Just got the rest of the results Coeliacs

[yawningmonster]

The first set of bloods came back normal, no markers for coeliacs and normal levels. The gene test came back today and is positive for HLA D2 or D8. The letter says that "if *** remains on gluten, it is possible he could develop coeliac disease in the future. Of course it is Friday and I cant get through to paed. Does anyone know the implications of this test?

[bobbybob]

No, but I'm sure someone will be on in a minute that does. How gluten free are you at the minute?

[spikeycat]

Not too sure but my brother in law is a coeliac, and it developed in child hood. He has to be very careful about the things he eats, to the extent that things can't be cooked together if he is allergic to one.
Saying that, it didn't stop him travelling round asia for 3 years.

Sorry can't be anymore help.

[yawningmonster]

we are not gluten free at all at the moment, this is the second time we have had tests but the first time for the gene test. Baby was gluten free until around 10 months when the first set came back negative, I was gluten free (breastfeeding) for a short time b4 this as well. Baby has been losing weight and has low iron both of which could be coeliac symptoms which is why we are back on that path again. Very stressed either way actually, if it is coeliacs it seems so daunting and if its not then why is he losing weight and what do we do.

[spikeycat]

to be honest, with all the gluten free ranges in supermarkets (esp sainsburys) it really isn't as bad anymore. you also get a prescription from the doctor for a gluten free bread, so he makes his own

[yawningmonster]

we are in NZ spikeycat, Im not sure if the range here is as good or whether we would get subsidised as baby doesnt have the markers just the gene to say he is subseptible(sp). I did find it a real challenge the first time we went off gluten to manage to get a good range ( also dairy and nut free) of foods we could afford. Meat and vege and fruit are easy but it is in everything else so it seems, and apparently you have to watch preservatives and additives etc in meats and even sprays on veges and fruits.

[bobbybob]

You need a biopsy in nz to get prescription items. Where is NZ are you?

[yawningmonster]

sorry assumed you knew it was me, changed my name some time back (was Saacsmum)What is the biopsy and if it came back negative would we be pretty safe to assume that this really isnt the issue, Ford is like a dog with a bone and just wont let Coeliac go but I must admit everything else does point towards it.

[bobbybob]

Never sussed it was you! Well it's not going to do much to him over the weekend is it?

I had an equivocal result to my blood test, then had a biopsy and no coeliacs but they did find out that I wasn't producing any lactase. I wasn't tested for the gene, only heard of this being done by Rodney, and always assumed it was more to provide data for his research than for the benefit of the parents TBH.

Surely if anyone eats gluten they could become coeliac. Try not to stress and get some numbers from him on Monday.

[bobbybob]

Oh and if you have the biopsy and there is no current damage then whilst you may want to avoid excessive levels of gluten because of him having the gene (toast for brekkie, sandwich for lunch and pasta for tea) I don't see any benefit to missing out on the nutrition it provides.

[yawningmonster]

thanks, how are things with you two now? Any updates on the nursery debarcle? The whole worry is that he is just so fussy that it would be awful to rule a whole food group our unneccessarily (far too many n,c and s in there Im sure) Arrgh!

[yawningmonster]

yes, we know that gluten definately makes no difference to behaviour but it is the weight loss that has us most worried though then again he will go weeks at a time where he just wont eat so that accounts for at least some of it, having said that he is eating really well at the moment and we have a weight assessment at hospital on the 23rd so will see how that goes.

[bobbybob]

I think the not eating could be a better indicator of weight loss than this whole Gluten thing (especially as it's Rodney's current crusade). I thought the Gluten weight loss thing was for people who ate like horses and still lost weight due to poor absorption.

You say his bloods were fine, okay for iron etc? If he wasn't absorbing vitamins from what he was eating then this would be a problem.

[yawningmonster]

no iron was way down have started suppliments again it could be the fact that he goes on hunger strikes when ever the notion takes his fancy however this is what I mean, I know it is Rodneys disease of the month but he does have a point...
constipation, while rare can be a symptom tick
grizzly, unsettled tick
bloating, reflux, tummy distention tick
iron levels down tick
easily tired tick
motor delay (according to Rodney can be related) tick

[bobbybob]

Has he got the beige cake mix poo?

iron levels down
easily tired
I think these two are related, if you are anemic you get tired.

motor delay
good point.

I think he has to have the biopsy, simply not having gluten isn't going to help long term, because even if he started running around and jumping 10 feet in the air, we all know that children develop in spurts and it could just be coincidence.

[yawningmonster]

no I was talking to you about the pooh on a thread the other day, will get onto hosp and see if they will set up biopsy for his clinic next week (dreams are free, it is worth a try) In the mean time we are waiting for an appointment with paediatric dietician. Yes agree low energy and iron def can be related and also apparently low appetite can be tied to this too so may all just be coincidental. Is the biopsy definitive, ie if negative we can conclude that this is not the problem and move on?

[bobbybob]

Absolutely, if the villi are not damaged and he has been eating gluten then you have nothing to worry about at the moment. The gene thing means that you could still have the worry in the future, but you would know what to look out for.

They take a biopsy, but my gastro guy said that they can see damage at the time most of the time, so you should get something of an answer on the day.

They can also do some other stuff while they are in, which may shed some light.

[spod]

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[yawningmonster]

The gene test was part of a full blood count. They look to see if there is a certain gene which is present in Coeliac cases, it shows a genetic disposition towards developing the disease. All other intolerance tests and levels have come back normal for us too. The biopsy takes a small sample of intestine and examines if the little villi have been damaged which is indicative of a problem with the protein in wheat/gluten products. You could try getting hold of Sue Dengates books one is called Fed Up. She recommends a fail safe diet and then the reintroduction of groups of food. Keep pressing for intolerance tests, we have had allergy tests done but they only tested for anaphalaxis and so we are also unsure where we stand as far as intolerances go

[spod]

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