Does anyone know anything about Coeliac's Disease?

[heavenlyghost]

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

Ghosty, have a look at dermititis herpetiformis which is a skin complaint related to being allergic to gluten. Can't do any links but I am sure if you google it you will find a lot of info.

Hi there. I am new on here (only joined today ), and am just going thro some posts of interest. This one caught my eye!!
I have 5 kiddies, three of whom have allergies, the youngest being the worst. He is 2.5yrs old, and is on a coeliac diet. He hasn't yet been confirmed as coeliac tho. He was a sickly baby, suffered from very bad reflux, and was in n out of hospital for his first 6mths. He then, on weaning, started to get more reactions to things, and really bad diarhea(sp?). He also used to (and still gets on relapses with diet) a very swollen tummy. He also gets very bad wind.
Anyway, they did all blood tests and skin prick tests for coeliac and wheat allergies but all came back inconclusive. The skin pricks tests, like yours, were rubbed off after just 20mins, and he then reacted after 1hr!! BUT, my paed said to me that coeliac tests are notoriously inconclusive, and she has had to test many kiddies more than four times before a positive diagnosis can be made. We think my son is in that same catagory, and it may be that your daughter is too. At least my paed recognises that tho, and in the meantime is giving us all the right foods until he starts to grow more normally. At which time, we will swap him over to a normal diet for a while, so that we can do more tests.
There are many good coeliac sites around, I found most on search engines, and they can recommend some good books on the subject.
I hope this helps.....xxxxxxx

we have just taken our dd back to our gp, who specialised in gastro-intestinal stuff. Although dd had blood tests for coeliac done in dec (which were negative, but then she was gluten free diet by this time anyway, so no surprise), he is sending her back for repeat tests.... but new ones. Apparently, new coeliac tests have become available in the last couple of months that are considered more accurate. The blood tests form says she will be tested for IaG levels and 'tissue transglutamase' I have no idea what these things are, something to so with autoimmune resposes.... hope this helps

My dd 10yrs has coeliac disease. She was very poorly from about 18mnths. Had a blood test aged 3.5yrs this sujjested coeliac disease but she had to have a biopsy to confirm it. Never heard of skin pricking to test for coeliac disease, thought they were for allergies. All tests however will show a false negative if the patient has stopped or reduced gluten intake.

I havet heard of skin prick tests for coeliac either, gluten allergy though perhaps? my dd is definately sensitive to gluten, although dont know yet whether it is coeliac. Am having to give dd gluten this week as blood tests are next week. At least she likes her choccie biscuits and toast!

Well, the results of the coeliac test came back negative but DD is definitely not happy with something that is in wheat products. After 2 months of no wheat at all the paed said I should just try bits ....
Biscuits ... fine
Crackers ... fine
Bread/toast ... okish but a little flare up around her mouth
Bread/toast AND vegemite ... slightly more of a flare up
Weetbix .... massive flare up ....
I have done this over a period of 3 weeks.
So, she is having baby muesli for breakfast ... still has wheat in it but no flare ups
As snacks she has fruit and crackers (rice ones) and as special treats I will let her have a couple biscuits.
She has a dead boring diet as I daren't try pasta.
Ho hum!

Do you think she is reacting more to some things (Weetabix) than others (biccies)? Or is it more a question of the reaction getting stronger as more wheat goes through her system? The Vegemite reaction makes me wonder if it's maybe a yeast thing ... (assuming Vegemite is similar to Marmite) - although not sure how the Weetabix would fit in with that.

You can always give her wheat-free pasta, it ain't cheap but it's reasonably okay. We like the rice & maize spirals as they seem to do a good job holding together in a pasta-like way.

I wouldn't worry about her diet being monotonous, it's very hard work identifying all the triggers for a food intolerance and it'll take time before you can get to a more 'normal' variety.

Maybe it's a processing issue. A lot of allergens are worse in their natural state. For instance bob can have spagetti in a can, but normal fresh tomato cause a reaction. It's something to do with the proteins being altered.

So biscuits are very processed, bleached flour etc. I don't know what sort of bread you used - but it would have been made with strong flour (so more protein). Weetbix are very unmodified hence the reaction. Baby mueseli is also likely to be highly processed.

So pasta could go one way or the other, strong flour on one hand, but white processed on the other.

This is my latest theory.

