Oh Poo....literally! Sunderland test shows reaction to casein.

[Ben10NeverAgain]

We are waiting for an NHS dietician referral already as his diet is crap and I don't want to take dairy out without making sure that he gets what he needs.

I did try dairy free unsuccessfully when he was a toddler due to his symptoms and I was basically told that I was over-anxious and it was just toddler diarrhea . I hated doing it but probably it was because I didn't have any backing from anyone medical.

I told the paed that we were going to send off for the test and she was interested in it and didn't dismiss the idea.

Bum

Oddly enough the ex has just this year been diagnosed with a milk protein intolerance! He's 44 and not only has his ulcer gone but his behavior is noticeably less ASlike iyswim. I've been so shocked at the difference in someone that old.

(It's so many little subtle things that all add up to an individual who still has the same soul he always had, but is soooo much easier to get along with day to day).

It's really amused me as we already knew the ex's Grandad was totally dairy intolerant and my DS was diagnosed as a baby. DS's half-bro (non dairy free) is diagnosed HFA. As far as we are concerned there is a massive genetic link with the gut/dairy intolerance/ASD.

The ex is now saying the medics will finally diagnose DS as being properly AS as opposed to just "social communication disorder with autistic traits" when he's 44, or that I should just make him drink milk before he next sees any peads. (Not an option as the poo explosions are too severe but I get the joke!).

Really simple changes you can start implementing now:-

Check labels of things like sausages, crisps & ketchup and choose the one with no dairy
Switch to pure margarine
Start adding a little quinoa when you cook rice to increase the calcium content
Start adding increased levels of "good" fatty foods to the diet as UK kids get a lot of their dietry fat requirements from dairy typically
Hide a bit of frozen spinach in you bolly sauce or shepherds pie.
Almonds, flaked, chopped or as a butter can be added to all sorts of recipes.
Swedish glace ice cream will prevent him feeling too cheated & deprived.

I agree about waiting to see a clinical dietician before removing a major food group totally, but I think you could try sneaking in good fats and calcium rich foods gradually. A total dietry switch all at once might be too much for your child to handle.

Also try to discover if the issue is just cows milk protein or like DS & his Dad all ruminants. Neither can tolerate sheep or goats either & people often try and offer these as a substitute.

If you want any help or dairy-free versions of family faves, feel free to pm me.

Thanks so much Bochead. That is really helpful. It was one of your old posts that I was just reading about how to get the nutrients into children when they are dairy free when I saw that you replied. DS has the normal AS dietary regime of beige food so it will be hard to sneak stuff in but bolognaise/shephards pie sneaking is definitely possible. :)

BTW I'll definitely PM you in the next few days to get some recommendations. Thanks for the offer.

I agree with Boc, in my family there is also a link between AS type traits and dairy intolerance.

Dd1 AS? was dairy free for all of her childhood although she isn't now. [she thinks to herself.]

My Uncle was dairy intollerant and very AS but no dx of course.
My cousin, is gluten intollerant and has loads of AS traits but no dx.

Dd3 I keep on a minimal dairy diet and I have my suspicions[sp] about her but am too scared to get her tested as I have no idea how I would change her diet.

Am watching this thread with interest.

Ineeda I actually sent off for the Sunderland testing kit 18 months ago and it wasn't until I got his dx that I actually did it. I've been reading what Boc has written on here and other threads as well as perusing Ocado as you can check a box that says dairy free so it filters what you see. I think that I'll wait until half term to do any changes even introducing new stuff as my brother is getting married on 2nd June so I don't want him to have any withdrawal symptoms and going hyper at the wedding :D

DH has asthma, eczema, hayfever and scalp psoriasis as well as getting yeast infections all the time. I am very sure that he is intolerant to food. He is definitely intolerant to something in alcohol as he flushes bright red when he drinks.

I've heard that the new Alpro Hazlenut milk is very tasty.

So long as I can feed DS sausages/nuggets and chips type meals, avoid takeaways and give him soya yoghurt it might not be too bad to do a 4-5 wk trial. I just checked my Aldi sausages and they are completely dairy free.

