I"m doing something wrong - can you pick it?

[nicoleh]

Hi everyone,
boy am I glad to have the help and advice I've had from this board.

I seem to be stuck...

DD last had known fructose ingestion 12 days ago (in brined chicken). her stools turned to sludge within a couple of hours, acidosis worsened etc. The acidosis has improved as of a few days ago, however the stools are still terrible.

I think I must still be feeding her (or myself) something wrong?

She eats cornstarch, eggs, fresh Australian wild-caught local fish, organic chicken drumsticks (i'm fairly certain organic cannot be brined without listing on the label), wild-caught cooked fresh Australian prawns without additives and homemade stock (bones and water only). She has been on this diet in the past without any problems, but since the brined chicken incident she's just not come good yet.

I give pure sodium ascorbate powder, pure zinc sulphate (label says only zinc and deionised water, no sweeteners, sugars etc) and a lypazyme (lipase enzyme) to help with her fat digestion. it says it is only lipases plus vegetable cellulose and water. the cellulose content is probably tiny plus that's likely just the capsule which I open and DD doesn't consume.

my other thoughts is that I am eating too much fructose myself (she is breastfeeding).

When we first started having our troubles with her I was still eating fructose and she never improved. the only normal stools that she has had started after I went on an HFI safe diet too. (I have liver damage and probably break fructose down very poorly, thus quite a lot goes into my milk.)

I think I am overdoing the fructose, so here's a few things that I eat and I"d love your advice on which is the most likely culprit:

Puff pastry (plain, unsweetened, white) with spinach and fetta

Garlic and olive sourdough bread. soy is listed in the sourdough culture ingredients, as a very minor ingredient.

ham and bacon from pure salt cure

milk, cheeses (all natural plain cheeses), plain unsweetened, unflavoured yoghurt. eggs, all meats (I don't think any are brined). olive, sesame and macadamia oils.

Crackers containing maize starch, water, sesame seeds, cheese.

tamari soy sauce, shaoxing (rice wine), bok choy (small amounts), chives, cream, rice stick noodles, rice wine vinegar. peeled, boiled and drained starchy potatoes. occasional lettuce (not iceberg), rocket. bamboo shoots, water chestnuts. few drops lime juice per day. plain potato chips/crisps.

If you see anything in there that looks particularly risky please let me know. Of course I have read the ingredients on every package I'm buying and none list sugars or anything added like that.

Thanks a lot,
Nicole

[colormist]

I thought we ruled out fructose being transmitted via breastmilk? I'm not entirely sure though, so if you don't mind restricting your diet...

The following things contain fructose (some in small amounts):
garlic
eggs
rice wine vinegar
rice wine
lettuce

I am not sure about the following:
tamari soy sauce
bok choy

Since your daughter is also eating eggs, maybe try removing those from her diet to see if that helps first before restricting your diet further.

[charlie]

OK, where to start.

I agree with colormist there is alot to go wrong still in what you are feeding, especially as she is so young as their bodies are so much more sensative at that age. So I would cut out alot more and see what happens.

The brined chicken may not have helped as god knows what goes into brining. and it will take a long time to recover from an irritant at her age.

Bok Choy is chinese cabbage and has about 0.9g fructose per 100g
Water chestnuts are from the onion family I have just discovered on googling some of your list and are very high in sucrose 2.8g per 100g.
Bamboo shoots should be Ok.
Spinach is lower in fructose but may still be too much also same with lettuce,
Garlic and olives I would avoid for now too.

I don't think you have an absolute diagnosis on HFI so you may have to look along other lines too.

Eggs, alot of people don't do well on eggs so maybe cut those out or just try the white or just the yolk. Meg isn't great on eggs.

If she does have very severe FM rather that HFI then you do need to look at the wheat content and fructans (garlic and onions come in that family).

So basically you may have to strip back her diet even further and yes yours too if some is sneaking in through the breastmilk.

It is such a trial and error process and they do over-react as babies to the slightest thing - to give you hope this improves when they are around 8 to 10 years old................

