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[Ziggy]

I was wondering if there was anyone on here who's had to deal with coeliac disease...

It seems my eldest daugther, aged 12, who had some blood test done to check how her anaemia was doing, got results that suggest she has the disease. Of course we have made an appointment for her to see the doctor, which will on Thursday, and we will know more then, but in the meantime I am sitting here considering a possible gluten-free future for her, and wonder if anyone has had experience of transitioning from a normal diet to a gluten free diet. She is also vegetarian and a fussy eater, so I'm a little worried.

 

To top it all, my mother just called and tells me that my sister (who is a nurse) says my daughter can't possibly have coeliac disease as she is so tall, and that if she had the disease she'd be small, and they're both suggesting the doctor is totally wrong and I should demand a re-test...

Is it possible for a tall, normally growing person, to develop this condition? Or do only small, slow growing people have it?

If anybody has any experience, or knows of some good support links, I'd love to hear about it...

 

Thanks.

[The Dogmother]

Not much help at all, but I am small (we've met, so you'll remember) and don't have coeliacs. A friend who does have it is nudging 6'!

 

An urban myth perhaps.

 

I hope that you find the information that you need - there must be various forums out there for the condition.

[Snowy]

I know all sorts of people with coeliac - some developed it at a young age, others when older. I've never heard that height has anything to do with it Until diagnosed, growing youngsters will often be shorter and undernourished, but once diagnosed and the diet corrected, they shoot up. It doesn't mean that a normally developing youngster can't then develop the disease. I understood it was genetic. If her diet is largely home cooked food, it will be a lot easier to accomodate any changes. Gluten is present in so many preprepared foodstuffs it's unbelievable. Go to Coeliac.org.uk for more info. They also do a 'bible' of every imaginable food and whether or not it is gluten free.

[Seagazer]

This is very interesting as I've been wondering for a while if two of my children may have this. DD has been constantly to the docs, they put it down to IBS. She has so much pain. YS has upset tummy so often and ulcers etc which is also a symptom, he's got tooth enamel problems and she has lots of joint pain. Hmm. Think I will get him to keep a food diary and what happens bathroom wise. He's had to go behind a bush when we've been out as its all so urgent.

 

Good luck, the website seems quite good and had quite a bit of information. I hope your DD is okay once you sort the diet out.

[Mrs Webmuppet]

I think one of my friends has this and she's nudging 6 foot tall, I know she is on a gluten free diet. I will drop her an email and see if she has any wise words for you.

[Hen Watch]

You can get a list of all Waitrose own-label products that a suitable for gluten free diet posted to you. Not sure if other supermarkets have similar.

http://www.waitrose.com/food/healthandnutrition/specialdiets/coeliacdisease.aspx

 

Also found on their website Recipe Search facility, and you can click on both Vegetarian and Gluten Free and see what it comes up with for ideas.

http://www.waitrose.com/recipes/search.aspx

[Ziggy]

Thanks everybody

The coeliac.org.uk website was good, I registered as a member on it, and they also have local support group with events listings...

The waitrose link is great too... I shop mostly with Ocado, so that will be extremely useful...

 

From my online research, people of all sizes and ages can be diagnosed, and a lot of people probably have the same condition but are undiagnosed, or wrongly diagnosed with IBS... which I've had for years actually, so now DH is keen to have us all tested!!

 

Thanks again, I knew people on here would come up with some good tips ... it always puzzles people when I mention finding info on the omlet forum, always have to explain it's about much more than just chickens!!

[Cooks]

I was tested for this due to a bowel condition I have, but as far as I can remember they told me that the reading would not be accurate if I didn't eat food from all the food groups and as I was not eating meat at the time, and I eat very little dairy it wasn't really that much use..

 

I would maybe ask them to specifically test for this, as there is a specially Coeliac blood test. If other blood tests have triggered the alarm as it were I would assume you would have no problems getting them to carry this out.

 

Good Luck.

[Snowy]

Good luck with it Ziggy, hope your DD has an end to her symptoms soon!

 

PS when my friend's son was diagnosed, she also found the co-op very good. All their own brand foods are well labeled. If ever in doubt - ring the helpline number on the food packaging. When she visits and I am in doubt about anything, I give them a ring and, more often than not they can actually help!

[Janty]

I know that we had a girl at our school with coeliacs a few years ago and she was a normal average height for her year group. Not small at all. I don't know if she was typical or not.

 

Sorry I can't be more help.

[Lewis]

My nans sister (great aunt?) has had it for years and in the last month, her other sister has been diagnosed with it too - both are tall.

