Newbie

[manda]

H,

Im Manda and I here as I need help my daughter has inherited milk intollerace from my husbands side of the family and at two and a half years old she is constantly constipated we are trying to remove all milk from her diet bet its hard.

After many false starts we finally have 3 tins of Galactomin 17 Formula and some senna as we are a vegetarian family we considered meat products till we found how many were mixed with milk.

After a visit to the consultant we have been told our daughter will have to undergo a bowel biopsy as this is the only form of testing is this true?

I am at such a loss and will accept any help as I feel like a nutter watching here like a hawk at childrens partys and family keep buying her chocolate (this is the family who all have hereditary childhood milk intolerance:eek: they just gave their children a lacitive).

Please tell me where to start as am sure once I stop breastfeeding my son he will develop the same problems as this is when they showed up in my daughter the same week as we introduced milk as her main drink.

At the moment it is so hard I don't know what to do or where to go as the doctors are as much use as a chocolate teapot and one even had us using lactalose for a year for constipation despite telling him it didn't help he never realised it was milk based and this is when I decided I need to educate myself.

Sorry this has got long but I'm sure you can understand my desperation and as I only got 3 hours sleep due to a little girl climbing the walls as she needed the toilet I need to do something quickly.

I have found milk free chocolate and cheese thanks to the vegan society it is when milk is not labeled I have problems

Thanks in advance

Manda

[rebecca c]

Sorry Manda I just replied in the other slot.

You should get researched up with respect to the biopsy. I have never heard of a biopsy for lactose intolerance but have heard of it for coeliac (this does not mean it doesnt exist just that I dont know of it). I shall be having it myself soon for coeliac. I think you need to get hold of as much information as possible - there is a book recommeded by pinkfairy on this website. Then see how much difference a dairy free diet makes (give her system 6 weeks to clear) and then make some decisions, dont let the doctors push you into anything until you are clear it is the best available course of action but do take on board what they say obviously and do stuff they suggest which is clearly going to help her.

My approach with doctors now is to accept I know a lot more about intolerances than they do but that they can be useful and helpful given the right assertive direction from me. I take what I need from them and research everything for myself too.

We all do a lot of our own dairy free baking - most of us use the pure margarine for this, and this is helpful for children as it is missing the treats which is hardest for them.:)

[Copper]

Welcome to the site Manda. You have my sympathy with the lack of sleep and an unhappy child.

Like Rebecca I have only heard of a biopsy being used to test for coeliac.

You need to check all food labels for milk products and if you go to here (another section of this site)
http://www.dairyfreeuk.com/forum/forumdisplay.php?f=24

you will find a list of things to look out for.

Baking and cooking everything yourself is best as you know what has gone into the product. Processed foods use dairy products especially added lactose for good measure!!!

My local health food shop sells "Whizzers" chocolate beans - they are dairy free, wheat free, gluten free Smarties. They do not have artificial colours or preservatives and they taste very nice. I am sure that your daughter would like them.

Giving children dairy and then laxatives seems a little cruel to me. You will have to try and be firm with the rest of the family when it comes to giving chocolate.

If you need any other suggestions just ask, I am sure we will be able to help.

[matt]

welcome.

take the time to browse the site as i'm sure you can find lots of help there already but don't worry about asking specifics as it's often quicker and easir to do that. and no one will mind.

try to relax, just remember that the average gp can't help it. they are jack of all trades and master of none by definition. they try hard but fail with this sort of thing.

get onto the dairy free diet and see what happens hopefully you'll see an improvement in her quickly.

[Pam]

Hi Manda,

My daughter suffered with constipation through milk and it was a dose of lactulose that made me realise what the problem was. Any small amount of milk causes her really bad stomach pains so it is quite obvious when she's had something containing milk.

I've never heard of testing by biopsy, in fact it is rare to be tested at all for an intolerance, my daughter was never tested. You can have tests done privately by York Labs but the full test costs over £200 and I'm not sure what the minimum age is. You send them a pin prick blood sample by post and they do the rest. They are the most reliable form of testing you can get, but obviously quite expensive.

Has your doctor referred you to the dietician? Although mine wasn't particularly helpful or knowledgeable she had her uses in the early days. I didn't like all her advice though and refused to go after a while (she told me to add extra sugar and fat to my daughter's diet to make her put weight on!). The dietician did at least write to the doctor and tell him to prescribe Wysoy until my daughter was 5 to ensure that she was getting all the nutrients she needed especially as she was such a faddy eater.

