Is it possible to test negtive in intolerance blood test and STILL be intoerant iyswim??

[simpson]

DD (15mths) is intolerant to dairy and soya and is on neocate (and has been since 10mths) she is under the care of a pead consultant at the hosp..

Anyway I have always thought there is a problem with something else and I have twigged it is probably oats...Gave her oat biscuit yesterday and we have had 4 poos today so far and she seems constipated

Well pead has just rung and said that the blood tests she had a month ago included intolerance test for oats which came back negative

Basically now the pead is being a complete tosser and saying he doesn't think there is a problem with dairy and wants her back on normal milk and says cows milk protein intolerance is grown out of by age one

What do I do??

Had the same problem with dd1, (DH dairy intolerant).

She had the allergy skin prick tests which came back negative to dairy, but she still had symptoms of intolerance when we reintroduced it. Fortunately we had a sympathetic GP who was happy to continue to prescribe nutrimigen until she did grow out of it ( she was past 2yrs but I can't remember exactly)

As an aside she is now being treated for constipation and we have an appointment booked in a cpouple of weeks with the GP so she may not have grown out of it as well as I had hoped!

Simpson my DD's paediatrician said that 80% of babies grow out of it by the time they're 4 - so slightly different to yours!

Just about to change the 5th pooey nappy of the day

Oops just noticed spelling mastakes in OP

Must have been too to check properly

my DD (2.1yrs) is allergic to cows milk protein and has been on a dairy free diet for the last 18 months. She has had 2 blood tests in that time, both showing an allergy although the more recent one - 2 months ago - showed the allergy was less severe.

I always get confused over allergies and intolerances (so I might not be of any help to you) but we were told that most children who develop an allergy to cows milk before the age of one usually outgrow it by school age.

Also, we saw a consultant who specialises in allergies and he said that in his opinion it is possible to show a positive blood test to something and not show any physical reaction to it and likewise show very obvious symptons but test negatively. He would always expect to see at least 2 similar reactions to the same food type before considering diagnosing an allergy

I'm sorry if I'm barking up the wrong tree talking about allergies but I'm hoping the logic behind what we have been told would still apply.

Stick to your guns and if you don't feel now is a good time to give up the formula then say so. All the best

What should you do....

....tell the consultant to sod off in the politest way possible.

You don't specify in your message if her consultant is an allergy specialist or not. Remeber that in most regional/district hosps many of the pead consultants do general peads clinics with additional ones in their speciality e.g. my SIL does general peads plus oncology so she might see your child in general clinic for something like a suspected food intolerance but it is not per se something she has in-depth knowledge about.

When dd1 got sick with what was evt. diagnosed as cow's milk protein intolerance I crossed checked what dd's consultant was telling me with my sil, but as it was an area she knew little about she got upto date info off her gastro / allergy colleagues for me.

I was told 80% outgrow it by 2 and 90% by 5 yrs.

My dd's RAST blood tests all came back negative but if she took any dairy (even via my bf-ing) her gut would bleed but in theory the tests all said there was nothing wrong with her. Fwiw, I was told that allergy testing in under 2's is very unreliable. For us the confirmation was exclusion diet followed by periodic diet challenge. She evt. outgrew it at 2.5 yrs and until then had formula prescribed.

Good luck and stand your ground, you know your child best.

Oh and my DD's RAST blood tests also came back as negative, despite the fact that she has a clear reaction and has thrived since being prescribed Nutramigen.

Poo number 6 now Grrr...

Sunshinemummy - what is a RAST test?

Swissmiss - I agree, I want to say exactly that but get so when he is threatening to take her off the neocate...

Consultant is not an allergy specialist and would refer her to allergy clinic but TBH don't think she is allergic iyswim.

He also said he doesn't think she is cows milk protein intolerant and it was only after we had finished the conversation (I was distracted by the neocate threat)that I realised what he said and thought "no she isn't, I never said she was, she is intolerant to the sugar in dairy (lactose)"

ellymae - she has definately reacted to oats and has tested negative.

He is also talking about going back and testing her for dairy/soya (was done in stool sample before) but surely she will have to be eating it to react against it iyswim

I am not prepared to put her back on dairy/soya just for test (which I have been asking for since she was 8mths BTW )

Sorry for rant guys, he is such a tosser!!

no need to apologise.

regardless of wether she is lactose or cows milk protein intolerant (not allergic in the sense of anaphylaxis) if giving her dairy products causes any kind of problems then why should he threaten to take her off neocate??? i don't get it and am for you and dd.

just a thought - could you get your gp to do you a neocate prescription on repeat?

off an early letter, after clinic, copied to gp, dd's consultant stated what formula to use and from then on our gp just put it on a repeat prescription so i didn't have to bother with the hospital drs or even getting a gp appt. it was pretty much left up to me how long i went on re-ordering it for.