Is bread CF? When I used to make my own when I was housewifely when he was little I used to have to put milk powder into the bread machine.

Also my dad is half Japanese and I did read (somewhere) that intolerances in Japanese/Chinese people are higher as it is not an integral part of the traditional diet? Who knows but I know that both DH and DF hit many of the traits for AS, just not all three sections of the triad.

Interesting about Ocado, Ben.

When Dd1[23] was dairy free it was a challenge. I used to go to the health food shop once a month [on child benefit day] to buy yoghurts and soya milk.

I got little or no support. The consultant said to me " If you think the milk is making her ill, stop giving it to her!!" end of discussion. I was pleased he believed me after several GP's but I could have done with a little support.

Got to do the school run.

Bread is definitely a case of read the label. Most Warburtons loaves are dairy free, but the Posh brown (can't remember what it's called) has milk powder added. Avoid bakery bread unless they give you specific ingredient information (though I have no idea why they can't give free access to what's in the mixes they use instead of insisting you ask).

You'll find that things like doughnuts and shop bought cakes are almost entirely out. Some crumbed foods have milk powder in the batter, some don't. Also ready cereal packet labels carefully. Loads of them have milk added in some form.

In fact, you will spend the next few months of your life reading every single label of everything you buy. (DS1 and I are both lactose intolerant - we had him pretty much dairy free for the best part of a year until we realised that he was like me and fine with reduced lactose products. These days we jsut go carefully, but pull back on the dairy if we have an upset tummy for any reason)

Oh and the alpro hazelnut milk does taste nice as a drink, but it's very sweet & doesn't actually contain much protein, so if he's prone to bad tempered hunger crashes, don't rely on it to fill him up with breakfast cereal.

Warburtons is DF!! Oh ouryve you are the bringer of good tidings. So long as my little fussy ones can still have his white bread ham sandwiches (with Pure) then the world will be fine Ooh I see that Heinz salad cream is OK too as is Heinz ketchup :)

All of the rest I'll have to have a good look at and find good alternatives. I am crap at baking so can do banana muffins or similar.

Mmm, might have to go back to the drawing board on the milk situation then. When he was a toddler I tried them all and I think that we ended up on strawberry Alpro as the only one he'd have. Not really a good long term choice so will have to test out his very mature 6 year old tastebuds out on the various milks.

I'll have a look in Sainsbury's next week and get some different varieties of food in so that we can test them out gradually so he doesn't reject everything new all at once

Good idea to see the dietician. I think casein is trickier to remove without advice than gluten. We only tried it for a month but luckily you should see an improvement quickly if there's going to be one. (We didn't but no major spike for casein anyway.) No spike for gluten, then?

no Spike for gluten Ellen which I was happy with as I really didn't want to have to wait six months to see if it worked.

Yeah! We had a small spike for gluten and a blip for casein. One month CF and 7 months GF, with no change in behaviour. Of my 3 boys, he's got the most normal poo! In his pants, usually, but normal! I think those who have gut issues, toddler diarrhoea etc (like my NT (?) DS1) see the most benefit. Here's hoping, anyway.

I'm crossing my fingers. He is so pale, has dark circles and always has and has never done a proper Poo. No wonder the poor kid had trouble wiping! The other day he told me it was a hard Poo. I looked and it definitely wasn't hard!!

Ben10 - have you spoken to Sunderland people? they are really helpful, and when I had dd1 tested, they had a booklet they produced which outlines all the food groups, how to replace successfully etc.

did they say anything about excluding other things too? the Sunderland protocol is often abbreviated to gf/cf, but does include msg, artificial colours and flavours (and natural too, for the most part, due o the msg content) and sweetners and preservatives too. I wonder if they recommend cutting out htese things for 'only' casein?

ime, it is the 'extras' (the sweetners, preservatives, msg etc) that cause more trouble in changing a diet than either gluten or casein.

you mention a Japanese/Chinese connection - there are higher rates of dairy intolerance found, and there are some interesting theories re: links with blood groups (eg groups A and B are not rare in Asia, and rates of dairy intolerance amongst people with these groups is far higher than in group O). funnily enough dh and I are both group B - dh has a confirmed dairy intolerance, dd1 does too (although she tested negative for casein on the Sunderland test). the whole 'eat to suit your blood group' thing is very interesting.