If the family must buy chocolate, tell them to buy Fry's chocolate cream bars, Ruffle bars, Green and Black dark chocolate, After Eights, Elizabeth Shaw dark chocolate mints/orange crisps or some of the dairy free chocolate made by Sweet William (http://www.dairyfree.co.uk/) which is available in some supermarkets. There are also Whizzers chocolate beans, footballs and speckled eggs as already mentioned.

Alpro custard style desserts are nice as is Yofu (dairy free yoghurt) and Swedish Glace ice cream is delicious, so there's no need for her to be without sweet treats.

Cheese is a bit rubbish, I only use Tofutti slices as I don't think the rest of it is worth having but some people her like either Cheezly or scheese. Being vegetarian I imagine you will use quite a bit of cheese so the dairy free diet my be a bit of a challenge for you. Vegan recipes will probably be quite useful for you.

Anyway Manda, stick around, ask questions and we look forward to seeing more of you. There is usually a chat on a Sunday afternoon at 2pm and any other time that 2 or more people manage to get there at the same time.

[ellsie]

My daughter was prescribed lactulose for constipation but refused to take it. I used to give her orange juice and that worked for her.
What type of consultant did you see? I would not be happy with what he wants to do to with such a young child without exploring other avenues. Can you get a second opinion. I wonder if you have seen an allergy specialist yet or just a paed. doc.

[pinkfairy]

Hi Manda

Welcome to the site. I am sure you will find lots of useful information here. They are a really helpful and friendly bunch!!

I have LI and so do my children. I was diagnosed after 4 years of really bad stomach problems (constipation). The way I was diagnosed was by a genetic test. They found out that I was carrying both genes so I was advised to have my children tested. At this point I thought back over my children's early childhood. My son was checked for CF because he kept getting chest infections which bought on asthma. He also suffered with constipation to which our GP diagnosed lactalose. No surprises that it didn't work. And he has always been hyperactive. My daughter suffered with eczema whenever she drank milk and also lacked concentration in school. Both children gave up drinking milk after they were one. But they did eat a lot of cheese products. Both my children were also found to have both genes and we now all follow a dairy free diet. The hyperactivity has gone and so has all the other symptoms.

The test your consultant is requesting seems a bit OTT. The genetic test is simple and accurate. All they do is wipe a swab around the inside of your mouth. My children just said it tickled. The consultants who run the clinic have just released a book all about their latest research into LI. You can find it on www.welstonpress.com (http://www.welstonpress.com/) They are the only clinic in the UK (as far as I know) who have specifically researched into the symptoms of LI.

I hope I have been some help. And don't be afraid to ask more questions.

Jane:)

[manda]

Thank you so much for making me feel welcome genetic testing would be ideal as all dh's family suffered badly as children so it would be a eye opener, I think I will order the book in the morning.

I will be asking loads of questions over the next few days I just need to eliminate milk, I'm doing my best but its hard I must make a batch of milk free Yorkshire Puds and find a cake for my sons birthday that my daughter can eat, I have a few recipies I am trying out this week:)

Right off to eat some of her black and greens chocolate as she is sleeping:D

[Pam]

Milk free yorkshire puddings are fine as long as you use soya or rice milk (preferably unsweetened). They don't seem to work with oat milk though.

Birthday cakes are a bit more difficult, all the character cakes seem to contain milk in some shape or form but I have found the very occasional very plain iced cake in Morrisons that was ok. There are a few companies that do mail order free from cakes but you will have to pay for the privilege. I have always resorted to making my own (using a standard cake recipe but substituting butter/marge for Pure and using soya milk instead of cows milk). You can do butter cream with Pure or vitalite or make a fudge topping/filling with melted chocolate, a little soya milk and icing sugar. It is usually special occasions where dairy free children miss out so I have always tried to send a packed lunch to any parties, just so I know that there is something safe for my daughter to eat and the hostess doesn't have to worry about the rest of the food.

[manda]

Thanks, the recipes I have use oil or chestnuts so I'll have to see but my dad has a fat free cake that his mam used to make so I'll have to see how they turn out if they are fine I'll post them on the forum. I have had a go at some of the cakes but didn't get the cooking time right.

I make most of my food from scratch so it's not too bad I did get lazy when i met my husband but I'll just have to get used to cooking again:unsure:

My husbands nana gave me a milk free recipe book years ago so I just need to find it in the tip also know as the loft.

