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Gluten and Lactose intolerence

(16 Posts)
IndigoBell Wed 19-Oct-11 11:32:04

I have cut out Gluten and Lactose from DS and DDs diet and noticed a huge improvement in them.

So I'm planning to keep them off it smile - but I was wondering if it was easy to get them properly tested for allergies, and what else they might be intolerant of?

I especially want to know if they're ok with Soya, lactose free milk, GF Pasta, potatoes and rice.

mollymole Wed 19-Oct-11 12:27:54

If they are children you should not really cut any particular group of foods out of their diet without medical advice. If you have concerns speak with your doctor and ask them to arrange blood tests.
When my son was younger he started being lethargic, sickly, no energy etc, initially put it down to his age - 14 and we had an 'allergy test' at our local health shop - they did some electronic testing and said he had a number of 'allergies' major one being lactose.
He got more and more ill and we saw the Doctor who arranged blood tests etc. turned out he had Glandular Fever and NONE of the allergies that had been suggested.

garliclover Wed 19-Oct-11 14:49:23

When you say you've noticed a huge improvement, what sort of symptoms have improved? How old are your DCs?

There is an important difference between allergies and intolerances. Might be worth talking to your GP about this, and I agree with mollymole about not cutting anything out until you have a better idea about what is causing the symptoms.

IndigoBell Wed 19-Oct-11 15:17:41

This is an intolerance, not an allergy.

My GP has never been helpful in the past. Every time I say the kids have constipation all she wants to do is prescribe movical.

My DC are 10 and 8.

Cutting out Gluten and lactose has resulted in:

* DS - not feeling sick all the time
* DD - not having a sore tummy all the time
* Both - Not being constipated
* DS - calmer and happier
* DD - brighter and more alert and improved memory

I know they're intolerant of lactose and gluten. What I want to know is can they tolerate gf substitue stuff and soya. So what I want to know is how do I get tested for that. Do I see my GP? And if so, what do I ask for?

rodeoshoes Wed 19-Oct-11 23:13:56

I have coeliac disease and had all the symptoms you described. It also made me lactose intolerant too. Have your two been tested for it?

IndigoBell Thu 20-Oct-11 10:26:05

Thanks Rodeo,

How do you get tested for coeliac? Is it a blood test? And do they test for other things as well?

Is there anything else you've cut out of your diet as well as gluten and lactose?

DD had GF chicken nuggets (and chips) last night, and got terribly bloated sad

So I know she is intolerant of other stuff as well........

jicky Thu 20-Oct-11 10:48:23

Ds1 is coeliac and lactose intolerant. He had lots of the symptoms you describe.

You need to be eating gluten to be diagnosed - by a blood test initially and then at Great Ormond Street with a camera to check out state of intestines and a biopsy.

He probably had been showing mild symptoms for some time, but then got such terrible diarrhoea he had to have 2 weeks off school. He eventually went back when tests showed he wasn't infectious, but then took about 6 months to get the final diagnosis - partly due to time taken to see the consultant - once we saw him he got it sorted pretty quickly.

Could be the chips as gluten source - the coating can have flour in, or the oil (if you had used it to cook something else) or even the utensils - we now try to keep gluten free utensils for ds1. A pin prick amount of gluten could set off the symptoms. I had to wash out all my drawers for example.

freefrommum Thu 20-Oct-11 11:36:05

I agree with jicky, it does sound as though you need to have yous DCs tested for coeliac disease. My DD1 was diagnosed earlier this year and I have to say it was very hard making her eat gluten for 6 weeks before the biopsy but it was worth it to finally know for definite. Her blood tests were 95% conclusive but in the UK the biopsy is considered the 'gold standard' and the only way (I believe) to be entitled to GF food on prescription. Many coeliacs have to give up dairy too for a while but normally once they've been GF for a long enough for the bowel to fully heal they can reintroduce diary without any problems. I can't see any reason why soya would be a problem too and in fact I think soya intolerance is pretty rare (as opposed to soya allergy which is quite common, especially in children).

IndigoBell Thu 20-Oct-11 11:39:20

OK, I don't really know anything about coeliac.

But if the treatment for coeliacs is to give up Gluten, and we've already given up Gluten - is there any point in getting a dx?

What would a dx bring? ( I don't need GF stuff on prescription.)

pinkytheshrunkenhead Thu 20-Oct-11 11:50:00

Two of my children have coeliacs and I would say you would be crazy to put them on the diet forthe rest of their lives without a diagnosis. You do not have to have coeliacs if you have an issue with gluten -coeliacs is an auto immune disorder caused by an intolerance to gluten.

My children were diagnosed without having the biopsy,just the blood resultsand have full entitlement to GF stuff on prescription.

But living GF long term is very hard for kids so please don't do it to them unless you know for sure.

IndigoBell Thu 20-Oct-11 11:57:48

Right, but they have an issue with gluten, and I've removed it.

I don't think they have coeliacs, and I'm not intending to keep them GF for life.

Once they're constipation etc is gone and they're guts had a chance to heal (for 6 months or so), I'll reintroduce gluten and see if they can tolerate it.