Hi sf. I called them this morning as it was a very confusing report. he didn't say to avoid anything else at all. He was very much for me speaking to a dietician before embarking on this. I need to get some good supplements into him but was holding out for the results.

My parents and I are all ab positive. I have no idea what dh and ds are.

Ds is really looking forward to it having sold it on him having "special" goodies! I think he liked the yuckiness of freezing his wee

There is plenty of crap in his diet. I'm hoping that the cf alternatives are additive free as that would be two things in one go!

Well, the warburtons white farmhouse and the toastie loaves are definitely safe. Ditto the M&S white farmhouse. Things like criossants are out and crumpets are a PITA, since they may or may not have dairy in. The Warburtons crumpets have very simple ingredients but are "produced in a factory which uses milk" which I guess is more important if you're concerned about potential anaphylaxis

BE and M&S fish fingers are dairy free and I THINK youngs are. I know less about chicken nuggets, but I do know that the M&S ones in farmhouse crumb do have milk in (enough to set me off farting, even on a good day), but the southern style and the lemon and pepper crumb ones are clear of it.

And just as you think you've got to grips with a product, they go and change the bloody ingredients, so you can never stop packet checking. Supermarket own brands are generally better at allergy labelling than other brands, though. Things like whey powder and milk-derived lactose are so often used to "improve" flavour and texture, even where you think they'd have no place at all.

And medicines are often chock-full as well

Interesting about the blood groups as I had no idea at all there might be a link. AB- is the group of for the milk protein intolerant family members. DS's family is Romanian so not a traditionally dairy free nationality like the Japanese.

If he likes beige and bland foods then almonds may be your friend for extra calcium so long as he likes the flavour. Our quick brekky is usually a nut/seed butter on toast.

Tinned sardines with the bones in are a great "fast food" for the dairy intolerant when you are feeling lazy. (DS loves sardine and spinach sarnies) McDonald's is often safer to eat out at than the gourmet organic cafe type places . Wetherspoons is NOT your friend now - it's the worst high st gaff I've come across for the dairy free, just avoid.

Avocados when in season are a great source of the right type of fats, and very versatile. Somewhere I have a recipe for chocolate mousse using avocado. The fat content of the diet is extra important for our kids meethinks as the brain is 90% fat. Also dairy contains an awful lot of fat soluble vitamins so I think seeing a clinical dietician is a brilliant idea to ensure your child still gets enough of these when you go dairy free.

I crack an egg over homemade pizza having never found a dairy-free cheese alternative that didn't taste like S%&*t. We have a homemade pizza and popcorn night once a week and that's how I got DS to try diff veggies (as toppings). Once he's had them on a pizza he'll accept them as part of other meals. Worth trying for a fussy eater as kids love making their own pizzas - it's a trick that several of my friends have nicked off me now.

You'll take a few months to read packets and get comfy with brands (often the basics range of biscuits etc is most likely to be dairy free). Then all's well until some ijeet decides to "improve" a recipe! Often the basics range in supermarkets has the least amount of e numbers/stuff you can't pronounce & is most likely to be dairy free, for naughty items like biscuits.

I do a lot of scratch cooking - not cos I'm a domestic goddess type but cos I just don't have the patience to squint at all the ready meal labels. This means by default DS actually has a diet with less additives than many of his friends lol!

I'll try and type up some "lazy-arsed mam" muffin recipes for you next week.

If he has school dinners - watch out! Schools vary a helluva lot in how they interpret this in terms of providing a full balanced meal & if your school cook isn't a great one, then a kid ends up just going hungry. Make sure you check for a few weeks what the child is actually getting as DS came home crying with hunger when we tried it at one school. Other schools are fab.

