Trialling gluten but I want to quit - what do you think?

[Edesanja]

Ok ladies I really need your input here. I tend to want to stop trials when things get rough but I know sometimes you need to stick it out a bit longer till you've got a definite answer.

Things to note: J is 10.5 months old and is  is dairy, soy, egg, gluten free. He gets a sore tummy sometimes with eating certain foods (just fruit so far). His tummy goes rock hard and he just screams and screams until the 'attack' is over - usually 10-30mins. 15mins is about usual. He still doesn't eat a big variety of foods -

Fruits
blueberries, avocados, bananas and watermelon (only had a couple of small pieces on the 3 days in a row that I introduced it) and he can tolerate 1 or 2 small slices of canned peaches
Vegetables
pumpkin, potato, kumara, carrots, peas, corn. I haven't ventured into many green ones because they are known for being gassy (broccoli, cabbage etc)
Others
Rice, oats, chickpeas, gluten free bread

Meat
Chicken, lamb, beef

Here's what's happening - he's not having the 'attacks' like he has in the past when eating fruit (pears, apples etc) but his tummy is still going hard and he's so grumpy it's unbearable!

He's had 1 weetbix for breakfast every day since Saturday (so 6 days). No other gluten.
Sat: fine
Sun: tummy was hard and he was upset at about 9am. It was stinking stinking hot already by that time though and with some water and cuddles he came right and it didn't last too long so I figured he must have just been hot rather than his tummy bothering him. It wasn't the classic attack that we're used to.
Mon: fine. Had watermelon for dinner. Had more than he'd ever had before - probably 5 chunks
Tues: Had about 5 chunks of watermelon. Was grumpy all day. Hard tummy. Was awake from 020-040 an 120-200 in the night - still not an 'attack' like he's had in the past, but clearly uncomfortable. NWs are incredibly rare for us.
Wed: Grumpy and tummy very hard tummy.
Thurs: Grumpy and tummy very hard tummy.

I'm totally kicking myself for giving him watermelon in quantities that he hasn't had before while trialling gluten. But even if the watermelon was a contributing factor, it wouldn't still be affecting him now (usually only that day/night). I think it's probably the gluten and I want to stop and try again in a week or so. Teeth don't seem to be the reason for the grumpiness - he'll let me poke around in his mouth no trouble.

Should I keep going or stop?

Edited to add foods I had forgotten!

[EloysH]

Jenny,  so hard, I know the position you are in.  Your nuturing instinct is screaming to you to stop. But your mind and hindsight are begging you to go on for a few more days just so you know.   How are his poos?  Are they getting better/worse?


I know I keep banging on about it, but the watermelon and canned peaches and blueberries are high sals. Is he on avocado still?  I know you said he tolerated that.  If he didn't, I do wonder if it's a sals reaction.   It sounds as though this might be the highest quantity of high salicyaltes that he has ever had ??
 

But it DOES sound like it is the wheat that is causing the problem here, as you said the sore tummy seems to pass quickly.  But i just question the salicylate quantity, maybe it can cause prelonged intestinal pain if the dosage is higher.   That's why I would repeat the wheat challenge and make sure the sals intake is wuite low during the wheat challenge.

[*Liz*]

Could you stop for a few days and do a wheat trial again but avoid friluit completely on those days? If he has issues with fruits anyway iyswim? I know his range is limited but 3 days like that and you should know for sure if wheat is bothering him.

The other approach you could take is to perhaps try barley first? It is a gluten food but more easily digested than wheat.

Are you using gluten free oats or regular oats??

[Edesanja]

Thanks ladies. So glad for your input!

How are his poos?  Are they getting better/worse?

Consistency is the same. Probably going slightly less (2 or 3 times a day instead of 3 or 4). Considering the amount of stodgy foods and lack of fruit in his diet I'm surprised he's not constipated!

I know I keep banging on about it, but the watermelon and canned peaches and blueberries are high sals. Is he on avocado still?  I know you said he tolerated that.  If he didn't, I do wonder if it's a sals reaction.   It sounds as though this might be the highest quantity of high salicyaltes that he has ever had ??

No I'm fairlycertain (as I can be?!) that it's not sals. I left avocados of the list by accident but until last week when I forgot to buy them, he ate half a day. He eats blueberries at least once a day too. So if anything he's been eating LESS sals. If I stick to the list I gave above then there are no problems at all!
 

But it DOES sound like it is the wheat that is causing the problem here, as you said the sore tummy seems to pass quickly.  

