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Last year, I put my son on a gluten free diet

(13 Posts)
Trollsworth Tue 08-Jul-14 23:27:15

He has gained four inches on the waist since then - he's still a healthy weight.

I thought he had a gluten intolerance because he was constipated, felt sick a lot, head aches a lot, which have cleared this year, but now I'm wondering if it was actually ceoliacs.

Does anyone know anything about this?

MissSmiley Tue 08-Jul-14 23:36:37

I have two kids who are wheat and gluten intolerant. Both presented with constipation. Both have HLA markers for coeliac disease. I have biopsy diagnosed coeliac disease. They are at risk of developing it but biopsies on them have been normal. One of the children was asked by consultant to go GF as he had also not grown for a year. Very small amount in height but no weight gain in 12m. In the few weeks he's been GF he has gained a few lbs already.

You could ask for genetic test. If negative can't be coeliac. If positive, it's possible.

LadySybilLikesCake Tue 08-Jul-14 23:38:59

Gluten free bread/pasta does cause weight gain.

They can do a blood test as a first check for coeliac, however, he needs to be eating a normal diet (with wheat) for 6 weeks before the test.

MissSmiley Wed 09-Jul-14 00:07:28

Gluten free bread/pasta does cause weight gain.

No but being gluten intolerant / coeliac can cause failure to thrive.

notapizzaeater Wed 09-Jul-14 00:12:06

My son hadn't grown for 2 years (but was still above average height some kept getting dismissed). Eventually diagnosed coeliac, in the first year he grew 2shoes sizes and 5" height.

changeeverything Wed 09-Jul-14 00:13:14

Dd I very s.trongly positive on blood test for gluten antibodies, hasnt had biopsy as yet. Main symptom is extreme constipation.

nomdemere Wed 09-Jul-14 15:01:05

I have 2 coeliac DC. My first was pretty unwell at diagnosis. He shot up in the year after diagnosis.

If I were you, I would ask the doctor for an HLA gene-typing blood test. This will show whether your DS has one of the "coeliac genes" (DQ2 or DQ8). If he doesn't - it's very unlikely he's coeliac. If he does, then it doesn't mean he IS coeliac, (about 33% of the population carry one of these genes) but it does make it more likely.

The only way to find out for sure is to do a gluten challenge - eat a considerable amount of gluten every day for 6 weeks, then have a blood test. This could be extremely unpleasant for your DS.

However, if he IS coeliac, then you need to be absolutely scrupulous about the gluten-free diet - including about any potential for cross-contamination. It's very unlikely that anyone without a diagnosis will go to the required lengths IMO. So there is a strong argument for doing so.

If I were you, I'd do the HLA test first. If he has the gene, then I would plan for a gluten-challenge. I would try and organise the blood test for a date ahead (say 2 months ahead) so that you know when it will be and don't have to prolong the unpleasant gluten-eating period. I would also ask for an option to have a test earlier if he's very unwell (although it might have to be repeated if it comes back negative). You would also need to talk to school etc. so that they can be aware that he may be ill during this time, and plan for any help he needs.

Lagoonablue Wed 09-Jul-14 18:38:54

You would do better getting a proper diagnosis before putting him on a GF diet. Take him back for a blood test. If he doesn't have a gluten issue then no point putting him on a GF diet.

Trollsworth Thu 10-Jul-14 17:59:11

Right. I've made a doctors appointment for when we come back from our holiday, and as of Saturday, he's going back on the gluten.

I'm actually dreading it. I've had a different child this year, he's been sleeping instead of pacing to and from the toilet, he's not been headachy, he's been great. But this does need to be resolved, so I shall gluten m up then blood test him.

notapizzaeater Thu 10-Jul-14 18:12:02

I wouldn't put him back on gluten till you've been to the doctors. It might take weeks for an appointment, pointless making him suffer if he doesn't need to.

I don't know much about it but if you google i think in kids they can just look for a gene so you might not have to put him back on it at all.

MsRainbow Thu 10-Jul-14 20:07:09

Just remember he will need to be eating gluten daily for 6 weeks. I have 2 coeliac DC and when DH got tested our GP gave him a blood test form to use once he'd done the 6 week 'gluten challenge' ( he was almost GF when he requested testing). I see no reason why if you make an appointment now you can't arrange for a blood test once your DS has managed 6 weeks. Don't forget you can't stop taking gluten once the 6 weeks is up. You have to keep going till you get a diagnosis. In my DCs cases they had to then be referred to a peadiatric Gastro team who then repeated bloods and also did gene testing. DS2 was then diagnosed on bloods alone but DS1 also had to have an endoscopy to confirm coeliac disease.

Trollsworth Thu 10-Jul-14 21:22:31

Thanks msrainbow, I shall follow this all the way through.

nomdemere Thu 10-Jul-14 22:53:56

Yes, don't start him on gluten until you've seen the doctor and know when you can get the blood test done - you don't want to him to have it even one day longer than necessary.

Well done OP. It will be a bloody horrible experience, but you are doing the best thing for your DS. I will have to do this for DS2 (he is currently gluten-free because we are certain he is coeliac but the test was negative - we are waiting until he's 7 and will do it again then). Not looking forward to it at all.

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