Oh gosh, there are so many good things for him that there is no way that he'll eat:

Sardines - I can imagine the face now
Egg on a pizza - ditto
Avocado - no way
Nuts - nope (except if they were ground)

I have to get my energy levels up myself to start with this. I'm just starting to fill in my own DLA form based on my inability to cook a meal from scratch due to the pain it causes me. If I can start this thing based on throw in the oven type meals then that's going to be better for my own health.

If it is right and I do notice a difference in the first month or so then I can do it "properly".

I do try to buy Sainsbury's basics as much as possible as I find that they are decent quality so am pleased to hear that they might still work for CF.

I think what I need to do is to write down the meals that I know that he will currently eat without any issues and work out how I can CF them if necessary. No point trying him with new meals that are going to completely blow the whole thing out of the water. Then he'll just start refusing everything new.

The thing is before I got ill I was always a cook from scratch person. Now I buy frozen mashed potato

Thanks for the offer of the muffin recipes btw bochead. I offered to do some baking today and he turned me down as apparently the texture of my cakes are always horrible . Very much into texture my little boy

BTW, if you're not avoiding soya, the alpro soya milks are very nice. Ready brek is calcium fortified, as are these
www.kelloggs.co.uk/products/ricekrispies/cereal/rice_krispies_multi_grain_shapes.aspx

Things like potato waffles and smiley faces are blissfully dairy free, btw, but be careful with a lot of the coated oven chips, since a lot of those have dairy. If you're struggling with cooking from scratch, it's always possible to have a few things like that on standby for him when you're having something he can't have. (And yes, I struggle with mashing potatoes, so do sympathise)

BTW - if he likes mash, maybe you could get someone to help you make a big batch of it for him (it's nicer without soya milk in - that gives it a horrid taste - when i was avoiding I just kept the taties wet and added extra pure spread) and portion and freeze it, yourself.

Ben - The Allergy Show is on at Kensington Olympia this weekend. Free tickets can be found online. Just been there today and found some beautiful chocolates and icecream
The mashed potato - a toughie. I personally don't think that normal potatoes freeze well mashed - sweet potatoes freeze better, or potato combined. A ricer is the best way to mash potatoes - saves the arm ache and the inevitable rogue lump - that also inevitably ends up on DS3's plate
Lots of nice milks - we like Kara coconut milk a lot.
At first you think of all the things that are going to be difficult to replace, but bit by bit you find replacements, so even fussy eaters will probably be able to replace everything.
Look at the backs of packets carefully. The same products - different brands - some have dairy - some don't. Heinz tomato ketchup doesn't use whey powder to thicken, some cheaper brands do. Same with crisps. Most that are flavoured have whey powder to 'stick' on the flavour, but then you'll find bacon rashers (not frazzles) don't. Rich tea fingers don't have milk, rich tea circles do (go figure). Same with fish fingers. Don't think that you need to go and get free from ranges - unless you are going gluten free as well. Plenty of brands don't add milk to the crumb.
Personally, with a fussy eater, I would go for a calcium supplement. Thats what we were recommended by the gastroenterologist. Saves the worry of trying to find acceptable alternatives in the early days.
If you want to pm me anything you think you might struggle with replacing, I have shed loads of ideas.

Auntevil Sorry I didn't see your reply. I wish I could have got to the Allergy Show it looks linteresting. What was the icecream as a matter of interest?

I'm going to get a ricer. DS would love "helping" anyway. That would sort out the mash. I saw it on TV and he didn't even peel the potatoes as the peel stayed in the ricer. Sounds good to me.

Bacon rashers are one of his favourites so that's great. It's going to be a matter of checking everything at the moment I think. What I'm doing atm is introducing the replacements gradually which I hope is OK. I'm checking all of the regular bits that I get and then seeing if they're OK. I don't want to scare him off!!

I bought 3 types of milk yesterday. The Alpro hazlenut has been a huge success with the little shredded wheats with apricot in. I'm very pleased about that. The Oatly and Alpro Soya looked like I'd poisoned him!!

Is there a particular calcium supplement that you were recommended Aunt?

Thank you