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Does anyone know anything about Coeliac's Disease?

(38 Posts)
heavenlyghost Sun 26-Dec-04 09:13:58

I think that is how you spell it ...
I took DD to the doctor last week as I suspect she is either allergic or intolerant to wheat.
I won't bore you with the whole long story but the doctor referred us to a Paediatrician who saw us on Christmas Eve (WOW ... the wonders of health insurance in NZ!!).
He wants DD to have full allergy tests and wants Coeliac's Disease tested for to eliminate it.
I told him that I had thought that babies with CD were really poorly and didn't thrive and no one could describe DD as that but he said there were varying degrees of CD ... Does anyone know if this is true?
A friend of mine told me that someone he works with has CD and is quite bad now but as a child she was fine ...

Any info/personal experiences would be gratefully received ....

Ghosty xx

heavenlyghost Sun 26-Dec-04 19:19:38

Bump ... anyone?

Pagan Sun 26-Dec-04 19:26:45

I think it means that you need a wheat and gluten free diet. Only know 2 people (albeit distantly) with it. I tried googling it and loads of info came up so probably worth a look - sorry I'm not much help

MrsBigDrumsADrumming Sun 26-Dec-04 21:50:37

heavenlyghost : my friends ds was diagnosed with coeliac disease 14 years ago when he was 1 year old when he got diarrhoea frequently. It basically meant he had to follow a very strict diet (gluten free I think) with no normal flour etc. But nowadays there are quite a few recepies around for that. He had to go back for testing in regular intervals and now his values are all fine and he can eat practically anything.

There are varying degrees of CD as he sort of grew out of his intollerance (then again a 15 year old can 'suffer' a bit of diarrhoea without any major malefects, whereas a 1 year old might dehydrate very quickly).

I'd say just wait and see what the test results come back with.

My dd was tested for all sorts of things including Cystic Fybrosis and CD as she failed to thrive and still is a light weight of 12kg (I think that's not even 2 stone) at 3 years old. in the end they conceded that she's just petite... with an abundance of energy!

ChicPea Sun 26-Dec-04 22:23:40

Hi Ghosty - did you know that you are acknowledged at the beginning of the new MumsNet book??!! Just wondered.

I have coeliac disease and have had it since 15 and was diagnosed at 27. My mother doesn't have it but my grandmother did so it skipped a generation. My symptoms were - sorry - severe constipation, swelling of arms and legs, most notably calves and depending on amount of gluten consumed they could swell to very noticeably large proportions, palpitations, swollen abdomen, legargy, headache and general malaise. I did not look as though I wasn't thriving. Maybe that applies to the coeliacs where they have severe diarrhea?

To be tested for CD the patient has to be on a gluten diet for the tests to show positive. If a biopsy is taken from the large (or small, can't remember)intestine, the villi are infected and stunted and therefore do not absorb the nutrients from food. If the patient has been off of gluten for some months and is then tested, the villi do heal back to their normal structure. There is a blood test but again the patient must be on a gluten diet.

My children are 2.3 and 1.2 and are both on a gluten free diet. I am going to consult a specialist to see where I go from here. I find it very easy to remain on a GF diet and I would happily give this to my children as there are so many gluten free foods on the market(cakes, pizza, pasta, biscuits, bread sticks, etc) although I am not sure how easy it will be when they are older and tempted. Please look at the Allergies thread as there have been quite a few postings on there. I have listed typical menus to one MumsNetter as she wanted to try a GF diet.

If any questions, please post.

kinderbobsleigh Mon 27-Dec-04 00:36:52

They start with a blood test to check for Coeliac markers, if she hasn't been eating wheat this could be equivocal.

Then they do a gastroscopy and take a sample. They are looking to see the condition of the villi, which are little hair like things that trap nutrients. People with coeliac have little or no villi and thus don't absorb their food properly (which is where the failure to thrive comes in). Ignoring the diagnosis can have serious health risks.

If the villi are damaged then you will be entitled to prescriptions for subsidised flour and pasta. If not they will have to look for something else.

My gastroenterologist also tested my levels of lactase, and explained that because they were so low I couldn't digest milk properly, which upset my stomach and meant I then could not digest wheat. He recommended I chose either wheat or milk in the short term and that longer term I should just eat white bread (less fibre)and also have a small amount of milk until I worked out what levels were okay for me.

So you see it could be lots of things and it's great that they are going to do all the tests.

heavenlyghost Mon 27-Dec-04 01:38:11

Oooooh ChicPea, am I really? I can't get the books here so I haven't seen any of them

Thanks for your replies everyone ... really helpful ...
DD's tests are on Wednesday, she has had a bit of wheat over the Christmas weekend ... should I give her some weetabix and toast for the next few days for the test to work better do you think?

