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....

if he has had a negative test for coeliacs then why are you going gluten free? surely that would have showed up??

as for the milk, I think you're better going dairy free rather than just lactose free

same prob and no the docs are no help. Have you read 'digestive wellness for children by elizabeth lipski?

Rice milk with added calcium is great. Orgran buckwheat pancakes and apple and cinnamon pancakes.

I would cut out all grains first so no gluten whatsoever then you can re introduce oats and rye.

supplemwent with flax seed oil. It helps repair the gut and also bifidus infantis probiotic powder.

mash potato , sardines and green leafy veg for calcium.

My first blood test for coeliacs came back negative, I then went on a very high wheat and gluten diet for about 4 months(killed me!) went back and asked for another test which came back positive, I then had a biopsy which confirmed coeliac disease. My dd's, sister and mother all have it too.....maybe get a second opinion.
As for the lactose, I agree with thisisyesterday, why not just go dairy free? Dairy intolerance can also be linked with coeliac disease. Good luck

the coeliac blood screen is KNOWN to be unreliable in children under 5, and there are many adults with confirmed coeliac by biopsy who have had a negative blood test, we had to print this info off the internet and take it to our GP who was adamant that, once tested negative, DS was def not coeliac (he was being tested as sister is coeliac). he is now being retested regularly as he has "borderline anaemia" which they cannot explain.if he starts becoming more anaemic, they will redo coeliac test (though I may yet end up asking DDs specialist for HIS advice on younger sibs as GPs are mostly ill informed IMO)

you might need to actually feed him MORE gluten to get a diagnosis, which will be hard in the short term but ultinately to his benefit

cut out all dairy first, if his gut is being damaged by gluten one of the first signs can be dairy intolerance as they can't digest properly

you know your child - do not be fobbed off - good luck!

just to clarify the difference between lactose free and dairy free - DDs gastro specialist says very few people are actually LACTOSE intolerant, ie, have a problem with sugars in milk. What most people have is intolerance to the PROTEINS in milk, which means avoiding ALL derivatives of milk including whey etc, not just opting for low lactose or lactose free milks, which still have all the proteins in.

those sensitive to heat can have secondary lactose intolerance, which clears up on a wheat free diet. Unfortunately allergies and intolerances are rarely simple.

If he is a fussy child why not try adding digestive enzymes first and trying the exclusion diet if they don't help? Peptizyde is posibly best but very expensive, you could try Biocare Glutenzyme Plus, which is cheaper. However Peptizyde may also be easier to get into a child.

If you are going free from then check out Sainsbury for gluten free flour and gluten free jaffa cakes. Even a fussy child is likely to eat those. Thy also have a small frozen free from range and some of the beefburgers they stock are gluten free.

What does he like to eat and we can maybe suggest suitable alternatives?

Visited the hospital today. They are sending him for a scope of the top and the bottom end- how incredibley traumatic! His stools have blood in them, which is why they want to cancel out gut inflammation/bleeding before we change his diet. I now don't know what to think, as was really gearing up for the food exclusion thing. My gut (sorry) feeling is that it is related to food, but the blood does worry me, is this normal in coeliacs?

Assuming the scope does not find anything, it will be about three weeks away before we can start gluten and dairy free proper. Tried gluten free bread after microwaving it today, and it was edible. The main issues will be cheese and milk, as he does not like soya milk, and I hear that the dairy free cheese is very hard, havne't managed to get hold of any as yet......

tatt - what do you mean those sensitive to heat can have secondary lactose intolerance.

i have been keeping ds off wheat but finally relented as everyone is saying there is no reason for it but i feel its not right

sainsburys do gluten dairy free fish fingers. and a lovely free from chococlate cake but the jaffa cakes are horrible

sorry, I'm a poor typist. Was meant to be wheat.

WOW Mrs D that is really interesting, that it took four months!

To OP, I wouldn't attempt to cut out gluten yet, remembering that coeliac false negatives are not that uncommon, rather to cut out the other things one at a time (or maybe corn, rye and barley as one group).

You might find that you can pinpoint gluten and/or lactose as the cause, which would give you and drs a better idea of what to do next (maybe another test?) - and give your son a more varied diet in the longterm. Sorry I don't know that much about lactose and diary intolerance but, there is a higher gluten content in bread, and a higher 'wheat' content in weetabix+ wholegrain pasta. That is a good way to tell whether the problem is gluten or wheat. Ruling out corn and rice as a cause would also be helpful (beware most breakfast cereals are flavoured with barley).