 

She gets food on prescription but she doesn't like a lot of it do has stopped getting it. They get a flour mix thing which you can use to make cakes + bread etc, apparently thats good

She gets cakes + bread from Asda, but only some of them have the whole range - not her local one

[Karen & co.]

Hi Ziggy, I have coeliac disease, diagnosed a few years ago. I had an initial blood test due to continuing anaemia, and then went on to have a gastroscopy, which I wonder if your daughter may need at some point?

 

Please feel free to e-mail me if I can help with ideas as I'm a veggie too!! one by choice one by accident

 

Hope you get some answers too. I'll message you my e-mail as I don't log on here very often at the mo due to lack of time etc. but when I saw your message I wanted to pop a reply off

 

Take care,

 

Karen x

[whoopsie]

Hi Ziggy

 

As karen has said your daughter with probably need further testing - our family had to have colonoscopies (Dad and Grandad are coeliacs). As far as I know the blood test isn't enough. Dad's anaemia was one of the first real signs something was wrong though it took 5 years to get the diagnois (at first they said he had pancreatitis, must be an alcoholic, and was going to die - thanks medical profession!).

 

The transition isn't that easy but it's manageable and one you get the hang of it it's fine - Dad has a seperate fridge with all his products in it to avoid cross-contamination and Mum has made a lot of general things gluten free to make things easier. I have to be careful when they visit so I don't feed him the wrong thing.

 

Eating out can be a nightmare but you can find places that will cater for her needs. The support from the coeliac society is great and their little book of safe foods has become Dad's bible!

 

Good luck with it all - if it's coeliac that's the problem your daughter will feel a lot better soon!

[theherd123]

Hi Ziggy

 

Just to say if your daughter is coeliac she will be entitled to food on prescription - bread, pastries, pizza, gulten free flour etc 2 of my friends are coeliac and they get these products.

My daughter has a number of allergies including wheat but she doesnt qualify for specialist prescription foods. as a result we buy wheat/gluten/egg/dairy/peanut free food in supermarkets and it costs us a small fortune.

[Ziggy]

Thanks for the feedback everyone... it seems to be quite a common thing...

From what I read she might need some kind of biopsy to have it confirmed, yes. Not really looking forward to that, as I guess it might involve general anaesthetic...

 

Karen, thanks for the email, I'll be in touch, as the mix of coeliac and veggie seems to bring it's own share of issues too (most of the quorn and soy mince and all that seems to have wheat in)...

 

It's good to hear that the transition can be done and we can get used to it... obviously it's still not sure she's got it, but I can't help thinking about it constantly, with all the things she likes coming to mind all the time and wondering if they are ok or not... must have googled so many products just today, my mind is turning mushy from all the info...

[penelope]

Hi There

 

Sorry to hear that you have had the first part of the diagnosis for coeliac ( they do usually but not always do the gut biopsy to confim it.)

 

I have been confirmed as coeliac for nearly a year now & I do not eat meat either.

 

I was a bit worried about what I could/ not eat at first but the benefits of beeing well & no longer having malabsorbtion etc far out weight the inconvienience.

 

Coeliac uk are great for info. I carry their little book with me which is a bible that tells you what supermarket lines etc you can eat.

 

I grow most of our food on my allotment & have always cooked most of our meals from scratch so its really easy to substitute the flours etc for g.f. ones that you can have on prescription.

 

Quorne fahita pieces are yummy, tesco/sainsbury veggie saus are great too.

 

You can make scrummy cakes & biscuits( shop oneas are pretty yuk by comparison!)

 

I have only joined this forum yesturday but please feel free to contact me if you need any more help. Being diagnosed was the best thing ever as I am now far less ill than I have been for years..........and sadly I am now also putting on weight too & getting fat for the first time in my life!! Who cares!

 

Take care

[Lesley]

Although not coeliac, Lauren had to be wheat free from the age of 5 until just before she was 12. Once you've got your head around it, it becomes second nature. Some of the bread available now is almost edible

 

I found it easier to buy food from Goodness Direct, they have lots of Search criteria and good labelling and info.

 

Carl's Mum wasn't diagnosed until she was well into her 70's - although she does eat meat which makes it a little easier.

 

I bought a good cookery book - I'll PM you the details when I catch up with the book.

[Ziggy]

Thanks Lesley... I buy stuff from goodness.direct from time to time, hadn't thought of them just yet about the gluten free... will check their website again...

It's a relief to know there is so much support, so many websites, books, info and so on out there... makes the thought of having to possibly change her diet much more bearable... I still get those moments when I think of something she really loves that she might never be able to eat again and it makes me really sad, can't bear the fact of her being deprived of anything (bit dramatic maybe, but she is my little girl and I guess no mum likes the thought of her child not being able to share her friends' birthday cakes), but I am getting more confident that we could handle it and I could make her eating life pleasant and fun after all...

