Starting a lactose and gluten free diet - help please!

[Ruthyn]

DS1 (3.5) has had diarrhoea for best part of a year now, so we are going to try lactose and gluten free for a while.

I have been giving him lactose free milk which he prefers to soya milk, is this ok? Also, I hear lots of other grains such as maize, rye, oats can cause diarrhoea too, so am not sure how much to cut out. If we cut out all of them, there doesn't seem to be much left to feed an already fussy child!

He has been tested for coeliacs and it came back negative. Doctors are being no help what so ever....

why isn't he keen? If you think the tests may be repeated then hold off but otherwise a couple of weeks is manageable and would tell you a lot. Or try the enzymes.

After lots of consideration, ds is now on gluten free and has been for about 18 days now. Slighlty less tummy ache but still diarhea. I was hoping to see more of an improvment by this time, so am now thinking it might not be linked to gluten. We are still do ing lacotse free rather than milk free so that might be complicating things.

WE have another month to wait before the appoinment at the hospital, so doing this on our own really. They seem very reluctant to refer us to a diatician still.

How long should it take to gluten free then? An what do you give them for breakfast. DS donest seem to like any of the gluten free cereals or porride. Toast is the only thing he will eat in the morning.

If you are managing to avoid all gluten then I'd expect to see a considerable improvement after 18 days. However the first time I tried gluten free it didn't make a lot of difference and it does now. I didn't think I was missing gluten but probably did in things like sauces and gravy.

My standard gluten free breakfast is rice cakes and boiled or scrambled egg. For a treat (and because my family love them) I make buckwheat pancakes. You can make gluten free bread (Doves flour has a recipe on the packet), toast and serve with jam or honey. Or do a fried breakfast with hash browns.

Have you tried probiotics?

That is gf toast of course! (We are making it in the bread machine, can't get him to eat any of the other stuff)

I'm having the same problem with my LO - 6 yrs, I put him GF for 3 weeks (he liked the Doves chocolate stars for breakfast) and it made no diff - the Paed we saw told me he would have expected a diff so take him off this and he is now Lactose free, still no real diff. We are waiting for an appointment to come through for a bowel expert, but been told its 6 weeks Currently he is having up to 6 poo "accidents" a day and on the 95 th centile for height but only weighs 3st 3lbs

For gluten-free bread, I use this Ener-G bread (made with rice and flax seed but not brick-like) which can be found in the Free From section in waitrose and possibly some larger Tesco stores. It's a bit crumbly but makes fine toast; and this one is good for sandwiches.

For gluten-free sausages and burgers, I get them from Graig Farm in Wales (mail order) - they are fine. Really tasty.

Graig Farm do the best smoked salmon I've eaten, lovely place.

Friendlypizzaeater you obviously need to see a specialist but if you still have much of a wait have you tried probiotics?

I think tatt may have a point. We are trying really hard with everything, (making our own gravy and sauces with doves flour etc.), with no real effect. We are using same toaster however so I think that needs to be the next change)

I am thinking it might be more than just gluten. A freind of mine keeps her ds off modified starch as that causes a reaction. DS had baked beans last night with a severe reaction this morning. What is in baked beans that could cause a problem? He doesn't like gorilla puffs or chocloate stars the fussy thing.

He is on the 9th %ile for height and weight.

I would also recomned you get this book - called Tony's Lactose-free cookbook.
Not only does it have lots of good recipes for families but there is a lot of info about the peculiar places that lactose turns up - it can be used as an industrial bulking agent so is probably in your baked beans!

you might also need to go completely wheat free, not just gluten free, so that includes knocking out anything that contains MSG as it is derived from wheat

what is msg?

MSG - Monosodium Glutamate - it's in loads of things.

Getting a separate toaster will definitely help. Avoiding cross-contamination is vital - and you'll soon get into the routine (i.e. preparing glutenfree stuff first, then gluten - or washing hands after handling gluten and before handling glutenfree, all butter and jam only ever having a completely clean spoon used etc.). We found it easiest to only use glutenfree pasta for everybody - for two reasons, first because it's simpler and secondly because you need two draining pans (or a very efficient dishwasher to wash it in after draining the gf pasta before the normal stuff) as pasta draining pans are notorious for causing cross contamination due to traces remaining round the inside of the holes.

Hope DS1 feels a lot better soon.

Have just read loads about msg, ds has almost certaintly been eating it. I am going to have to up a level on my scrutinising of food labels! What about marmite then, that has natural glutamate in it, is that ok?

For toast you could buy the toaster bags for your LO toast. We had seperate butter and I checked everything - a normal shop took nearly 4 hours, thought the security guard in Asda was following me round

My LO was having a probotic drink every day but obv stopped these cos of the milk, but very excited last night to find a Benecol soya one in Sainsburys which he is having for his supper.

