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Non invasive intolerance test?

(27 Posts)
smudgedlipstick Sun 13-Nov-16 20:55:58

We haven been referred under paediatric care for 18 months and have been referred again to a top gastro paediatrician, and all they keep doing is prescribing different medicines to make her go to the toilet. She has been off dairy as they think she may have an intolerance for over a year, this is made no difference. I have been told about a non invasive intolerance test which uses frequencies to test all food groups to determine what her intolerances are, has anyone had this done it and it be effective? We have tried excluding all food groups and it has made no difference, her paediatrician thinks she may be intolerant to a few things but won't do any sort of test to see what it is. Any advice?

228agreenend Sun 13-Nov-16 20:59:39

My dh and DS have both had it done. They were both diagnosed with milk casein (ie. protein) intolerance.

Shurelyshomemistake Sun 13-Nov-16 21:03:47

Total and utter bollocks. Do not waste your money!

Have you also cut out soya from your DD's diet? It's commonly a co-allergen alongside milk.

smudgedlipstick Sun 13-Nov-16 21:08:55

We have cut out soya yes, made no difference. As I said she has been off dairy for over a year and whilst it has improved slightly, it's not the only cause of the problem, there must be something else she is intolerant too, or something else going on altogether!

Which test did they do? Was it holding something and something connected to there foot?

Shurelyshomemistake Sun 13-Nov-16 21:21:02

Honestly if it's vega testing or similar it is a total load of claptrap. There are ample studies showing it is no more accurate than guesswork. It will tell you nothing.

What do the gastro paeds suggest as a next course of action? What other signs of intolerance does she have?

KarmaNoMore Sun 13-Nov-16 21:30:19

It may be the York Test. So many false positives we would have needed to raise DS on mushrooms only (who he doesn't like)

Is she completely out off dairy or is she having some lactose free products? DS was intolerant to dairy, but there was something in lactose free products that was still causing problems. As soon as we removed dairy completely (as whennyou srart cjecking that ham or chips do not have milk). Big difference after that, off went the constipation, eczema, bloated tummy and constant coughing and runny nose BUT it was a proper hassle to ensure he was still getting all the calcium he needed not to affect his growth.

smudgedlipstick Sun 13-Nov-16 21:40:43

Thanks for your replies, she is completely off dairy, she has soy alternatives and coconut products.

She has severe tummy pains when she needs to go the toilet, she is doubled over. She doesn't suffer with constipation, her poo is never hard, it's like diarrhoea. She had had blood in her poo fairly regular. She is covered in eczema, she always had a runny nose and cough.

The docs are stumped. She has been on four sachets of movicol a day for a very long time, that has been reduced to two sachets and a new medicine to make her bowels move. To me, her bowler movements are not a problem, they are basing it on if she eats dairy then she doesn't pop for a long time, but is in a lot of pain but it still very loose when she eventually goes.

In all honesty, I know the frequency test is probably rubbish I have just run out of what I can do to help her, we take her to appointment after appointment and no one knows what to do, just change her medicine to make her go everyday instead of finding out what the root of the problem is

KarmaNoMore Sun 13-Nov-16 22:26:05

Food diary? Just write everything she has over 3 weeks and all reactions, which days are better or worse. It may narrow the number of possible allergens to a few ones an allergician may be able to test for.

KarmaNoMore Sun 13-Nov-16 22:30:38

By the way, has he been tested for soya allergy? DS has never been healthier than when we were avoiding soya (we removed it at the same time as milk) but I thought that was because everything has soya so we spend a few years cooking everything from proper scratch.

Shurelyshomemistake Sun 13-Nov-16 22:39:40

Has she been tested for coeliac disease?

smudgedlipstick Sun 13-Nov-16 22:46:06

We have done a food diary, and we have now been referred to a dietician(not that I have heard anything yet) so they may be able to see something that we can't, there doesn't seem to be any pattern to it that I can find, if she accidentally east dairy(nurseryangry) she has quite severe tummy pains for around a week after. The paediatrician suggested taking her off soy which we did and made no difference at all. She is back on soy now but is still off all dairy. She has had the allergy blood test which came back no allergies

smudgedlipstick Sun 13-Nov-16 22:47:32

Apparently celiac disease was included in the allergy blood test she had. Every time we see the paediatrician he tells me he thinks it is celiac disease but it can't be because the test came back with nothing hmm

Shurelyshomemistake Sun 13-Nov-16 23:09:34

I thought the only proper, definitive test for coeliac was biopsy. If he thinks it's that will he not do one of these?? Not pleasant but worth it if it puts an end to her misery. Coeliac UK's website suggests that you can have coeliac but it not show up on blood tests.

Katymac Sun 13-Nov-16 23:16:06

It can take weeks & weeks for my tummy to right itself after having soya, even if it's only a tiny bit

smudgedlipstick Mon 14-Nov-16 20:30:29

She was off soya for around three months and there was no difference.

I was told that the blood test should show something if she had an allergy which it obviously didn't and they won't do anymore tests now on the allergies sad we are at a bit of a dead end to what they will do, I have to wait 6 months now for another appointment and the new medicine she has been out on has made no difference so just looking for what I can do

Katymac Mon 14-Nov-16 20:33:32

Poor poppet what was she having then just coconut milk? Might she be allergic to that?

Rhubardandcustard Mon 14-Nov-16 20:57:13

Coeliac doesn't always present with a positive blood test, call coeliac uk org and ask their advice.

smudgedlipstick Mon 14-Nov-16 21:07:02

I will give them a call thank you.

When she was off just dairy she had soy products, and then when we had to take her off of soy as well then she was on coconut based products and had almond milk. Bless her, it seems to be never ending and we don't seem to be making any progress as to what the cause of the problem is. sad

Katymac Mon 14-Nov-16 21:29:14

My main intolerances are (sadly) Soya, coconut & almond - if I have any of those I have a milk intolerance too but if I steer clear of soya, coconut & almond I can have's a nightmare!

BertrandRussell Mon 14-Nov-16 21:33:02

It sounds very like coeliac. Has she had a separate test for that?

smudgedlipstick Mon 14-Nov-16 22:46:43

She hasn't had a separate test just the blood test, doc said it would include celiac but after reading all your replies I am gathering that it might not be a definitive sad

Shurelyshomemistake Tue 15-Nov-16 09:42:27

Definitely not definitive and in fact I know two children who had false negative blood tests but where later biopsy confirmed coeliac

BertrandRussell Tue 15-Nov-16 10:01:27

Have you tried excluding gluten from her diet?

Bear in mind that if it helps and you then want to get her tested she will then have to go back on gluten for a month (I think) before the test can happen.

But if I were you, I would try putting her back on dairy and anything else you are eliminating and cut out gluten completely. Go convenience food or anything that makes it easy- do it for a month and see what happens.

BertrandRussell Tue 15-Nov-16 10:03:41

You can't make it worse- and as she hasn't shown up with any allergies and you don't have any appointments for ages...........

smudgedlipstick Tue 15-Nov-16 18:26:27

So would you put her back on dairy and take her off gluten?

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