Spoke to nutriologist about food intolerance... any suggestions for Wheat/diary/oat/soya/nut/potatoes/egg/onion/fruit free lunches????

[Chandra]

Basically that's it, he can't have all the above though he can eat pear, melon and apple. I'm stuck in carbohidraes as he may have rice, corn and buckwheat but only once a week. Any suggestions?

I'm feeling a bit disheartened by this, I was expecting to be told that testing at this age (almost 2.5) may produce many fake positives, instead we were told that they were so surprised by the results that asked for a second sample (I thought they have lost the first one). What the nutriologist said is that she suspects DS's guts are underdeveloped and asked to get some enzymes that increased the permeability of the gut (???), she also said that we needed to get him off diary and suggested something called Tiger White, what's that and where can I find it?

Anybody with a similar diagnosis? I really don't know what to expect and also I am a bit worried as she mentioned that DS placid behaviour (too placid for his age) may be related to food intolerances. I'm concerned about coeliac disease and feel particularly vulnerable at having such a sensitive kid but virtually no access (private or on the NHS) to a more specialised consultant. Sigh* (sad)

Not tested for butter beans, but he can have string beans freely (what are they BTW?)

Chandra my ds cannot have wheat, gluten, rye, dairy, lactose, soya, citrus acid, citrus fruits, fruit sugars, bananas, vinegar, yeast and a few e numbers. Welcome to the world of longest shopping trips ever.

My ds lives on meat and veg really. Snacking is difficult and he only drinks water or rice milk.

Goodluck, it does get easier as you get more knowledgable and there is alot of advice and help out there

With reference to the bread - you can get wheat, dairy and oat free bread (as far as I know, if it's gluten free, then it is wheat and oat free) in most big supermarkets. We also buy the flour, and make it ourselves sometimes. I think it's rice flour though, can he have that? We also buy pasta made from rice flour, and ds eats lots of basmati rice. You can also get gluten free pasta made from corn. Can he have that?

DS eats lots of oily fish - up to the max allowed per week, as he really likes it. I just buy a tin of each variety off of the shelves (make sure you get boneless, or it takes ages to prep!).

We did remove dairy for a while from ds's diet, and replaced with rice milk. I think ours was called provamel (most supermarkets). If you're only going to use it once a week, you can also get a brand called rice dream (only found in Sainsburys so far) in 3 packs of small cartons (about 250ml), so you're not wasting loads. DS quite likes it I think.

DS has a porridge from Sainsburys 'free from section' which is rice and millet flakes. It's not too bad really.

I have a big chart on my fridge (sad mother alert! ) and it has the days of the week on one side, and foods on the other. If he eats something on the list, I put magnetic marker on it (you can get 100 for about £3 in IKEA), and then I can see at a glance what we've had already / can still have more of.

Some Slimming World recipes for crisps / tortilla chips made from pasta and nuts made from chick peas might help with 'treats' for him. CAT me if you want the recipes.

HTH a bit

I make my own sweet potatoe crisps which can be a bit fiddley but walkers plain are great for coeliacs so mine s allowed those. Sainsburys hula hoops are also msg free but all other brands have msg apparently

hi chandra butterbeans are shame shape as kidney beans but bigger and flatter and white in colour mild tasting can be bought tinned or dried
have you mailed suma going to wholefood store will make shopping easier but supermarkets are good thesedays also.morrisons have good stock they sell rice milk

you can also get msg free wotsits in a white packet (only saw them in kwicksave -who are no more) most plain crisps dont have msg but are high in salt
walkers potato heads are msg free too
i have msg allergy its terrible stuff really think it should be banned (as it is in some countries)

Chandra I believe string beans is what the Americans call runner beans.

Lunachic, missed your post about the recipe book, I would love to have the reference. I was about to ring Suma, will ask about wholefood stores that stock their products.

MAddyd and Laura032004, can I follow you around while you do your shopping, please???? There should be courses about "Shopping for allergies" with field trips to the supermarkets (I wish!), suppose I should plan to spend a couple of mornings at the supermarkets without DS just to get an idea of what is available.

