I think whole family needs an elimination diet - where do I start?

[essexlemon]

I have a thread running over on the sleep boards but I'm starting to take my head out from under the sand and realise that we need to track down any dietary problems as things are more complex than just an ability to settle indepenantly.

DS1 (3yrs) has some medical issues going on which we are waiting to see a paediatric specialist to try to get a diagnosis for.  He has suspected vasculitis and we have been adament that he has issues with his stomach for some time.  He had silent reflux as a baby (or, at least, Omeprazole and Domperidone helped massively - he literally did not sleep unless held and walked up and down).  Looking back, his symptoms worsened considerably after starting solids.  We are having ongoing behavioural problems which I have always put down to illness as they used to improve after a course of antibiotics with ear infections but with the last infection the behaviour stayed.  He was always a very lively but well behaved boy, astute and observant and had reasonably good impulse control at a young age but is now a complete lunatic most of the time.

DS2 (8 months, BFing) is generally a cheerful, smiley bub but keeps going through very unsettled periods and since starting solids has been getting progressively but very gradually worse until he's ended up screaming for most of each night.

DH has pernicious anaemia which also affects his tollerance to some foods but it is always obvious fairly soon after eating an offending food wheras my boys don't tend to 'react' quickly.

So I'm thinking that perhaps we need to go on an ED as a family but have no idea where to start.  I'm thinking maybe we should cut dairy or wheat to start but not sure which to do first (plus DS1 is OBSESSED with milk so this is going to be tough.  Also after advice on substitutes and snack ideas if we do this.

Must go DS2 is shouting for a feed.

[Buntybear]

Oh dear you do sound you all all going through it at the moment 

Have you tried keeping a food diary to see if there are any triggers? It is hard to say what to eliminate when I don't know what your diets are like! Do you eat much dairy and wheat as a family?

I guess my gut instinct would be to try milk first. Esp with DS2.

What is your gut instinct on it all?

x

[essexlemon]

I was keeping a food diary when he was a lot smaller (DS2 that is) but I could never put my finger on what was upsetting him - I thought it was just something making him windy.  With DS1 it was the same.  I thought he was windy so I cut out pretty much all veg except peas, carrots and potatoes and he was still horrendous - I didn't know at that stage that milk proteins and things can make it through to the milk.  I complained enough times about him being in pain to the Dr and HV but there you go.

We do have a lot of wheat (sandwiches most lunchtimes, quite a few wheat based cereals in the cupboard for breakfast).  We also have a fair amount of dairy, cheese, yogurts, I'm a chocoholic too.  There are also a huge number of bananas consumed in our house every day.

With DS2, cutting back to just the bare minimum of solids seems to have helped massively but I don't think it has completely fixed the problem.  I don't *think* dairy causes him problems when I eat it but I am always second guessing myself.  He has definately got worse lately and I have been making a concerted effort to eat more green leafy stuff as I've been told my iron levels are extremely low (not clinically anaemic, but not far off) so I'm wondering if maybe he is just super sensitive to anything 'windy'.  I do think I'm going to have to keep my diet very bland while we introduce new foods to him so I'm not blaming the new food for screwing him up when it's something I've eaten.  At the moment I'm frightened to eat anything as pretty much everything seems like it could potentially be a problem.

I'm tempted to try cutting dairy for me but wheat for DS1.  Do you think that's too complicated?  I'm guessing though that if I buy 'fake' yogurts and stuff to fill the gap that I could complicate things by introducing more soy?

He definately struggles with butternut squash, so I don't know if that would make him likely to have trouble with other nightshades.  The only one food that he did seem reasonably ok with, or at least he didn't have a horrendous patch when he was eating it, was spaghetti bolognase with a little bit of pasta blitzed in.

We both think that DS1 has been a little bit better over the past few days (and stools look more 'normal' sorry tmi) and he hasn't been eating sandwiches but has had wheat in other forms like white pasta - is it possible to be sensitive to something only in it's less refined forms - like, would it be possible to be intollerant to granary bread but be fine with more processed white bread?

I'm nervous about cutting out milk for DS1 as he tends to go on milk and banana marches where he will constantly demand them for a few days and then go back to normal.  He tends to have a very bloated tummy for a bit as well.  DH feels that he is asking for milk because it is soothing, especially if there is any ulceration in his tummy.

I'm really not sure.  My parents are staying this week so I probably picked a bad time to start posting on this as my Mum usually helps out doing most of the cooking when they are here so it would be awkward to make major changes (especially as she has bought a load of food with her - bless her).

Did you keep a food diary for your LO?  How did you lay everything out so you could see the links or did you see reactions very quickly after he ate something?

[Buntybear]

Did you keep a food diary for your LO?  How did you lay everything out so you could see the links or did you see reactions very quickly after he ate something?

With Olly he has full blown allergies and so they showed up with in hours of him consuming them. With the fruit that was more complicated and suggested to me by somone on here in fact!