I got some GF "normal" sausages in Asda which the whole family ate and enjoyed with mash.

baked beans being a problem could suggest fibre as an issue. I know it seems odd for a high fibre food to be a problem but I've known 2 people with IBS made worse by high fibre diets. But perhaps he had the beans with toast?

You can buy a cheap toaster for 5 pounds, it's easier having 2 of them.

Ruthyn - afaik the glutamate in Marmite is not an added ingredient, like mono-sodium glutamate in many foods (used as a flavour enhancer) - it is a natural component. That means it isn't made from wheat extract so won't cause wheat-related problems. However it is pretty high in glutamate and glutamate has been called a neuro-excito-toxin - it fires the same receptors as aspartate (in aspartame); although both are natural amino acid products as well, found in all proteins.
Does that help? (don't worry if it doesn't)

Marmite is also very high in salt so wouldn't be the worst thing to exclude.

Have you seen the marmite official website btw? Pmsl at the fact that you can change the face of it depending on whether you love it or hate it!

he had baked potato with his beans, but interesting about the high fibre thing..

we are seriously doing no gluten now, with absolutely no processed food or contaminated toast, so if there is no improvement in a week, we will seriously be thinking it might be something else.. any suggestions welcome! the doctors are close to useless

I think you need to go back to your gp, tell him/her you are determined to go ahead with cutting things out of his diet and firmly request a dietician's support.

You seem to be a loose canon, thinking of every possible thing under the sun. I believe you are meant to eliminate only one group at a time and you should give it six weeks, then slowly re-introduce it.

Ruthyn, give it 2 weeks (at least), that's the normal suggested time for a clear out of any lurking toxins. If there's still no improvement after 2 weeks then think again. 1 week isn't long enough.

I've been told 6 wseeks

My doc told me 2 weeks and we should have seen an improvement in GF, though since then hes been on reduced Gluten cos he loves the dove cereals and rice cakes

2 weeks is long enough to start to see an improvement if you're going to as the toxins have mostly gone by then.

I wouldn't even think of re-introducing the food after 2 weeks though, 6 weeks would be the earliest I would do that (more likely 2 months), to give the body's over-reactions time to calm down and either forget about it, or go mental when it's re-introduced.

A friend of mine was diagnosed with wheat allergy (not gluten, wheat) and had to give it up - she loved bread and after a few weeks (in which time her grumbling symptoms had all subsided) she succumbed to the smell of fresh-baked baguettes and scoffed a half-baguette. She had a severe allergic reaction to it - not quite anaphylactic, but her throat and eyelids and face swelled up alarmingly, she got a rash all over her body and was very unwell for a few days. I liken this to the bod grumbling along with having daily to put up with the allergen, then breathing a massive sigh of relief when the allergen is removed, then going "NOOOOoooooooo!!!" when it is re-introduced.

Ruthyn - if your son is an undiagnosed coeliac then it can take the villi a long time to recover (up to two years in adults in extreme cases). For example if a coeliac is accidentally "glutened" it can take three months for villi to recover from the damage. Given the severity of your DS1's symptoms I would give it at least a month (and probably longer as thumbwitch suggests) before assuming gluten is not a factor. Also, as thumbwitch has also mentioned, once off gluten (if gluten is the problem) he will lose the antibodies and any reaction he has to gluten may be much more severe after reintroduction. If you are going to reintroduce gluten at any stage I would have piriton handy just in case of a reaction.

I would also cut out all milk - he may also be having a problem not just with the lactose but with the cows milk protein and this could mask any improvement with the glutenfree side of things. Provamel Rice milk is widely available. If things then improve wait a month then reintroduce milk only to see what happens.

At this stage also be careful with fibre - until my son's gut healed completely (he is coeliac and also allergic to gluten and milk) he could only tolerate very small amounts of high fibre foods.

Thanks for all the suggestions folks. I do feel like we are blundering in mid air sometines. We have to wait min 3 months to go to the hospital each time, and the gp doesn't say anything useful as ds is under consultant care. I am not happy exlcuding parts of diet without medical permission, but my consicionce (sp?) tells me we have to do something.

We will not be doing anything suddenly, and it makes sense to wait longer to see if the gf makes any difference. In reality, I think we are going to keep with the current regime for at least a month more until we see the doctor, where I really hope they will refer us to a dietician..or alternatively have something construtive to suggest. The first time we saw the doc was about 9 months ago now. I am getting qute fed up with them.

If you are omitting a type of food properly, I would also suggest you take photos before, during, after, so that you have some sort of evidence. Maybe even a food/steroid diary too. Evidence can be very useful, as I have sometimes found that doctors do not always believe what you tell them.