She definitely does not have the look of a baby that isn't thriving ... she looks too much like a big round marshmallow for that , but then I cut down her wheat intake only a couple of months after introducing it at 6 months anyway. Up until 6 months her skin was smooth and lovely, she developed a patch of itchy skin around her mouth not long after introducing wheat and at the time I believed she was reacting to her Meningitis B jab.
We worked out that it could be something to do with wheat (or yeast) by accident at 8 months because I went away for a couple of days and DH did not give her any toast and marmite ("You didn't write it down on the instructions!" ) when I was away. Not long after that I stopped giving her any wheat at all and her skin cleared up completely.
I took her to the doctor because a friend gave her a digestive biscuit last week and within a couple of hours her itchy skin returned in a little patch round her mouth and she got a rash on her back.
She has no signs of constipation (FAR FROM IT ) but she does poo several times a day (not diarrheoa though) and it can be quite foul smelling (but isn't all poo foul???)
Hmmmmm ... it will be interesting to see what the results are ...
Kinderbobsleigh ... I saw Sibble this morning and told her I might be joining you in Allergy NZ - LOL!
Unfortunately ChicPea, supermarkets in NZ are NOT like Safeway and Tesco (where I remember there being a wide range of Gluten free stuff) ... there seems to be a sad lack of gluten free food available unless I shop at healthfood shops .... sigh ...
Thanks for the replies again folks ...

singsong Mon 27-Dec-04 11:23:25

look here

kinderbobsleigh Mon 27-Dec-04 19:24:09

Healtheries do a free from range which is in Foodtown.

Dovedale do Gluten free bread, also in supermarket, but will be way down where nobody looks.

One of the Watties beans is gluten free. It says on the label.

www.mfd.co.nz is ace.

But you should give her some wheat every day until the test. Say a piece of toast or a weetbix.

You can be allergic to wheat without being coeliac.

heavenlyghost Mon 27-Dec-04 19:52:44

Thanks for the mfd address Kinderbobsleigh ... Sibble told me about it and I will look.
I know there is some stuff in the supermarkets and the Healtheries crackers are great ...
But it still isn't the same wide range like in the UK is it?
I gave her toast yesterday, poor thing's skin has really flared up today ...

kinderbobsleigh Wed 29-Dec-04 06:44:18

How'd the tests go?

tribpot Wed 29-Dec-04 09:30:25

My DH is wheat intolerant, and a good friend of mine is a Coeliac. She gets quite a lot of wheat-free stuff on prescription, I don't know what the situation is in NZ for that?

DH and I lived in Sweden for quite a long time, where the availability of wheat-free products is also quite poor (although what you could get was generally of better quality than the stuff in the UK). This led us to have to improvise and we mostly cook everything from fresh now as then you know exactly what you're getting. Delia is of course a godsend for this, and it's fairly easy to adapt some recipes that call for flour or breadcrumbs, substituting with corn flour or rice. My other fave website was the Weightwatchers Recipe ones, as you can simply tick a box to search on wheat-free or gluten-free. But you need to be a WW member for this.

Eating out is a tricky one, but your local Coeliac Society should be able to help you out a lot.

Making wheat-free bread is a bit of a pain (mainly because it's hard to keep it moist enough to be palatable) but it can be done, although we just tend to substitute with other carbs like potatoes and rice.

If you're buying processed stuff, it's really a question of reading every label carefully. (At least you don't have to do it in Swedish without speaking the language!). As well as wheat flour, we avoid modified maize starch as it's often been modified with wheat (so they tell me in Sainsburys anyway), and MSG.

Hope things go okay, foul smelling poo is a symptom of Coeliacs but as you say, it's all pretty foul smelling! I guess to rule out the possibility of it being yeast rather than wheat, you could try your little girl on yeast-free bread (soda bread?).

christmaSPODding Thu 30-Dec-04 20:43:42

I'll be checking back on this thread so do let us know what happens with the tests.... we suspect my dd has gluten intolerance too... and she too isnt failing to thrive... far from it. We had blood tests done a few weeks back, but dd already gluten free for some time so doubt they will help.... if they need to retests after giving her gluten, anyone know how long i would have to give gluten for? it causes her such painful nighttime wind that i am very reluctant to do this.... if the tests show nothing what else can i ask the doctors to do, without doing gastroscopy?

kinderbobsleigh Fri 31-Dec-04 10:41:01

I just had to eat half a slice of toast for a week before the gastroscopy. I refused to eat wheat before the blood test (which was not surprisingly equivocal). I would only do it for the test that would rule out coeliac, or qualify me for the prescription flour.