I don't see what a blood test will tell me? I know I have to keep them off gluten now, and in the future I'll be able to tell if they can tolerate it or not by giving them some.

There is no way I am giving them gluten to get a dx......

How will a dx help?

silverfrog Thu 20-Oct-11 11:58:29

Indigo - you can be tested for coeliacs (blood test initially, other tests too).

But, ime, this is as far as a GP will go normally for intolerances (as opposed to allergies). dd1 tested negative for coeliacs, but has definite gluten issues.

dd2 also negative for coeliacs (although it was a waste of time testing her as she was gf anyway confused - her paed was a real waste of space thoguh!), as far as we know, but does not do well with a lot of gluten in her diet.

as you know, there is the possibility of Sunderland testing (whatever they are called now). you can also see a nutritionist (eg Natasha Campbell MacBride sees people) and see what tests they recommend.

ime, you will get a lot of people cautioning against changing diets, and 'meddling about' - without seeing the results you are seeing, it can be hard to believe the changes that are possible (ie an entirely different scale to 'I just feel so much better')

silverfrog Thu 20-Oct-11 12:01:10

oh sorry, meant to say:

if you see a nutritionist and they test for intolerances, they will be looking for raised markers which indicate issues.

when we last had dd1 trsted (just a broad spectrum test) her levels indicated she was struggling with a number of things. we didn't immediately cut it all out, but instead went for digestive support to help her gut heal enough to cope with these foods.

rodeoshoes Thu 20-Oct-11 12:45:41

The trouble is you would need to know for sure if it is coeliac disease as you need monitoring. Unfortunately it also means being GF for life.

It's a huge pain in the arse & not something you want to maintain without having to. I loath it personally. Thing is, as an autoimmune disorder gluten exposure, no matter how small, predisposes you to infertility, osteoporosis & cancer so you need to be in top of it.

I had loads of problems with food in the beginning. Partly because I didn't realise how much stuff had gluten in & couldnt identify it in the labels. I also didn't understand the contamination aspect.

Lastly, until my intestines healed a bit I couldn't eat soya, processed food & all the gluten free stuff bloated me or i felt sick. I could only cook from scratch. It has got better though & those problems have gone. I can even tolerate lactose now. grin

All my blood tests were negative, it was picked up by chance through an endoscopy. So a blood test won't rule it out. If it is coeliac they may need to take multivits too, although they can do levels of B12 etc if they are deficient.

That said i really hope it isn't & they feel better soon!

mintychocchip Thu 20-Oct-11 15:04:13

Hi IndigoBell, I am in a similar situation with my DS2 who is 6. He reacts really badly to gluten so for the past 4 years I have removed it from his diet and seen him really happy and thriving with no tummy ache (unless he accidentally eats something containing gluten).

However we used to be able to access a dietitian and paediatrician where we lived previously - they supported us with regular health checks as they considered him 'possibly coeliac'. We did get prescription foods but this was a minor thing really, the support was invaluable. However we have moved to a different health authority and we cannot access such support without diagnosis. So we have to re-introduce gluten for 4-10 weeks and do a biopsy.

How awful to re-introduce something that you know will cause tummy ache, bloating, irritability etc. in a 6 year old. I am really upset that we have to do this but I completely understand their point of view (the medics that is). There are worrying long term health implications from being coeliac and it is essential to know so you can watch out for these and act quickly.

Apparently the paed we saw last week said that gluten intolerance was very unlikely and we should not follow a gluten free diet long term without good medical reason as it is hard to meet all nutritional needs so you need good justification.

auntevil Thu 20-Oct-11 18:28:37

Indigo - DS3 was dx as lactose intolerance by a gastroenterologist. Firstly it was a poo sample (he was only 3) and then during an endoscopy. This was to hopefully give an idea to diarrhoea causes. DS2 had his lactose intolerance dx by same gastro by blood and colonoscopy samples. Neither tested for coeliacs.
DS3 didn't clear up much, DS2 improved - as in went less times, but still not as you would hope.
We tried reducing the amount of gluten that DS2 ate - and it had great results, far more noticeable than just the lactose. I told DS3's dietician this and we did a food/stool diary. She confirmed that gluten definitely is a likely contributor to the problems. He has since done a gluten and lactose challenge - he was like a different child. The dietician has said that she will arrange for a prescription for gluten free products to be raised at our next appointment in a couple of weeks. School has asked that I try to put him back on it now - they enjoyed the 3 weeks of no soiling!
So I suppose i'm saying, take the evidence to them. A 3 week challenge, monitoring those aspects causing concern - tiredness, pain etc, 1 with gluten and lactose and 1 without. If nothing else, it will make you more/less convinced that this is the way to go forward.
Can I also point out that in our pct, you cannot see a dietician unless you are classed as 'failure to thrive'. This means that DS3 can see a dietician, DS2 can't, and DS1 who has dx by the same gastroenterologist of fructose, sucrose and CMP intolerance also cannot see the dietician because they are too healthy!

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