Do remember that grains, particulary whole grains, are a source of insoluble fibre, so by removing wheat any success could be down to the reduced insoluble fibre intake rather than the wheat itself. Some people, particularly little people, can't tolerate much insoluble fibre. White bread can be included in a low-fibre diet.

Could you maybe ask to be referred to a dietician (a good one)?

blood in stools can be lots of things but something like an anal fissure would be a common cause in children. It could also be caused by being coeliac. You will need to keep him on a gluten containing diet before the tests.

If you go gluten free later then Mrs Crimble's cakes are good. They do a lovely gluten free chocolate cake and a fruit cake with rye but no wheat for testing if rye is a problem. Despite the name buckwheat contains no wheat and buckwheat pancakes make good breakfasts.

Corn and rice are staples of gluten free diets.

We are opting to delay the tests and concentrate on removing food groups to establish which ones do the damage, if we can. I suspect the doc won't like it, but we can put him back on a 'normal' diet before future tests if need be, that is for the future. I am concerned with now, and want to make ds and our lives easier ASAP.

Some really useful tips given already. He was ill the other day after barley flavoured cereal, that is one to watch out for. He hasn't had an accident since we cut down on the gluten, and is getting slightly more formed poos, so I am feeling confident we are doing something right.

I am finding it tough moving suddenly to gluten free, it is frustrating inthat that things I thought were gluten free (like sausages) are stuffed with it! Most days there is none now, although lactose creeps in more than I would like, that is hidden in so many things! I have started taking his food into nursery as well. Our sandwiches when we were out the other day were very dissapointing.

Someone told me modified starch can cause a reaction, is this widespread, or linked to anything else?

Still don't know what to do about the milk, as ds refuses to drink soya milk, and dh won't agree to stop buying the lactose free stuff. So useful to hear that other people have got through this!

Coeliac UK print their annual food and drink directory which makes shopping for GF foods a lot easier. You don't have to be a member to get a copy and can buy it from their shop. I think as well though that you are elligible for membership if your GP has you down as "treat as Coeliac" but you would need to check.

sausages....M&S outdoor reared pork are GF, as are a couple of the Sainsbury's "Taste the difference" range. Black farmer and Debbie and Andrew's Harrogate sausages as are Helen Browning's range which you can get in Sainsbury's.

Salute pasta is the best off the shelf variety. Can be found in Sainsbury's.

Nature's path do a couple of gluten free cereals, mesa sunrise flakes and some horrific chocolate confection called gorilla balls or something!

Most breads from off the shelf are pretty rank, but most supermarkets do English muffins which are good toasted. I toast them then make my packed lunch with them. You can also get GF pizza bases in most supermarkets as well as biscuits and cakes (kallo GF jaffa cakes are yummy!!)

If your GP is happy to treat as coeliac without the biopsy he will probably get you bread on prescription. The glutafin select white bread is actually very nice and about the only one that you can eat straight from the bag without toasting first.

I would get the biopsy done though; it's the only way to get a sure fire diagnosis at the moment.

ds1 is gf cf (casein is milk protein) free; ds3, ds4 and I cf.

We're intolerantrather than allergic-but ratherseverely: pain,diarrhoea etc.

DS1 has a gf diet as he isnt coeliac bt its relatd toasd behavioural issues (quite common)

The ytrick is to readeverything I tjink: sansburys taste the difference include GF sausages in its normal range,tesco sell them in the free from.

Dove farmflours are fabulous but we've learned that bread is a no go unless fresh and ditched within a day (GF pitta OK though, and breadsticks)

You do get the hang but it takes a while.

Our local butcher makes gluten free sausages but they were terrible .

Really would recommend the digestive enzymes, even if only for fast relief/ the times when you miss some lactose. OH was lactose intolerant for a long time and only recovered after having lactase. He can now have lactose in moderation without the enzymes.

Gluten free bread made with doves flour and rice milk tastes a bit more bready than when made with ordinary milk, IMO. It doesn't keep but if you leave it a few hours or to the next day you can slice it more readily, freeze some and then use it for toast. Mine does tend to crumble everywhere when I get to the end of the loaf so I use that up with soup.

