I think i've proved my point

[LeaveThatEggAloneNaughtyNigel]

DD off gluten for a couple of weeks. was happier - cheerful joining in etc etc. now in order to do yet anothe blood test have beenback on the bread since thursday and is weeping, clingy, tantruming, miserable feeling sick.
various people asking what i'm doing differently.
am proved right. ha.
just got to hold on till blood test on tuesday then am back on gluten free. don't care what the results say - i know now i'm right - this is a problem and we'll try GF and see what happens in the future.

[wangle99]

We saw a paediatrician who thought DS had coeliac, when test was negative he admitted gluten free diet was working and said just go back on it. Actually DS has wheat allergy but that is another story.

Hopefully your GP will be as understanding and recommend GF anyway. Sorry DD feeling bad again though.

[flamingtoaster]

Sorry DD is feeling so miserable. I can understand you want to get her off gluten again but for a full coeliac diagnosis it needs a biopsy if the blood test comes back positive so she should not go gf until the result comes through if you want the full diagnosi. She needs to be on gluten until the biopsy because her gut will probably heal before it if she comes off the gluten after the blood test (unless your doctor can arrange a very fast appointment). Some doctors will agree to "treat as coeliac" if presented with evidence such as yours that it makes such a difference. I would speak to your doctor before going glutenfree.

[cheesesarnie]

gp wont test ds for suspected cows milk intolerance just said if its working with him not having it continue not to give it.

[lackaDAISYcal]

I'm not too sure, but I thought you needed to be back on a gluten containing diet for a minimum of two weeks prior to any testing.

Also, the blood test is not 100% accurate as a screening test, so you may get a negative result but still be sensitive to gluten.

You say "back on the bread", but gluten is present in so many more things than just bread, so it might be wheat that is the problem rather than gluten.

As flamingtoaster says, the only way to test for gluten intolerance is a gut biopsy.

and regardless of the results, restrictive diets should only be undertaken with the support of a dietician, especially where young children are concerned.

[flamingtoaster]

lackadaisycal - you are right there is a minimum time to be on gluten for testing. If someone has been off it for months then the suggested time is now three months. Leavethateggalonenaughtynigel's daughter has only been off for a couple of weeks so her antibodies won't have disappeared completely though I agree it would be better not to test for a couple of weeks.

leavethateggalonenaughtynigel - Explain to your doctor that DD was off gluten for a couple of weeks and only went back on to it on Thursday - unless you wait for a couple of weeks her antibody levels will be low. Your doctor really needs to be told this - her results may be dismissed as the level is not sufficiently high to suggest coeliac disease.

[LeaveThatEggAloneNaughtyNigel]

cheers gals
yes i know about being back on gluten for the alloted time before any tests etc. (and i do know it's not just bread - we went totally GF for a while)
am waiting until the end of this week for her next blood test. will rethink whether to stay off the gluten until the results are back - i'm assuming they'll take a few weeks like the last lot did. it is very hard though because she is miserable again. and i don't know if the drs will believe me enough for me to suggest a biopsy (and i don't know if i'm strong enough for it either)as it is they think i'm insane - if i suggest they do anything invasive they'll think i'm worse. (by the way i'm a nursey so can understand and talk their language but doesn't make it any easier though).

[flamingtoaster]

I know what it's like leavethateggalonenaughtynigel - I knew ds had a problem and raised it several times with the doctor - I was made to feel like a neurotic mother so cut back his gluten to only two slices of bread a day which avoided the symptoms. Seven years later he had a spectacular allergic reaction to gluten - they finally did the coeliac blood test at my request and it was positive (though low because of low gluten intake). Our doctor did say later the diagnosis was only because of me persisting - so hang in there! The consultant when we finally saw him had two junior doctors with him - they went through the history. The consultant said I had understood the problem from the word go, turned to the junior doctors and said, "Always listen to the mother." Wish more doctors had that attitude! Good luck.

[lackaDAISYcal]

whatever the results of the blod test NN, the fact that she improved after giving up gluten should be enough for a referral to a paeds dietician I would think.

It amazes me that normal GPs are pretty clueless anout gluten intolerance and that they don't proscribe the (£10) blood test as a matter of course when people present with bowel problems.

I was only diagnosed by accident after suffering from awful bloating for nearly all my adult life and several nasty outbreaks of DH. when I had a sickness bug (aged 34) and the D bit didn't clear up I went to the docs after eight weeks. It took another few weeks for my referral to the BUPA hospital to come through (thankfully I had insurance through work or it would've been another eight months before I saw an NHS gastro-enterologist). anyway, they only did the coeliac test as an aside as I was booked in for a colonoscopy. when it came back positive they did the gut biopsy at the same time. I wonder just how ill I would've been if it hadn't been for that relatively simple test.

I do wonder about my own DS, as he is always really pale and has interesting poo most of the time and compalins of a poorly tummy a lot, but his blood test came back negative so they won't do any more about it.

good Luck with it all, and I hope you can get a definate diagnosis so that you can deal with it; for one thing GF stuff costs a fortune if you don't get it on prescription.

[flamingtoaster]

lackadaisycal - did they test at the same time to see if your son is IgA deficient because this causes false negatives?

[lackaDAISYcal]

I don't think so ft. what is IgA?

[LeaveThatEggAloneNaughtyNigel]

IgA is the total antibody reaction thing they measure to see if you are reacting to gluten. TTg is on specific gluten reaction thing - I think.
If the TTg is 'negative' i.e you're not making loads of antibodies in reaction to gluten you may be IgA deficient and therefore still gluten sensitive. If the IgA is measured and there are no antibodies at all - you're still possibly gluten sensitive and IgA deficient.
I assume that if you are IgA deficient and still with signs of gluten sensitivity they'd want to do a biopsy.
i think this is right - do correct me if i'm wrong.

[flamingtoaster]

You are right LeaveThatEggAloneNaughtyNigel. There's a full explanation here: americanceliac.org/diagnosis.htm which suggests that young children may be particularly likely to get false negatives for this reason.

[lackaDAISYcal]

Thanks for that info; I think i'll try again with them, or at least get a copy of the blood test results. If he is coeliac, then I'd rather know sooner than later. He tends to eat quite a bit of GF anyway as I really can't be bothered cooking extra pasta just for me, so we all tend to have GF. He does have lots of bread and wheat based cereals though.