's no big deal. If your doctors have suggested a visit to a dietician, choose one that specialises in coeliac disease. They, along with the coeliac society, will teach you how to read labels quickly and easily so you know whether that food contains gluten. If you are in Vic, Shepherdworks is fantastic, and their website also has quite a lot of info.
Quirky Jo's recipes are a favourite of ours too. There are heaps of blogs that are coeliac related and the recipes are often easily converted to thermomixing. Sue Shepherd's recipe books are great (she is Shepherdworks).
Well that's my essay for the day! Feel free to contact me if I can help further.

[cookie1]

Cathy I do hope the diagnosis helps your daughter. For breads could you use sourdough recipes? If so I suggest Yoke Mardewi's books. They are very good.

[judydawn]

Cathy, it was lovely to hear from you again but not the news about your daughter.  Kylie has certainly given you some very important information there so hopefully you can decide whether to have your DD fully tested or not.  Great to learn that a lot of problems can be overcome with going off gluten though - it would be great to see your little one go ahead in leaps and bounds now that you know what the major problem is. 
Brazen's blog has a lot of GF recipes on it too.
Wishing you and your family all the best - please come back and let us know when DD is showing signs of improvement from a change in diet.

[cathy79]

Thanks for all the encouragement ladies.  I've been playing around with sorghum flour, and it is working well in conjunction with arrowroot and xantham gum.  Our bread is surprisingly nice, not at all what I expected.  And I made some apple muffins tonight as well.  DD is taking it all very well - she knows that different foods make different people sick , and we're just trying different things to help her.

We'll probably try rice in a few months and see if we can reintroduce that.  It would make life a bit easier.

Does anyone have a recipe for gluten free flour that I can make up and have in the cupboard?

[AmandaN]

I took my almost 4 year old to the paed a couple of weeks ago to follow up with him on how he is coming on with his speech delay.  he ordered a blood test to check his chromosomes, and his coeliac serology and genetic markers.  he called this afternoon to say his genetic marker was positive.  he only weighs 12.5kg.  we will be off to the GP for his immunization in the next couple of weeks and will discuss whether we need to go for further reinvestigation (not a good thought as he just had dental work done under general in a day hospital), or whether we might just try the gluten free diet anyway.

[cathy79]

Amanda, I hope you get some new soon.  My 6.5 yr old dd is about 15kg, but well covered for her height as she's the height of a 4 year old.  I have read in a few places that gluten free can really help with speech development.

[hools003]

So glad that you have found out what was wrong with your daughter Cathy, have you decided if you are going to get the biospy?
My Dad was diagnosed about 8 years ago, and then, there was not a lot of choice in the shops, whereas now it is fantastic what you can get.
If you take her off gluten and then decide to get her tested, the tests can come back negative! You have to be having gluten in your diet to be tested, if that makes sense. Apparently it is hereditary.Good luck with whatever you decide to do.

Amanda, hope you get your son sorted too.

[cathy79]

After much deliberation, we've decided to take DD off all gluten.  We have family members who tested negative but got very very sick eating gluten, so it's difficult to put too much stock in the test.  We'll see what happens and keep our fingers crossed.

[judydawn]

Good luck with it then Cathy.