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Coeliac disease test - inconclusive results!

(13 Posts)
NothingsLeft Sat 14-Sep-13 09:39:12

I'm a coeliac and DS was tested at a year after weight gain issues. I would go back to the GP and ask again. DS's results were were inconclusive, so he's just being monitored for now.

He also has a cows milk protein and soy allergy. I have eorked really hard to cut out any trace of both from our diets (I'm BFing) he's gained lots of weight in the last six months.

Pelvicflooragogo Thu 12-Sep-13 17:21:32

It's nonsense that they wouldn't test, the GP arranged a blood test for my two year old before we even saw paeds and my daughter is now very well with a coeliac diagnosis. Good luck with finding out more.

TurquoiseTranquility Sun 04-Aug-13 22:04:30

phoenix, yes I know there are lots of gluten-free products out there, but if his NOT coeliac, I'd be doing more harm than good by drastically changing his diet. Besides, as others have said, cutting out gluten now would compromise testing, and if he's coeliac I want him officially diagnosed.

TurquoiseTranquility Sun 04-Aug-13 21:59:57

no we are getting him tested properly, it's just, if I knew the diy test was positive it would be so much easier to push for a lab one. We got referred to the paeds twice before, got the same lady both times and she was very dismissive. Unfortunately there could be a multitude of reasons for DS's symptoms, coeliac being just one of them, so ideally we want him tested for a whole lot of things, but sadly in this age of austerity there's only so many "favours" one can ask for. So narrowing down our list would be helpful.

Napa, no, weight problems isn't the only issue, he's always had very loose stools, also had terrible rash when I started to wean him which I later discovered must have been due to his inability to digest fibre. He luckily grew out of that but it seems that not completely so. He was also lactose intolerant as a baby and that can be associated with CD. DD is also lactose intolerant but her colic seems to be getting worse rather than better despite her being on lactase enzyme supplement. So I'm wondering, could this be her reacting to traces of gluten in my milk? I tried eliminating almost all dairy first, it seemed to make a difference but the last couple of weeks she's been getting worse again, and lots of mucus in her stools which does suggest some sort of an allergy or digestive problem.

notapizzaeater Sun 04-Aug-13 21:30:11

In kids the blood test isn't always accurate but they are changing how they do it. IIRC if here is a strong family history of it, then justs positive blood test should do. No family history or negative blood test but still showing all the signs then camera.

My ds had horrific diahorrea, I could never remember him having a solid poo. One of my friends sons just got diagonosed after being constantly tired and joints aching.

NapaCab Sun 04-Aug-13 21:03:29

Interesting notapizzaeater that they still do the endoscopy for kids rather than the blood test. I was diagnosed as a teenager and had the endoscopy but that was before the blood test was developed. I had assumed everyone gets the blood test now. Good to know when watching out for my own DS as he gets older!

NapaCab Sun 04-Aug-13 21:01:55

Why don't you just get him tested properly? I know your GP said they're reluctant to test at this age but if you push them, they should do it. It's only a simple blood test. Self-diagnosis is dangerous as it might only complicate matters for a real diagnosis down the line. Better to keep his diet as it is, wait until you get the pediatrician appointment and then try to push for a proper blood test and proceed from there.

Coeliace disease is not just about weight loss / failure to thrive either. The biggest clue is bowel issues e.g. if your DS has regular bouts of diarrhoea or foul-smelling stools that look fatty and pale. Also problems with constipation are a clue and a bloated belly.

notapizzaeater Sun 04-Aug-13 20:52:19

Don't take gluten out of his diet if you're going yo have I'm tested, going going back on to it after not having any would be worse. You need to be eating significant amounts of gluten for st least 6 months before. In kids the blood test can be inconclusive, the gold test is a look at the bowel.
My coeliac 10 year old has doubled in size since going gf - 4 years ago

BearPear Sun 04-Aug-13 20:37:44

If you cut out gluten yourself your GP won't be able to test at a later date - the test needs to be done properly on a "normal" diet - you can't test for something you have already removed!

A simple blood test should flag the antibodies, an endoscopy will usually give you a definitive response. My DD was tested positive at 3, she's 19 now and definitely thriving!

PhoenixUprising Sun 04-Aug-13 20:29:13

It's actually amazingly easy to cut out. The free from aisle in your supermarket will have bread, pasta, flour and biscuits.

While it can take 6 months, normally it's much quicker.

It took days for me and 2 of my 3 children. After just a few days off gluten I feel sick or get an upset tummy if I have some.

TurquoiseTranquility Sun 04-Aug-13 19:09:08

well it can take up to 6 months to see any improvement! I wouldn't want to cut out such a staple as wheat unnecessarily, for THIS long!
We've now been referred to the paediatrician because of his poor weight gain, but GP sort of half-said that they can be reluctant to test for coeliac at his age.

PhoenixUprising Sun 04-Aug-13 18:43:31

Simplistic thing is to just cut out gluten and see if it helps.

You can be sensitive to gluten without having coeliac.

TurquoiseTranquility Sun 04-Aug-13 18:41:26

Hi there,

I've just done a DIY coeliac disease test on my 4-yar old who's had weight gain problems ever since I weaned him. It was a Biocard test from Boots. The result is anything but clear - instead of showing one line (negative) or two lines (positive) it came up with a DOT and a LINE!!! The dot appears before the control line, i.e. where the "positive" line is meant to be. It's not just a smudge but a nice fat little circle, approx. 1 mm diameter. What the heck can this mean? Is it a positive, or has the test not worked?

I've uploaded a photo to my profile (although with MN default rescaling it's hard to see sad)

I'm going to email the manufacturer, but it being Sunday I doubt I'll get a response any time soon so I though I'd ask you folks.

Many thanks!

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