Nope, USUALLY the problem is over relatively quickly (it's horrid at the time but doesn't last too long) but his tummy hasn't gone soft again at all over the past couple of days. He's just not having the screaming fit so maybe it still hurts but is not as intense as it can get when he just screams - just enough to be miserable all day long!

Could you stop for a few days and do a wheat trial again but avoid friluit completely on those days? If he has issues with fruits anyway iyswim? I know his range is limited but 3 days like that and you should know for sure if wheat is bothering him.

It would be tough but I could try this. He's a bit picky at the moment and bananas are definitely getting us through. Bananas are low sals though aren't they? Could we keep them?! I think for those 3 days he'd probably only eat cereal, GF toast with marg an rice all day!

The other approach you could take is to perhaps try barley first? It is a gluten food but more easily digested than wheat.

I chose weetbix to hopefully get a clear answer. I don't even know how to serve barley? I've only ever eaten pearl barley in soups I think.

Are you using gluten free oats or regular oats??

We don't have GF oats here but I haven't given any oats since starting the weetbix. We only did oats about 2 weeks ago and no issues at all

[Edesanja]

Just remembered we did grapes (red) before starting weetbix. 3 days and no problems.

[*Liz*]

I don't know how you would do to do barley either, and I agree about the definitive answer. It is an approach I have heard of rather than something I think I would do myself iyswim? Plus what we all want is our LOs eating stuff the whole family can and does, not a whole bunch of complicated stuff (unless it can't be avoided).

If you are 100% sure bananas in a defined quantity are fine then keep them while you do the trial, but do nothing that presents any further doubt. So back to basics on EVERYTHING apart from the wheat.

About the pickiness - yes - this is a common issue when they haven't been introduced to wide variety of foods, flavours and textures between 7 and 9 mths. They become less receptive from now on. Nothing you can do or could have done differently, of course, but just to be aware of the issue. My DS was very late to wean onto solids due to feeding aversions and reflux, and he has always been very difficult on top of that. He has slowly improved over time, but very very slowly.

I hate to say this but it sounds like he may be able to tolerate wheat in small quantities, but not a whole heap of it  . Which is kind of tricky if you are anything like me and would prefer black and white.

[Edesanja]

No weetbix today but he had an attack just before nap time. He was really OT though so maybe that just pushed him over into not coping anymore!

About the pickiness - yes - this is a common issue when they haven't been introduced to wide variety of foods, flavours and textures between 7 and 9 mths. They become less receptive from now on. Nothing you can do or could have done differently, of course, but just to be aware of the issue. My DS was very late to wean onto solids due to feeding aversions and reflux, and he has always been very difficult on top of that. He has slowly improved over time, but very very slowly.

DD was also very very restricted and went through a picky phase too. When we started being able to liberalise it (and only into more fruit, veggies and meat - still was dairy, soy, gluten, egg free) she started to eat more of things. It was like while she could only eat a few things she figured she might as well just stick to her favourites and that seems to be what J wants to do too.

I think I need help but I'm not sure where to go (I mean even if he could do gluten we've still got the fruit problem!). GP acknowledges he has an irritable bowel but doesn't see that it's related to food in any way so I feel like I'm wasting my time going there. I can't see the hospital paed (who was excellent for DD) without a referal from the GP and I know that's not going to happen. Private paed is very $$$ and he's got a bias that makes me a bit weary. Nutritionist? Everyone will probably think I'm nuts anyway for saying my boy reacts to FRUIT! I am still a bit suspicious of fructose myself.

Groan and moan! I really hoped we would be on the way up by now!

[fireredjewel]

I think you are right to suspect fructose!!!

I'm fructose malabsorbent - and most of the fruits you mentioned that make your DS have an attack are fruits that I have to avoid, especially apple, pear, watermelon, rockmelon. They give me symptoms exactly like your DS. I also can only tolerate VERY small amounts of wheat before I start to feel gross (bloating, diorrhea, flatulance... charming). There are some veges I can't eat - onion (source of all evil!!! boo!), cabbage, artichoke, asparagus etc but I don't think your DS would be on to them yet
 Oats are a good option as they are wheat free.
Drs/ GPs are slow to diagnose this problem - my sis is a dietician and says that it's only very recently that fructose malabsorption has been on the radar (new technology etc), it often gets diagnosed as... IBS!