Good point Bobbybob ... thanks.
I have decided not to worry about it as she won't eat anything I give her at the moment anyway .... toddlerdom has started I fear and there is a control thing going on .... grrrrr
The bummer is that she LOVES vegemite on toast and vegemite sandwiches .... if I could give her that then my worries about her not eating would be over!
I buy the Freya's brand of bread, the Light Rye or the Wholemeal Grain variety. White bread is banned in our house on account of DS love of it and his problems in the toilet department (needs to eat as much fibre as poss otherwise he won't poo for days and days).

I think for the purposes of research you should try some white bread. Maybe freeze the rest. After all if she was eating gluten free bread your ds wouldn't be allowed that would he? Try Nature's Fresh as it has no additives to complicate the result. Bob reacts very strongly to rye, is rye listed as an ingredient in both loaves?

As far as vegemite goes, there is another one in the special food section of Foodtown or at health food shops that is (I think) yeast free. I don't know the name. You could try that.

i need a rant.... after being so fed up with unhelpful pead, i went back to my doctors and saw a good guy.... who told us that these new tests for coeliac exists (and in fact did when dd had her last tests in dec 04) so referred us back to hospital for these tests, which we had done yesterday. I had to feed dd gluten for a week (not nice for her, bad nappies and more pain for her) although he did prescribe an anti spasmodoc for her too, so the week could have been worse. The blood tests went terribly, had to hold dd down while she screamed for 25 mins cos they couldnt get the blood out (nurses had put anaethetic gel on hand rather than arm). Then today, I get a really patronising letter back from the pead at the hospital (whom i have never met because we've been fobbed off to his registrar.) I wrote to the pead 6 weeks ago to say that i wasnt happy being told that dd didnt have coeliac (given that she had been gluten free when tests were done so inconclusie) and basically told to sod off. I told them that i think it is something else and need them to find out what... he has written a load of patronising crap about how dd is bf so got a good start in life, is healthy according to height and weight (she would be, since was gluten free and so nutritional uptake never likely to have been that affected by gluten). THEN, he said he is concerned that dd is on a gluten free diet!! IT CAUSES HER EXTREME ABDOMINAL PAIN!!! feel like they are not listening at all! anyway, we now have an app to see another pead who apparently specialises in gastrointestinal stuff, so at least that may help us. I am angry that these doctors didnt know about the latests tests for coeliac and that we have been fobbed off while dd is on agony every night. Sorry needed a rant. thanks for reading.

Hi everyone
Just wanted to say that the reason for a lot of allergies today is the supermarket food we eat contains a lot of pesticides and insecticides and synthetic preservatives and colours. It's not natural food anymore!
Our digestive systems are taking the brunt of these chemicals plus the water we drink also contains chlorine and other substances because of our polluted environment. If we try keep our digestive systems in healthy check by eating "greener" food (organic) then we can maintain better health. Modern processed wheat isn't digestible by many people because of the proteins as well as pesticide sprays used to keep bugs away from crops. Milk has also been processed, heat treated and the cows given anitbiotics to keep them healthy free from disease. All this is also going into your system!. The best thing for your bodies is certified organic food and skin care products that do not contain synthetic chemicals and preservatives that are actual poisons in our bodies. A lot of these chemicals being used in our food (as well as cosmetics and skincare) are known carcinogens. I have put my girls on a product called Inliven which is a probiotic superfood which helps line their digestive systems with good bacteria that do the job of cleaning out their guts and providing necessary nutrients in their bodies, as like most kids they have their fair share of junk food! It is available worldwide and is helping people with autoimmune disorders which springs from an unhealthy digestive sytem. You should see a naturopath/homeopath who can do what is called a live blood microscopy. That is, they take a blood sample from a finger prick and analyse it under a microscope and you can see it on a tv screen in front of you. It shows how healthy or unhealthy your blood cells are and they can tell what nutirents may be missing from the diet.
There are a lot of books out that you can read about the chemicals in our food, skincare, haircare and cosmetics, plus how to keep a healthy digetive system. Personally I support the certified organic farmers as they are helping to bring back growing food the natural way without chemicals and ways that don't upset the environment.
I hope this helps give you an uderstanding of what we eat affects our body. I suffered from a lot of wind pain, bloating etc but have been doing detox diets to rid myself of the rubbish in my body and now am taking the "Inliven" to maintain a healthy digestive system. My girls take it as well to help keep their immune system in check.
You can email me on [email protected] or check out my website www.onegrp.com/?suzette