 

Appointment at doctors tomorrow morning to discuss blood test results and where we go from here...

[Lesley]

Re parties etc. - Lauren used to take a small something with her that she could eat at cake time......a small gf cake or a home made flapjack.

 

(we did contact a pizza place a few years ago to see if they catered for wheat free diets.....they didn't and were extremely unhelpful. We were visiting my sister and didn't have any choice over where we went so we took a jacket potato wrapped in foil in my handbag along with a lump of cheese. We paid for a salad for Lauren. The restaurant appeared to be run by 14 year olds ( ) and no-one said anything - we were a fairly large party and the rest of us all ordered off the menu. I think most restaurants now have something suitable)

 

The book I found helpful is Wheat-Free Cooking by Phyllis Potts ISBN 1-885223-77-3

It does have just a few recipes using other grains which are acceptable for the wheat intolerant but would be best avoided by coeliacs.

[whoopsie]

If you are wanting to eat out for a treat we have been to the chain Frankie and Benny's twice (both times for Fathers day) They are really knowledgeable, let the manager know as well as the chef and made sure Dad's food was safe for him! Very impressed indeed!!

[fluffyknickers]

Hi,

 

My daughter is 3 and a half and has always had stomach issues fron newborn.

 

Firstly she was dairy free, then egg and soya and now wheat (Not Gluten). She had blood tests for coeliac however they came back a false negative as her immunity is low and this affects the results (its more in depth than that but thats laymans!).

 

Before christmas we went to Great Ormond Street and she had an endoscopy, colonoscopy and they took some biopsies and tested for coeliac among other things. It came back negative for coeliac but now off wheat (you can have one without the other). So she can have things like oats but no wheat like breads, biscuits etc. However most of the things I buy that are wheat free are in fact gluten free.

 

The bread is yucky however the best bread I have discovered is from Lakeland and its one you make yourself by adding water and leaving to rise then baking - I then cut into slices and freeze. You can also make cakes, wraps etc from this mix - all on the box (this does contain some soya).

 

I also order a LOT of stuff on line from goodness direct and other sources.

 

The best things are from Dove Organics as my little girl can enjoy their choc biscuits, treats and their pasta is great.

 

I have found things like roast dinners and the typical meat and two veg meals are great as not involving wheat/gluten but I assume this will be harder as not a meat eater. All the shops like Tesco, Sainsburys have great selections of things it just takes a lot longer for me to shop as I have to read EVERY label as they are often labelled GLUTEN FREE in large letters but then have to check for egg, dairy etc.

 

Its hard to begin with but you soon get used to it and its worth it as they feel so much better.

 

Sorry cant help you with the growth bit but I should imagine anyone can have it regardless of height/weight, its just more common in smaller people as the weight doesnt gain as easy.

michelle

 

michelle

[Ziggy]

I can imagine how hard it must have been to adapt to no dairy and egg too... I've always been used to checking labels to some level, as we are vegetarians, so our diet has never been 'anything will do', and I think that will help in dealing with a gluten free diet, but the thought of having to check for dairies and eggs too would be very daunting to me!! At least Jen could still have cheese, which she likes a lot.

Thanks for the Dove organics tip, I didn't know about it... read up a bit more about the mix sold by lakeland and it does seem to get good reviews, so definitely putting that one on the list of things to remember too.

[whoopsie]

Most of the Kallo products are gluten free and they do excellent gravy powders. Discover are pretty good too if she has adventurous tastebuds. I have a good bread recipe if you would like me to email it to you - it's done in a bread machine with a gluten free programme.

[Valkyrie]

If you are cooking with gluten free flour, make sure you get Xanthan gum - it helps bind things together. I used to make mince pies for my dad - he was a coeliac - and it made the pastry almost normal, otherwise its very crumbly. Look for the Free From sections in the supermarkets, although I found Morrisons pretty bad for gluten free products here. Waitrose did the nicest bread (although my dad did try and sneak proper crispy bread now and again).

[Snowy]

You are going to get information overload Ziggy!

 

Cakes made from the Juvela gluten free 'flour' are yummy, and I find the gluten free pasta tastes just the same as normal.

 

My friend has extensive experience now of holidaying with her little boy - she contracts the chefs/cooks at wherever she is going and has found the majority to be delighted to cook up something special for her son. She had a whole week at Butlins and he had a 'special meal' done by their restaurant every day!

 

Her only let down is chips from the chip shop. They are a no no as they are cooked in the same oil as the battered fish