Basically what it comes down to is managing fruit/wheat intake - might be worth looking into? there's some helpful stuff on the internet. Often the breath tests that they make you do come up 'borderline' fructose mal. (as mine did) but it still means that our bodies can't tolerate it.
Hope your DS feels better! stomach stuff is horrible

[fireredjewel]

just found the stuff my sis & Dr referred me to & diagnosed me with: 

Sue Shepherd is apparently really well known for her research into all the dietary intolerances her in Australia, especially fructose.
http://shepherdworks.com.au/disease-information/fructose-malabsorption
http://shepherdworks.com.au/disease-information/low-fodmap-diet
sacfs.asn.au/download/SueShepherd_sarticle.pdf (detailed research article, with the same table I use to refer to about my diet!)

other stuff... (similar to an info sheet i received from my Dr)
sacfs.asn.au/download/fructosemalabsorptionjune07.pdf

HTH

[Edesanja]

Fireredjewel (sorry not sure of your name) thank you so much for posting! I have read about fructose malabsorption and that's the reason I introduced the fruits that I did knowing they were low fructose. I have found that the info on the net can be quite contradictory - eg grapes in both allowed and avoid categories! . Do you have a source (apart from your sister!) that is reliable?

Are you able to tolerant 'normal' amounts of other fruits?

Was the test you mentioned the hydrogen breath test or a stool reducing test?

[Edesanja]

posted at the same time!

[fireredjewel]

yup it was a hydrogen breath test, but given the borderline results for me, my Dr said I clearly have the symptoms & should avoid those foods, and when I do, I feel great. *shrug*

i think maybe I answered your other question... lol :p Yes some of the info is quite contradictory - i found it is a bit of trial and error. I tried grapes, but they didn't agree, however, cherries do. I can have small amounts of asparagus, on occasion, but not artichoke or eggplant. I can tolerate any kind of berry (lucky me ;-) ) and lots of it, and would probably only eat one or two serves of fruit a day, so i don't max out my fructose allowance for the day, especially if i've eaten wheat in that day!! I think wheat is the biggest problem TBH - I feel the effects almost straight away when I eat it (can't be avoided sometimes - too much hassle when out with DD!) and end up feeling gross for the rest of the day. I've found it helpful to have a low wheat bread, made by country life... don't know if they have it in NZ. you can get it at most supermarkets over here! It tastes pretty normal.

HTH
ali

[Edesanja]

Thursday was the last time I gave J weetbix and by Saturday I had my usually easy going happy boy back. I'm not sure his tummy is as soft as it could be still so will wait a few more days. I'm not sure what I'll do then. Whether I should go for egg or soy, try wheat again just to be sure or add something else that I think might be ok.

Ali, after you eat fruit that doesn't agree or wheat how long is it before you feel the effects and before you're back to normal?

[fireredjewel]

With fruit i can't eat, it's usually within 12 hours that it's made it through my system. the effects are worst about 3-4 hours after i've eaten it (which apparently is the time it takes to travel to the intestines & get processed).
With onion it starts almost straight away (cramping, bloating, yurk!) and then keeps up for 3-4 hours, and by the next day is over.
With wheat, if i have an 'overload' ( i can usually manage a piece of all-wheat bread every couple of days), the bloating start up pretty quickly, and if I eat HEAPS of wheat (which i do sometimes... but sometimes cake is hard to resist when you're pregnant haha) then It can take a day or two to feel normal again.

Personally, I would avoid wheat for a while - i tend to give myself a break from it if i've had some. It might be worth doing a wheat elimination diet for a week or two, making careful note of his behaviour/symptoms etc, then trying it again & noting the change (if there is any & there sounds like there might be!), so when you see the Dr you can give some evidence. I'm not an expert- but wheat is a pretty easy thing to replace (not like gluten!!) in terms of nutrients & filling him up Spelt & rye can cause probs with ppl who can't have wheat as well.
maybe rice porridge...? oat porridge? polenta/maize, quinoa, amaranth (this is a bit bitter though), puffed corn cereal (requires lots of chewing!). Cheerios are a mix of corn, rice, wheat, oats and I have them for brekky every morning, but again, they might need more teeth than your DS has

hope you get some answers... somehow. It's frustrating trying to figure it out but totally worth it in the end

[Edesanja]

I've been waiting and waiting for J to get back to his normal baseline after the weetbix trial and it just hasn't been happening. Today I went out to buy more rice bubbles from a bulk bin place since we'd run out and when I read the ingredients they have MALT in them! I can't believe that I missed that last time - I thought I'd hit the jackpot last time when I finally found cereal that was GF and so cheap, but then it was too good to be true!! Feel like a bit of an idiot but then as long as he goes back to his baseline when I stop them, then at least that's another gluten trial done and dusted for now. I was hoping he's pass other gluten though 

[*Liz*]

Oh how annoying 

Now just to wait and see if that was the issue