In NZ you need the results of the gastroscopy in order to get the prescription, so I'm not sure if that's the case in UK.

kinderbob Sun 02-Jan-05 08:08:30

Really hope you will let us know how it went Ghosty.

kinderbob Sun 09-Jan-05 18:14:42

Any news Ghosty?

ghosty Sun 09-Jan-05 18:51:00

Hi, Sorry for the delay in reporting back.
DD had a blood test just before new year and a skin prick test on her back for everything. It was ll pretty traumatic because we had to hold her down
The skin prick test showed no reactions at the time and so after 15 minutes they wiped off all the numbers. About 2 hours later one of the points came up as an itchy bite but of course the numbers had been wiped off!!!! So she will have to have another one in a week or so.
No results to the blood test yet though ... normally it is 10 days or so but with the holidays etc we may need to wait a bit longer.
Thanks for your advice ...

MrsBigD Sun 09-Jan-05 19:19:21

those idiots! your poor dd! having to go through all that again!

When I had a pin prick test done on my back I had to leave it on for 24h!!!

They did the arms too and that stayed on for 2h.

Both was done in Germany though about 16 years ago ...

006 Sun 09-Jan-05 19:35:50

A friend is a 'celeriac' as we insist on calling her and because she was not diagnosed until q late in life (not usually a 'black' thing apparantly), has some bone density problems which could otherwise have been avoided, so it sounds really good that you are investigating nice and early!

kinderbob Tue 11-Jan-05 02:15:29

Thanks for the update Ghosty - can't believe that they rubbed off the numbers so quickly.

Ds had some skin prick tests last week, and has had a blood test today. I talked him through it as if it was a trip to the zoo. When the lady didn't call his name (it was take a number - which I didn't realise) he called his own name (the full version - not just Bob)he then asked her her name (pointed at badge and said "name, tell Bob")

We had to pass on the aneasthetic spray, because I hadn't mentioned it to him in advance and he had obviously taken in every sentence of my blow by blow account. He was quite bossy "tickle needle now lady", but also funny "blood red mummy, good colour" and afterwards he said "fank yoo Kate".

He is a male Pollyanna. He wants to go back and have another one tomorrow!

Anyway, enough of that aside. I have found a book by Sue Dengate about Food intolerance (not about allergy, but relevant I think)called Fed Up. She documents clearly elimination diets to find the culprits and she is concerned about antioxidents in the oil used to make bread and also the natural chemicals in stuff like vegemite. It would be a good read for you if the results come back equivocal, as it could be that they are testing for the wrong things (ie wheat when it is something in the oil) or yeast when it is salicilates or amines (can't remember which is in vegemite sorry).

tribpot Tue 11-Jan-05 08:15:00

My step-dad told me recently that the stuff they put in bread to make it rise more quickly now (I don't mean the yeast!) makes it, chemically, not bread at all. Gawd, and they wonder why people are allergic to it! If you're going through the exclusion diet process (dh has been there endlessly) homemade, organic bread might be worth a shot at some point.

Best of luck to all.

kinderbob Tue 11-Jan-05 17:46:03

I can't eat that maize based fibre stuff they put in white bread to make it more like brown bread in fibre content. Gives me a rash over my whole body, a temperature and stomach cramps. That's why I was tested for coeliac, because I had a freezer full of that stuff!

It took me ages to work out that bread was okay if I avoided that ingredient.

What brand bread do you buy ghosty?

spod Thu 27-Jan-05 21:58:11

well... dd's tests results were negative for gluten antibodies... so consultant says she dont have celiac... but since the tests she has accidently had gluten a couple of times (in wheat) and has reacted badly (wind, bloating, pain) every time. Saw consultant again today and he says she dont have celiac cos she is healthy and thriving and all blood levels are normal etc... but they still cannt tell me why she has such painful wind at night or why she is reacting to gluten. They also said that there were no other tests that they could do to test for allergy. Is this true. They did say that they could do a biopsy, but as this involved feeding her gluten for a time and involved a general aneasthetic, I have said no. What can I do... she is obviously reacting to gluten and I need to know why? and then perhaps I can help her with the wind... She has been prescribed gaviscon, but I'm not holding my breath. Any ideas?

alison222 Thu 27-Jan-05 22:04:23

My dad has it. He was 28 when diagnosed and is OK now as long as he sticks to the diet.
He was pretty ill by the time they diagnosed it - lost tonnes of weith, constant upset tummy, finally a rash etc.
Apparently he had always been stick thin as a child and brown bread always gave him an upset stomach as a child but other that that he'd seemed fine.
Don't know how different it is when it manifests in children
It basically means no wheat,oats,rye,barley or any of their derivatives, so special flour bread etc which in the UK you get on prescription if you need it (cheaper that way) but you can now buy a range of suitable foods in the supermarkets too

bobbybob Fri 28-Jan-05 06:18:14

has she had antibiotics? I couldn't tolerate gluten after a course for mastitis.

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