Laura it didn't help a bit but A LOT thanks for that. The idea of the chart sounds excellent, I should implement something like that. I was thinking of creating a set menu for the week to simplify the things (in the likes of Tuesdays we have oily fish and thursdays chicken, etc.). Have picked up the food menu from the nursery (trying to see if we could do packed lunches that were at least a bit resemblant of those other children in the nursery get, but it may be tricky)

BTW I don't want DS to feel different but don't know how to sort the problem. The image of his little friends having a birthday cake at the nursery while he can't have it, breaks my heart . Do you have to be 100% acurate to see improvement, I really don't know how the thing of the antibodies work, I guess that if he has a tiny bit then the antibody continues to exist in his system and therefore the effort of being so careful in other days seems to be ruined by a single error, is it like that or am I getting it wrong?

Do any of you contemplate reintroducing ofensive ingredients after a while? how long do you need to be off the ofensive items?

Please excuse my ignorance but what does "msg" stands for?

Anorak, runner beans? we do have jumping beans though ... I may need to get a botanic dictionary

Lunachic, missed your post about the recipe book, I would love to have the reference. I was about to ring Suma, will ask about wholefood stores that stock their products.

MAddyd and Laura032004, can I follow you around while you do your shopping, please???? There should be courses about "Shopping for allergies" with field trips to the supermarkets (I wish!), suppose I should plan to spend a couple of mornings at the supermarkets without DS just to get an idea of what is available.

Laura it didn't help a bit but A LOT thanks for that. The idea of the chart sounds excellent, I should implement something like that. I was thinking of creating a set menu for the week to simplify the things (in the likes of Tuesdays we have oily fish and thursdays chicken, etc.). Have picked up the food menu from the nursery (trying to see if we could do packed lunches that were at least a bit resemblant of those other children in the nursery get, but it may be tricky)

BTW I don't want DS to feel different but don't know how to sort the problem. The image of his little friends having a birthday cake at the nursery while he can't have it, breaks my heart . Do you have to be 100% acurate to see improvement, I really don't know how the thing of the antibodies work, I guess that if he has a tiny bit then the antibody continues to exist in his system and therefore the effort of being so careful in other days seems to be ruined by a single error, is it like that or am I getting it wrong?

Do any of you contemplate reintroducing ofensive ingredients after a while? how long do you need to be off the ofensive items?

Please excuse my ignorance but what does "msg" stands for?

Anorak, runner beans? we do have jumping beans though ... I may need to get a botanic dictionary

msg - monosodium glutamate

Oh! how daft of me... we are already avoiding that

chandra,my ds has food allergies too. pls dont worry,you will find a way to cope. will post more later - baby to entertain!

btw, ds cant have many types of cake - we always have a versio he is ok with so he doest miss out. His preschool had a stash of stuff from me so when soeone brought sweets/cake in, ds would have soething from his own supply and didnt feel he was missing outr

oh gosh, we went to the Dr yesterday and if dd's poo sample comes back clear we are going to have to do this too. i didnt realise so much was involved

good luck chandra,you're getting lots of useful advise,mumsnet is great

Chandra i tried re introducing wheat products but he was up crying all night in pain, explosion of green poo. Havnt tried anything Dairy yet apart from eggs which he is fine with. I waited till he was 19months though and then watched him like a hawk for a reaction. We are back at hosp soon im goingto ask for more tests cos this cooking lark is a right pain.

Tonight he is having minced lamb, with courgettes, carrots, leeks, broccoli and sweet potatoe with an everything free gravy. He is the healthist child i have ever known as his diet is so good.

Thabks Bunny, sending an alternative cake is a great idea.

Fio, hope the tests come back with the best possible outcome, but if they don't we can learn about this together

Thanks MAddy, I have to say that your post gave me lots of hope, about your child being very healthy after such a good diet. I suppose that in all the confusion of sorting the diet I was forgeting that things will get better once we remove the offensive ingredients. Thanks

chandra if there is a liddl near you they stock rye bread that is far cheaper than the health food stores. Doesn't taste good. Can he have oatcakes? Think someone mentioned quinoa already?
You can get digestive enzymes in health food stores and also get him probiotics (milk free obviously, they are harder to find).

