Coeliac blood test -ve what next?

[SisterBee]

DDs blood results FINALY through. For those chemically minded her Igt is 0.1 (normal range 0-4) I assume this means she has virtually no gluten type antibodies.
So what next?
her symptoms have stayed the same.
Horribly skinny
pale (although not amaemic)
Constant tummy aches and nausea.
Behaviour/temper problems
Her diet is rubbish. she eats no fruit or vegetables and exists on bread, crackers and chicken.
So what next? I suppose i was sort of hoping it would be positive, we'd go gluten free and she'd be better within a fortnight. on the plus side I don't really want her to have a lifetime of specialist diet or symptoms.
Spoke to GP. She said to ask paediatrician for another appointment.
Would you think seeing someone privately would hurry things up a bit. Can't bear waiting 4 weeks in between every appointment/blood test result/referral. Are there such things as private paediatritian/gastro bods? How much would it cost?
Another option would be to just go gluten free for a trial. Then there's the what ifs attached to that. What if she is better GF? would we then have to convince the Drs to 'treat as'?
Or - do i really want to convince a gastro bod to do an endoscopy on her? don't know if i could handle her having a GA let alone her deal with it.
Or just try to carry on as we are (not really an option as she's miserable and in pain)
If you've gotr to the end of that ramble - well done! but i'm very confused now and any advice as to what next would be much appreciated.

[Shannaratiger]

Haev you seen a nutritionist. The symptons maybe caused by deficiences rather than alergies. Have u tried giving her a multivitamin's & minerals?

[SisterBee]

Have a cupboard full of loads of types of vitamins - can't get them down her. can't even get her to take calpol. she won't. and i mean really really won't.

[Shannaratiger]

I suppose it wouldn't hurt giving her gluten free bread or crackers. They are really expensive though and she might not like them as they taste really different.

[SisterBee]

Don't care about expense - if it made her feel better of course.
anyone else?

[cluckyagain]

Go see a nutrititional therapist - mine has told me that we tend to only eat/crave the things which are making us worse - gluten/wheat sound like a pretty strong contender for your daughter. Hard work for a child but vastly worth it.

[wangle99]

I know not everyone believes in it but we used testing at the health food shop, DS was very similar to your DD - turns out it is an intolerance to wheat. Different child.

Obviously people have their own opinion of this type of testing, it has changed DS life and also DH (intolerance to milk which we had sort of sussed) health food test confirmed it.

[cherryredretrochick]

Hi,
My dd has been going through fairly simular, she was tested for diabetes and anemia among other things, she was also tested for coeliacs although we haven't had the results back yet.
I have a fantastic doctor, as soon as all the other results were back, so he had ruled out other possiblbly dangerous causes he advised us to go gluten free.
We did this last Tuesday, I does cost a bloody bomb but I don;'t care in the slightest. Since then my dd has eaten everything in site, we actually can't fill her up, she has put on 3.5lbs, her skin has returned to the pink rather than grey, her tantrums stopped immediatly and she is happy, I thought she seemed depressed before which is really scary in a 4yo. Her poo is normal, she is staying waake all day, she has taken an interest in her letters and numbers and is just the most pleasant child to be around.
I am not saying that your dd is exactly the same as mine but this was an experiment and we will never be going back no matter what the blood tests say.
There are some very knowledgable people on here who have been helping me no end over the last week and you would certainly know very quickly if she is like my dd.
My dd will not be having a biopsy, I think the doctor will class her as Treat as Coeliacs as we went gluten free on his advice, however I don't care if they don't this is the best thing I have ever done for my daughter and I am so grateful for all the advice and information I have recieved on here.
Good Luck whatever you decide to do.

[SisterBee]

Cheers
just seems a little too daunting.
will ring the paeds tomorrow and ask for another appointment.
In the mean time we may well just go cold turkey on her and ban the gluten. if there's a difference then good. if not we start again looking for other answers.

[cherryredretrochick]

Only problem with that is, and I am not trying to give you more to stress over but if you try her and it works she will not be able to have further tests.
Personally I don't care about that because what is the point of making a child ill to do tests to prove what you already know.
There are loads of gf alternatives so diet doesn't have to be too restrictive.
If you do do that i would advise to keep posting on here, you will recieve loads of advise with the basics.
Also i want to know how you get on
It is so worrying isn't it.

[SisterBee]

Exactly though. it will take another 6 weeks for paed appointment. followed by say another 6 weeks for dietitian/nutrition add on a couple of weeks in between for any results if they do any further tests.
I mean I suggested back in November it could be diet related and its February all ready!
And the thought of endoscopy makes my blood run cold (although i can see benefits too).
is it really worth another 6 months before trying? but yes if we did go GF then they suggested going back on it before further tests what if it made her il again.
AAAARRRRRRRRRRRGGGGGGGGGGGGGG am so confused!

[pigsinmud]

Hi SisterBee. She sounds like my ds2. 3 years ago (he was 4) he went wheat free on gp's suggestion - wish now I'd known more about CD and I'd have asked for him to be tested. He had a rubbish diet - existed on wheat, milk and a few bits of fruit. Like your dd couldn't (still can't) get any calpol down him! The difference in a month was amazing. Poos went normal, bloated tummy reduced and had loads more energy.

Now we have decided to push for coeliac test - we just want to know. Also, looking to the future and thinking when he's a teenager it might be diffcult to keep him off wheat unless we have a specific diagnosis. He is now 7 (yr3) and back on wheat since New Year - still waiting for a date at the hospital. He's had a couple of bad headaches, awful poos again, bloated, mouth ulcers. His energy levels are ok at the meoment - think it might be more of a long term effect of the wheat. He has been begging for wheat free bread - lunches are hardly eaten and has totslly gone off all food. Moods are all over the place.

I'm questioning our decision to have him tested! I'm convinced it will come back negative, but if it does he'll go wheat free because it's obvious to us that it's the wheat, so in a way it seems a pointless exercise.

How old is your dd? Going on what we're doing I'd tentatively suggest holding on until next appointment - decide if you can cope with having the biopsy and if not then try gluten free. I think for us if the result is negative, I wouldn't push for biopsy, but if it was suggested I'd do it. It's very difficult going back to wheat diet once off of it.

[geminilady75]

My DS is 5 and was diagnosed with Coeliac Disease last July.
The first three symptoms you mentioned would have me screaming Coeliac at you.
I think it might be worth going back to G.P to ask for a 2nd opinion.
From DS initial appointment to getting the diagnosis was 3 months which given nothing changed in that time, wasn't too bad.
I would give it another thought.
As for a GA I was also very scared and apprehensive but once it was all over and done with I realised I had stressed myself out unnecessarily.
Good Luck

[flamingtoaster]

SisterBee - There are false negatives - if your daughter is IGA deficient then her coeliac blood test could be a false negative as she would not have antibodies to gluten even if she was coeliac. It would be worth checking if they did establish whether or not she was IGA deficient. If you look here:

coeliac.info/suppboard/viewtopic.php?t=2314

You will find a bit about IGA deficiency. I do have a better explanation somewhere but can't find it at the moment.

[Sciolist]

My advice is that you should try a GF diet. To be successful, you have to cut out all sources of gluten (e.g. chicken nuggets), not just bread and crackers, and persist with it for as long as possible. If gluten is the problem, your DS will start to feel better fairly quickly and may then eat other things.

I am a coeliac and DS was tested as far as having a biopsy; he turned out to have giardia.