Although I haven't tried them personally other people have found quinoa flakes and mix with things like dried fruit for breakfast.

Will he eat baked beans to help test if fibre is a problem? If so hash brown, bacon and beans are a breakfast option.

I really would not cut out gluten without having the coeliac test first.

Yes, blood in stools can be caused by coeliac disease. My DS was referred to hospital for that very reason, and was confirmed as coeliac by biopsy. (He had a negative blood test a couple of years earlier when he was tested because one of my older DSs is coeliac).

It also causes anaemia. You really should get a proper diagnosis before restricting foods, because coeliac disease is not a disease which just affects the gut. It can have other major effects on the body too-it is an auto-immune disease and as such need careful monitoring over the years. (osteoporosis, diabetes, skin conditions plus other serious complications.) You will not get this professional supervision if you just exclude foods from the diet.

Once you have taken gluten out of the diet, it has to be re-introduced for many weeks in order to get a reliable test.

Again, I would urge you to reconsider and not start excluding foods yourself as in the long term it will do more harm than good.

I agree that you mustnt cut out foods before the test

After the test if its negative you can try eliminating gliten to see if its an intolerance,but whereas an intolerance is a PITA Coeliacs is important and must be eliminated first.

I have celiac disease. I wasn't diagnosed until I was 23, after YEARS of unexplained anemia, diarrhea, horrible stomach pain, etc. Six months ago my son had diarrhea that wouldn't go way no matter what we did. He got the blood test but it came back negative (which apparently is common for infants and toddlers.) After another few weeks of diarrhea our pediatrician said to go ahead and try him on the gf diet. He said there was no need to put him through the trauma of a bowel biopsy because a gf diet certainly wouldn't harm him as long as he gets plenty of whole grains from other sources. We did, and the diarrhea cleared up right away. I'm going to leave him on the diet for now-later when he's older and can tell me if he's experiencing pain or whatever (he's only 18 mos now) we may try wheat again. I'm not sure what gf products you have in the UK- here in the States there're a lot. They're a bit more expensive, but worth it There's a brand called Ian's that makes chicken nuggets and fish sticks, and Pamela's makes a great mix that you can use for muffins, pancakes, etc. One thing I would watch out for is BARLEY MALT FLAVORING. It's in quite a few things and I always react badly to it. As far as the milk goes, my son likes rice milk pretty well. (He's not fond of soy, either.) If your DS has to go on a gluten free diet, it's not as bad as it seems at first-eventually it's just second nature!

sansmama-you were advised by a paediatrician to try the diet-ruthyn is planning to reject the specialist's advice to have an endoscopy and introduce the diet anyway.

Coeliac Disease in NOT an allergy; it s NOT an intolerance. It is a DISEASE which affects the body in many ways and if diagnosed needs proper medical supervision.

Yes, you're right, Tiggiwinkle. People ask if my son and I are "allergic" to gluten and I tell them "no, we have a disease which causes a certain reaction," or whatever. I was just sharing my own experience with CD. I certainly don't mean for people to reject a dr's advice!

instead of bread you can use pitta bread or rice cakes (the ones w/o salt)

after talking to coeliac uk today and some more thought, I think we are going to retain the gluten in the diet, and go for the tests. Will keep a very close eye on what he eats and any reactions however. If it gets back to the level of discompfort before we will have to modifiy the diet I think anyway, but hopefully keep enough gluten in to get accurate tests. (Lots of soiled pants and nights...sorry if too much detail!)

The bottom end endoscopy requrires a 26 hour fast , but it has to be done, it is in his interest in the long run.

I am very glad to hear that ruthyn. I hope you don't have to wait too long-my DS's tests were done very quickly after our inital appointment and the surgeon told us on the day of the procedure that she was pretty certain he had coeliacs.

Good luck!

really is best to do it now, ruthyn, as once you see an improvement you won't want to go back to the pre diet stage. It's only 3 weeks away so feed him plenty of gluten now and stock up on different food for later.

the trauma of the tests is now over, they have taken biopsies, but didn't see anything obvious onthe scope (didn't get clear views either - long story!) apart from some mild 'colitis?'. The instant coeliac test came back negative. We will hear the biopsy results in two weeks, the next consultation is in the middle of May!

So, most likely is we have two months to wait until to hear what the next step is, and ds is more emotional and unsettled than ever!. I am curious to start gluten free just to see, dh is not so keen...