There are a few NHS specialists in nutritional medicine. Sorry only know about people in the south, may be able to find one later.

Read the heading again and see oatcakes are out. I've checked the ingredients on the rye bread - looks nothing like normal bread - and that looks OK. Sainsburys have, IMO, the best milk free range so are a good place to look. We've bought gluten and milk free cakes there

This is the professional body for medically trained doctors working in nutritional medicine, don't know if they've give out phone numbers. If none of these are near enough CAT me with your nearest town and I'll see what I can find.

It depends how bad the reaction is whether you have to be totally free or if they can tolerate a little. If its true food allergy any trace (even a smell for some poor souls) can set it off. If its a food intolerance then there is often a threshold level and eating the food infrequently means you stay below the threshold. If the milk problem is lactose and not milk protein very small amounts (like in low fat margarine) may be OK.

BSAENM, P.O. box 7, Knighton, Powys LD & 2WF, U.K.
Telephone: 01547 550380 (+44 1547 550380) 9.30-15.30 M, W, F or [email protected]

I found a reference to several consultants who do private allergy work in the north, but I'd have to pay to get their details. I could get towns so it's possible they are these people, a phone call to the secreatry would tell you.

This consultant at Hull
www.bsaci.org/clinics/detail/r/43/search/all/id/62

this doctor (part time gp ?) at Harrogate
www.bsaci.org/clinics/detail/r/43/search/all/id/39

one of this lot at Newcastle, although most are NHS only at Newcastle

www.bsaci.org/clinics/detail/r/43/search/all/id/70

Discovered this morning that we have to add kiwi fruit to our list of things to avoid

Chandra, just to give you some hope. My dd was a complete allergy nightmare baby. Her milk and soya allergy was fairly obvious (when we tried those formulas when I had to go back to work - she was around 4 months old) so she was on Nutramigen.

Then we started weaning and it couldn't have gone worse. After around 6 months we had had to elimiate peas, chicken, eggs, courgettes and any type of fish (on top of no dairy or soya). I didn't really think she had a true allergy to all of those but it seemed her gut was just not able to tolerate them. Our GP was very supportive and agreed that they were probably not true allergies but we should persist with giving her a balanced diet and try and reintroduce foods as we went along.

Then we had to see another GP for something else who freaked out that I had decided to withdraw food groups without proper allergy testing (she practically accused me of denying dd a proper diet).

So lo and behold we finally saw a paed. By this time, she was able to tolerate most food groups (except the milk, soya and egg) but we got the doc to test for all the above just to be sure. When the results came through, you could almost hear the GP rejoicing that she had proved that I hadn't needed to withdraw all the foods as her blood tests showed her only 'true' allergy was to egg. They hauled her into hospital for a milk challenge which she duly failed. 6 months later we went back for a retest which she passed (by now she was 2). They then did a skin prick test which was negative for everything except egg which made her whole arm go red and the consultant got a bit of a fright (we assured him that this allergy was probably not as bad as it looked as dd had every now and then had a piece of cake and not gone into anaphylactic shock).

Now she's 4 and appears to even be growing out of the egg (fingers crossed). She has the most amazing diet for a child her age and apart from sweetcorn which she has always hated, she absolutely loves all fruit and veg and eats tons of oily fish.

Don't despair. It may be a long road ahead but once his gut has calmed down and matured a bit, things will improve dramatically.

Chandra, I suggest that you get a copy of Sue Dengate's Fed Up (another poster said it was available through Amazon). If you have the energy and patience it takes you right through an exclusion diet and you can thus eliminate naturally occuring food chemicals and check the reactions when you reintroduce. I know 3 people who have done it properly, and the changes in their children are amazing.

Tatt, thank you very much for the information, I have spoken to them already and unfortunately one does not take private appointments, the other one does not receive children under 5 and the last one, my GP couldn't refer me to him but it was more for bureocratic reasons than for lack of will If it's is said that allergy diagnosis is virtually impossible in the North of England I can testify to that!
Sorry to hear about Kiwi being part of your foods to avoid list , is it an allergy or an intolerance? DS is intolerant to it, I have not a clue how that could have happened...