Yes I have it on repeat prescription and just go into local chemist a few days before I need it. get 4 tins at a time.

But pead is saying from June/july time he will write to GP and advice she comes off it.

He will want to see me & DD for an appt first though (am sure that appt will be a bundle of laughs )

Are you sure dairy is the problem? Just when you said about the oat thing it made me think that she could have coeliac disease (a gluten intolerance). I remember studying it in my nutrition degree. It can be quite serious if not detected as it prevents vitamins from being absorbed (however once detected low gluten diet sorts out the problem). Maybe you should suggest test to your paed (or find a new one who will do the test).

AliGrylls - funnily enough that was one of the results the pead was ringing me for was coeliac disease which has come back negative...

Her stool sample done when she was 8mths old showed sugar in, thtas how the dairy intolerance was detected (ehich he now denying

She was then put on soya formula and over a 3wk period got very constipated on that too

She has been on neocate ever since but pead didn't prescribe it originally. I managed to get a free sample of it and because she improved so much he gave in and prescribed it...

Is it worth going back to my GP and telling her and asking for different pead?

babybarrister - thanks that is what I think too.

Maybe DD's pead needs a lesson from them

I also thought they were supposed to listen to the parents and not dismiss what they say too. Grrr..

Ds has been allergic to eggs since forever, he is now 7yrs.

Last year his RAST (blood) test was within normal limits. When tested with a skin prick test though, he had a reaction showing he was still allergic.

This year, skin prick test ok and is now eating foods with egg in.

Consultant made sure he had proper egg challenge in hospital as he said they can still react even when tests all negative.

Not sure if that is any help but would also suggest trying to get a referral to someone who specialises in allergy. Although, paediatricians generally do not like 'treading on each other's toes'. So not sure how you go about it.

Do you have a sympathetic GP?

desperateHousewifetoo - yes GP is brilliant

But she won't want to tread on his toes I don't think...

You could request a second opinion before changing formula.

Certainly, when I worked in NHS, parents were able to request one in our department (slt).

It's worth a try.

Or tears?!

Ok have a few options:

a)go to GP (who is good) and explain situation without slagging pead off too much and see what she suggests.

b)next appt in june...say DD sick and put off for as long as I can while still ordering neocate

c) see pead stick to my guns but he does get patronising and try to confuse me with medical words etc

d) ask to see another pead..

e)Desperatehousewifetoo's suggestion

Delay tactic: ask to be referred to a Dietician

Sob, sob. Sniff, sniff.

Come on. Practise

ilovemydog - we see dietician anyway every 8wks...maybe i should ring her that could be option...oh I forget F)?

TBH she is lovely and knows her stuff re food but does leave things like neocate prescriptions etc to him...

desperatehousewifetto - have LOLed and spat drink on key board!!

I've been told that DS will be on Neocate at least until he's 2 years old. Could you suggest that since your DD is thriving, you would be happier for her to stay on it until she's 2?

Oh, and she have 'failed' the blood test, but 'passed' the elimination test, which is just as valid.

Also, not sure what it has to do with the Paediatrician as prescriptions are out of the GP budget, I think

DS consultant tends to consult with the dietician, and he couldn't even come off the drip in hospital until he had seen the dietician. And then couldn't come off the gs tube.

Guess it's different where you are?

Hi again Simpson. If she has been tested for everything you may have to accept that as far as the medical establishment is concerned the problem may not be one that is dietary. The medical establishment is concerned with allergies that can be proven rather than intolerances (which may have a physiological basis but do not show up in tests) and most of the medical establishment is unsympathetic. Maybe if she has been tested for all the usual dietary related stuff, the problem is not one that is strictly related to diet, albeit a dietary adaptation will improve symptoms. On a more positive note, it sounds like you have a really good dietitian who is keen to help. I am sorry if this sounds a bit negative but I can recall the attitudes of some of my lecturers really quite vividly.

AliGrylls - she tested positive in her stool sample which showed she was not tolerating the sugars in dairy.

But pead seems to forget this

Yes dietician is good

Have left a message for her to call back, but she is off today so won't be till tomorrow.

Ilovemydog - you have reminded me thats what dietician wants for DD to (to stay on neocate till she is 2)

Will have a chat with her and see what she says...

I only saw her 6wks ago and she said to not even think about trying DD on dairy/soya yet.

DS Dietician sends the Neocate prescription directly to his GP, so maybe you could bypass grumpy consultant?