[nicoleh]

Thanks Laura,
I've done the research on fructose via breastmilk as best I can and I'm pretty convinced that it does transmit, at least in me. I searched this forum and found a few mothers who had seen their HFI babies react to fructose in their milk (there was an 11 week old fully breastfed baby that already had fructose in her urine, for example). SO I went on the HFI diet and she improved. then I drank 7ml of juice before her evening feed and she got diarrhoea the next morning, which lasted for 3 days. So that was pretty convincing.

Tests have never been performed on mothers who carry the HFI gene so far as I can find. seeing as fructose breakdown is compromised in HFI carriers (as evidenced by the studies showing increased gout from excess uric acid in carriers) then it makes sense to me that the tests of normal mother's milk aren't necessarily reflective of what goes on in us. My lactation consultant agrees.

sorry for the long explanation, but I thought I'd just clarify that for anyone who wonders about it in the future who might go searching this board - that's our experience.

I'm fairly certain that the eggs are ok. the aussie database lists them as fructose free - maybe it's what they are fed in the US? She has had 5 normal stool days since March and on all 5 she had eaten an egg a day for the whole week prior and during, so I'm pretty happy to exclude them from the worry.

the other things you list I will definitely restrict a bit more. I think the tamari is ok - it's the same as Kikkoman soy sauce which I've seen listed here.

Thanks Charlie,
the brined chicken contained onion powder, "vegetable extracts" 5 natural flavours, maltodextrin (probably contaminated) and 3 different herbs. yuk! (and that's not even talking about all the E numbers). I'm horrified and furious!

I have considered that she might still be recovering from that. I'm just beginning to doubt that now as her stools are a bit better then a lot worse and vice versa from day to day so I think there's at least a little exacerbation going on from time to time.

I only ate tiny bits of bok choy but perhaps in combination with the other things it's all too much. THANKS for the info on water chestnuts. I actually forgot to look them up as I thought I'd read on here that they were ok. That could well be what made her worse as I ate them 2 days in a row on the w/end. Garlic I"ll be cutting back on. I thought olives were fructose free?

yes the diagnosis is just presumptive, but as her acidosis, lactate etc worsened straight after that chicken it looks pretty much like it. If it was FM would fructans be an issue in breastmilk seeing they aren't broken down until the large bowel and therefore not likely to be absorbed? she's not eating anything like that herself so hopefully wheat is still ok for me.

In terms of stripping her diet back even further, you think eggs are the only possible problem in that list?

I agree - talk about overreacting!

Thanks a lot for your help both of you. I think those waterchestnuts, garlic, bok choy might be key. Will give that shot anyway - can't stand many more of these nappies!
Nicole

[ukbill]

Tamari sauce contains sugar (in the UK its Kirkoman Soy that is safe (so far as I can tell)
Bok Choy (green parts of the leaves only)
Rice Wine.. feels sticky no idea what ingredients are.
Rice Wine Vinegar I use a tiny amount very occasionally not sure if its safe.
Lime Juice. Depends on variety, most are too sweet for me as are some Lemons
This is advice from a UK point of view some Australian / American products and varieties differ from UK versions.

[nicoleh]

Thanks Bill.
Tamari is definitely only plain fermented soybeans and water. Do you mean added sugar, or are you concerned about the soy itself?

I'm only eating the green bits of the bok choy, but I've even cut that out. I'm aiming for 4 days of completely veg free except my 1 daily spinach and fetta pastry (which she was ok with 2 weeks ago, so hopefully still).

The rice wine ingredients are alcohol, glutinous rice (which is a plain white variety), wheat. It lists zero sugars on the label, but it's only reported to 1 decimal point so I do wonder if there are a few milligrams.

Rice wine vinegar says it is brown rice, water, spirit vinegar starter. So I guess the brown rice could be a problem? I thought it would have been broken down in the vinegar fermentation but I'll skip just in case.

Thanks for the advice. I have to keep the lime juice up because it's the only way I can stomach my cod liver oil which I must take for H as she has major vitamin D deficiency and can't take the CLO herself (doesn't digest it, but it's the first thing for me to try again once her stools are normal - if ever!). I'll try to stick to just 3 drops though. sometimes I'm doing a little more.

On a good note, with these changes I made yesterday thanks to all your advice, she didn't do her early morning foul black liquid poo - or her mid morning foul yellow liquid poo - yet, at least. this is a good sign because when she's well she only does one in the arvo.