Foxinsocks, thanks for telling me about your experience, some things ring true for us, specially during the worst episodes of eczema, the GP here telling us that it would go on its own by the time he was three, then we toke him to a dermatologist (couldn't get anyone here not even trying to go private ) who solve the problem in four days. When the paediatricain learn that we had to take him to Spain to be seen and get apropiate treatment she referred us to a paediatric dermatologist who was horrified that he was not refered earlier, however...my GP still says, "See, it was going to go on its own" (just try stopping Eucerin for a couple of days and we are back to square one, on its own??? yeah right!)
It's great though, to see there's some light at the end of the tunnel. Thanks

Bobbybob, thanks for the reference, do you know for how long did they try the exclusion diet before reintroducing offensive ingredients?

As an update to my post last week. Dh took DS's file to Spain this week and was reviewed by a paeditarician specialised in digestive problems, he has suggested further tests to corroborate the result we have had but in the mean time advised to avoid particularly any products with milk protein and glutten. He also want to have DS tested to see if he is coeliac (sp?). I'm afraid that the chances we have to have access to these tests in the short term in our current location are practicaly nil, so we plan to spend a couple of weeks abroad to have the tests done and have access to a paediatric allergician.

On a positive note, I'm starting to feel more relaxed about the subject, though it may be after the realisation that if I don't laugh I will be bumping my head against the wall.

chandra butter bean is tipo de frijol blanco o judia blanca

runner bean is judia verde, ejote (mex).

Hope you are doing ok, I have a friend who is a bit of an expert as her son has multiple allergies some including anaphalactic (sp) i will ask her for advice I'm speaking to her tommorrow.

Chandra sorry to hear your story, it is certainly a pain that there are so few professionals in the UK who are actuallly well informed on the whole food allergy/intolerance situation. I would like to recommend another good book: "The Complete Guide to Food Allergies and Intolerance" by Jonathan Brostoff and Linda Gamlyn. As well as explaining (for laypeople) the science behind allergies and what they understand about food intolerances, there is a good section at the back about alternatives to the foods that commonly cause reactions.

Tiger White is a 'milk' made from 'chufa', a cactus, and is available in our local healthfood shop. If yours doesn't supply it, you could ask them to order some in for you. The owners of these shops tend to be quite accommodating in my experience. You can also get quinoa milk which I like because it has a higher protein content. Quinoa flakes or grains can be pretty good for cooking with - use the flakes to make a porridge, and the grains to make something a bit like couscous. Millet can be used in a similar way.

We use Provamel rice milk and if we're lucky we buy the ones with added calcium (purple cartons) but most places only stock the normal ones. I used to use Rice Dream but stopped because I realised they flavoured it with barley malt and also they use the same line to make some cow's milk products and I didn't like the idea of contamination.

Would like to echo what the others have said about making sure your nutriologist is properly qualified.

by the way, my 3yo ds1 is intolerant to soya and was also to cow's milk protein but we've been introducing cow's milk recently and it seems to be going well . I'm still avoiding them both myself, however, due to breastfeeding ds2!!

Oh, the good old ejote, thanks for that Lucy5.

Sam, thank you for the info about Tiger White, I was starting to think I may have misunderstood . Thanks also for the book reference and for letting me know that your DS is outgrowing the intolerance to milk protein, hope I can come back in a few years time and tell you the same

BTW for those whose children have/had intolerance to milk protein, what were the symptoms? the fact that milk scored so high in the test came to us as a surpise, though we may understand now where his eczema may have come from...still, apart of asthma and lots of consitpation I can't really see any obvious signs of the intolerance (or maybe it's just something so obvious that I may have missed it )

Chandra it would normally be described as an intolerance because it causes violent diarrhoea but probably doesn't give an IgE response. Haven't had a specific test but the overall IgE level suggests its not an IgE mediated allergy. Of course there are other forms of allergy but the chance of getting tests for those is so remote it isn't worth asking. Anyway it isn't anphylactic and kiwis aren't hard to avoid.