RE your family - wow, what a lot to think about. I guess it would make your life easier if everyone had the same foods. Wheat is fairly easy to substitute TBH for the whole family. Bread is the only tricky one but there are alternatives available.

I think the most common culprit in LOs is dairy. A combination of a wheat and dairy ED is tricky but can be done with lots of planning and shopping!

[essexlemon]

Ooh, planning I am the most disorganised person I know!

[Buntybear]

Have you got good supermarkets near you? They contain a great range of free from foods these days; pasta, biscuits, soy cream and yoghurts even things like dairy free pesto!

[my3girlsjde]

Hi there hun and hugs

We've been on a similar road with our youngest and a full ED for both dairy and wheat CAN be done. I would go with dairy first though as the proteins are gone from the body by ten days where it truly can take a full six weeks for wheat. However with wheat, we did notice an amazing change with E within the first week. Six weeks later the change was even more profound and the results were amazing.

It's so hard when this stuff doesn't show up on regular allergy testing. We've knows something was up with E (and we're wondering about our big girls also) and things seem to build up which also makes it hard. A piece of bread or a banana might not bother her the first day but the second day she might be a bit grumpy and the third day we have a full blown reaction. It has been such a long road and I commend you for pushing for a diagnoses. It may take some time though. E tested negative for all common allergens even though we see reactions within half an hour for some foods. The allergist feels that it's "non-IgE mediated food reactions". They're hard to find and usually only defined by elimination diets. So I think you're heading in the right direction.

I agree to keep a food journal and go with only the 'safe' foods for a few days and add one new food at a time and give it a full five days for each food.

One thing I've learned is that a bit of this food and a bit of that food can all add up in E's system so even sneaking in little bits here and there while they don't cause an immediate reaction do make her more sensitive overall and she recently reacted to blueberries of all things. Try to stick to it and log everything down. I know it's hard but I did find a diary app for my phone that I was able to track everything E ate and reactions.

There are a lot of subsitutions out there. E drinks coconut milk (I think she finds this soothing too), eats pasta made from rice, and I use oat flour to bake with. Most large chains have gluten free and dairy free sections because this is becoming very common.

When I talk to people about what's going on with E, I use the term allergies because that's what most people understand. It's easier that way, though very different from what's going on in her body.

Take a peek at this: http://en.wikipedia.org/wiki/Food_allergy The third one of the non IgE is what is going on with us and I think so many other families.

I hope that helps. PM me if you need to chat or need some support but definitely keep posting here.

Hugs hun

[essexlemon]

Thanks Vicki.

The doc said yesterday that an intollerance is unlikely as he has been constipated until recently and intollerance tends to present with loose stools. Is that your experience? I know the textbooks can be way off so if anyone has experience of an intollerance without loose stools it would be good to know.

Her feeling is that it is classic reflux. I tried the Gaviscon last night and it seemed to help marginally in the evening but he was awake at 10.30 and the rest of the night was hell. I'm guessing that as he seems reasonably cheerful when he is up and about that it is more likely to be reflux but my gut is telling me its somethi g else (but maybe only because DS1 has been such a complicated little lamb).

[deb]

Loose stools are common with intolerances but that's not the only way they present - any gut/tummy/intestinal "differences" might also be related, so constipation *can* be as well.

I would be very leery of introducing soy as a dairy replacement; the proteins of soy and milk are apparently similar enough that people who have a problem with one often have problems with the other. My family can only do trace soy; J used to have soy milk before I knew better and WOW, some major poop issues ensued.

We can now have yogurt (cultured dairy seems to be OK for us now, as the culturing apparently "pre-digests" some of the protein and sugar to make it easier for us to handle), but otherwise we avoid dairy and most common substitutions like soy milk. I make a wicked coconut milk breakfast smoothie, and Natalie does drink some rice milk (I try to limit quantities after finding out that rice has naturally-occurring arsenic in it - it draws it from the soil it grows in, apparently), but mostly we drink water, not even juice (fructose is another problem for us). I'm allergic to almond milk, so I just don't bother getting it because I'll have some of the rice milk once in a while to thin a smoothie.

Since you mentioned behavior and antibiotics, I always attach this for reading up on gut health and behavior: http://www.diannecraft.org/article-001.htm. Are you all on probiotics? Definitely recommend!

And as for wheat, wow, on the one day a week my kids still get PBJ's (peanut butter and jelly sandwiches) for their school lunches, I can see a behavior and mood difference for sure. School year's almost over, and starting this summer when there's more time (kids home to help, plus I'm a teacher so will be off myself) I want to do some coconut flour bread and tortillas to use for stuff like that. There are a LOT of gluten-free recipes out there, but as I'm allergic to almond flour, which is a staple of many of those recipes, we just don't bother unless it's coconut flour. I have had to relax on my Paleo thing lately as an injury has sidelined my physically, so I'm relying on stuff I wouldn't normally feed my kids the last couple weeks in particular.