I'm just missing my fave all time food which is a milk and cheese pudding so I'll have to wait till my daughter can stay at her grandparents for that one.

I cannot belive what has milk in it, do Starburst sweets as my daughter loves these, there is nothing on the list but I know they can contain certain amounts before they list things.

[matt]

not sure about the sweets best to ask if i don't get the chance later!

it was up to a certain % then they have to list but thats going to change soon.

[Pam]

Unfortunately Starburst do not appear on the free from list so we have to assume that they contain milk. It might just be "trace" though so if she only has minor symptoms you might get away with them. You could try e-mailing them.

Sorry, I forgot to put the link http://www.nestle.co.uk/Nutrition/FreeFromLists/

[manda]

Right I've ordered a copy of the book and I'm about to contact Master Foods about Starbursts

[PinkyPrincess]

Hi and welcome.
The first thing I would say is 'don't panic' and let things happen naturally. You can do a lot of research on the net and on here and you will find that these things come to be second nature.
Out of all my intolerances I've actually found dairy to be the easiest to manage, as things are generally labelled and there's increased awareness amongst restaurants etc. these days. And lots of subsitute foods too!
I would recommend talking things through with a dietician at this stage as it might give you some direction rather than feeling so confused.
But I left it till I'd been on my new diet for 3 months and I did end up knowing more than the dietician in the end!
I'm sure it must be very hard when it's a child to look after and she won't be able to understand why she can't have things, but again I would say talk to as many people as possible and let them know, as there are always people around who understand and can help so long as you share your problems with them.
Good luck with everything and keep us posted.
Pinks

[manda]

I have seen the dietician but she was usless we live in a area with high unemployment rates and she is used to telling people why they shouldn't feet their babies takeaway eveynight she had never heard of milk intollerance in children sent us a list of suitable ready meals and told us to keep a food diary, so we could identify what made her constipated as it was bound to be something else like not enough cereal.
I am off to the healthfood shop now to have a proper look at what they stock

As for restraunts we find the only vegiatrian option is offten pizza or lesanga(?) so that rules them out and I don't do childrens junk we have even found milk in oven chips (why?)

[Pam]

They use milk to bulk meat out, to make flavours stick to crisps, to make chips crispy etc. This is why you have to read every single label as it is surprising where they hide milk. McCains Homefries are dairy free as far as I can tell from the label.

I think that eating out will be particularly hard for you as you are vegetarian. This, to most places means no meat or fish - lets use cheese instead (and probably not vegetarian cheese either), so no good. A restaurant with a vegan choice is probably your only safe option. Chinese food might offer a few choices but otherwise you will be very limited.

You don't need to go mad in the health food shop. The only special products I buy are soya and rice milk, Pure spread, swedish glace ice cream, tofutti cheese slices, yofu and alpro desserts. I occasionally buy Whizzers sweets and soya dream (dairy free cream) but almost everything else can be found on the supermarket shelves by careful label reading.

I agree about dieticians, it doesn't take very long before you are more knowledgeable than they are about milk intolerance and I am amazed that they know so little when there are so many milk intolerant people about. They have their uses though, they can check calcium intake and identify any nutrients that are lacking from the diet and can make recommendations to a doctor if necessary for prescriptions to be written (we had Wysoy on prescription until my daughter was 5 years old).

It does get easier - no less frustrating though!

[matt]

the cynic in me thinks that they became dieticians for the sake of having a qualification.:mad:

didn't want to put the effort in to become doctors etc. so they choose what they thought would be easy, i mean how hard is it to tell people to eat more healthy food. then suddenly they realised there was just a little more to it than that.

the good ones are probably sufferers like us. they researched and gained the qualifications to aid themselves, the others...... not worth the air they breathe.

so the first question to them should be "what do you have to avoid?" that'll sort out the wheat from chaff.

i remain sceptical about the blood tests...... but if it works for you and you want to spend the money, who am i to say no?:cool:

[Nic]

Manda - I've got a friend who was brought up in a vegetarian family with a dairy allergy. And she's the most active and healthy person I know - so its entirely do-able. Her mum didn't use any pre-prepared food, but just did standard vegetarian stuff either adapted or (eg pizza) half with cheese and half not (often with silver foil across the middle of the baking tray to avoid the two mixing).

If you're really stuck, I can ask for some recipes. But from what my friend cooks now, its basically Cranks style vegetarian cooking without the added cheese (which works very well - she does excellent puddings!).

Good luck.

Nic