One more link to check out from a blog I follow, Paleo Parents. Here's their Before and After story, which talks about the changes the whole family went through. On days when I wonder why the HELL I undertook such a big change (which I don't regret unless I let it all pile up LOL), this makes good inspirational reading: http://paleoparents.com/our-before-after-story/

[my3girlsjde]

he has been constipated until recently and intollerance tends to present with loose stools.

My big girls constipate with everything that doesn't agree with them. They have had diarrhea a whopping six times (combined) in four years yet they were mpi. They have ongoing issues with constipation that our allergist has suggested an intolerance to 'something' as they're not his patients and he can't check them without a referral.

Granted intolerances are more likely to give diarrhea, constipation can also happen though many Dr's feel otherwise. If you're thinking something is causing the constipation, I would remove it for two weeks and see where you're at.

[essexlemon]

Cutting out most of his solids (he's just on pear, prune and sweet potato) seems to have sorted out the constipation for now.

He's tolerating the Gaviscon reasonably well but still has a way to go in terms of being settled and waking up uncomfortable in the night.  I've tried giving him half a dose after breakfast as his poos are still ok with having the Gaviscon through the night (what a faff btw, mixing that up in the dark) and he seemed happier this morning although still OT he wasn't screaming for a nap (we're having the loft insulated so getting the the bedroom wasn't possible).

I'm sort of leaning towards thinking that it is *just* reflux at the moment and him not really being ready to start solids even at 6 months but since DS1 has so much tummy trouble I think I will still do the ED (against my Mum's advice - "just get the medication - it worked with Henry") because I think it will be simpler to just cut it out of my diet while I am feeding him, than having to put him on an ED further down the line once he's used to eating all the stuff he'd have to cut out.  Does that make sense or am I just making a rod for my own back?

I've ordered a load of 'free from' stuff for this week (I cheat and get Tesco to deliver).  I'm thinking that if I see an improvement I will start buying the proper oat flour and baking stuff like bread myself (the wheat free stuff is sooooo expensive - as if you didn't already know that) but for now I just need to get one of these boys sleeping before I can undertake any cooking projects - even little ones like crispy cakes are on the back burner).

I saw somewhere that I should be switching to organic meat to avoid eating anything that has been fed on wheat etc.  Do I really need to go that far or will the diet still work to a lesser extent if I still buy muck-fed-meat?  I try to buy higher welfare but can't afford to stretch to organic and with me not being able to eat anything green (it doubles William over) I think I need some meat in my diet for the iron.

I don't know whether to hope that an ED sorts him out (yay for sleep) or that it doesn't (I don't really want him to have to avoid yummy things).

Sorry - I'm aware that I've started rambling.  If he were wheat or dairy intolerant would that cause him to struggle with foods he would otherwise be ok with?  It seems like every time I've added anything, however gentle, it seems to upset his system.

[Buntybear]

I think I will still do the ED (against my Mum's advice - "just get the medication - it worked with Henry") because I think it will be simpler to just cut it out of my diet while I am feeding him, than having to put him on an ED further down the line once he's used to eating all the stuff he'd have to cut out.  Does that make sense or am I just making a rod for my own back?

I think I would have to agree with you there. Very hard to explain to a 2 year old why suddently they can't anymore have the cakes/biscuits that his friends are able to eat 

Re the meat - this is not something that we practise and even though Olly has a proper allergy he is OK with meat.

If he were wheat or dairy intolerant would that cause him to struggle with foods he would otherwise be ok with?  It seems like every time I've added anything, however gentle, it seems to upset his system.

If his gut is already inflamed/sore etc by reacting to an allergen or something that he is intolerant too then I imagine that it could react to other things. I am no medical expert just thinking in a literal sense. Like if you get lemon juice in a cut! (a bit of an extreme but hopefully you know what I mean ).

Plus some LOs do just take a bit of time for their digestive systems to get used to having solid food go through it. Olly wasn't ready till 6 months and then we kept him off certain foods till he was nearer one as they constipated him.

[chicagomom]

my son is starting day 4 of the FODMAPs elimination diet.  basically he contracted a really bad GI bug 3 months ago that damaged his gut enough that he is lactose/soy/gluten intolerant, among other things.  also, he cannot have certain fruits and seasonings as they are hard to digest, and the fruits he can have he can only have 1/4 cup 3x a day max.  the FODMAPs diet is quite extreme but within 3 hours of starting it my DS was back to his old, happy self (he was really suffering before)

a true ED is very difficult to follow, and you really need professional guidance to do it right (at least at first).  reading labels is the trickiest thing about it.  honestly, i would not put my children on an ED unless i was working closely with a dietary professional who is knowledgable about the whys and hows of an ED.  FWIW, pediatricians are just not that knowledgeable about these sorts of things and you really should see either an allergist or nutritionist, if at all possible.

i hope that helps.  i'm so sorry, dealing with food intolerance is very hard and tricky to diagnose.