could there be a problem with oats or barley???

[jesie]

DS is currently on a Dairy, egg and wheat free diet.

He has had for months now gluten free oats for breakfast.

I thought all was fine.

He generally poos about 4/5 times a day. 2/3 am 1 pm 1 after tea.
I put all the poos down to his diet which consists of lots of fruit and veg.

Now, here's the twist. Started him on rice krispies on Thursday morning for a change.
He has now gone down to 1 poo a day!

So is he now clogged up from the rice krispies (which contain barley) or was it the oats making him poo?

What would/could barley do to him? He's never had it before?

Today he is grumpy and very cuddly. And is still yet to poo. He's had some calpol but still grumpy. But he is also red checked so his mood and behaviour could be down to teeth.

Was thinking of trying him back on the oats to see what happens tomorrow.

It's just so difficult at this age! 

[*Liz*]

Probably the barley - that is a gluten containing food.

Uncontaminated oats do not contain gluten, although the protein is similar. Contamination occurs during the milling process as they mill oats in the same building as they mill the flour.

Although the rice itself can be very constipating so it may actually be that really.

I would doubt the oats if it has been months though.

[jesie]

Grrr I never knew barley contained gluten!

[*Liz*]

Gluten foods are
Barley
Bulgar wheat
couscous
Durum wheat
Einkorn
Emmer
Kamut
Pearl barley
Rye
Semolina
Slept
Triticale
Wheat (obviously!)

There is something called barley malt extract that some people are able to tolerate, and others can't. It is used as a flavouring.

[jesie]

Thanks for that!

Dietitian said we had to test gluten. So I'm thinking we tested and failed?

[*Liz*]

It is hard to say really as constipation is not a conclusive symptom. It is not that common in coeliac's for example, but obviously could mean a babies tummy isn't ready yet iyswim?

I think I would get your LO back to baseline and stable for a few weeks and then try again with something a bit more conclusive.

What did your dietician suggest for the gluten trial?

Is your LO allergic or intolerant of wheat? Did you have scratch tests?

[jesie]

No tests, they won't do tests, just going by his reactions which is why its so hard to actually know.

It only effects his insides, mood and behaviour.  So i'm guessing intolerant, as dairy effects everything including skin and breathing etc.

She never said what to test him on. Just something shop bought and highly processed. 

[jesie]

Hiya ladies, just wanted to repeat my thanks for the help and advice but also update you.

We saw the pead today, he said that he deffenatly thinks there is still a problem with gluten due to the reaction to the rice krispies. He said he thinks its more an intolerance than celiacs as the reaction happened quickly.

He is prescribing us flour etc

Thanks again ladies

[*Liz*]

That is interesting thanks 

I have realised DD is reacting to gluten through my diet - it gives her bottom end wind and long NWings as she can't settle. And constipation.

Also interesting that he was happy to prescribe flour etc without a formal coeliac diagnosis. I didn't realise they did that.

Is he doing blood tests or anything??

[jesie]

No, we've had no tests for anything, just my word! Which annoys me really cos I want the testing to know the severity of each problem.  It's all just guess work on my behalf. But then I guess its good they are listening to me, but still.

Having said that. It has taken 3 failed trials and 3 lots of intensive questionings and all my records of observations (i record everything) to get where we are today.

My pead isn't too keen on testing as where G hasn't had the problem foods for such a long time he wouldn't get a true result.

[Buntybear]

Whereabouts are you Hun? It is strange they won't do scratch tests when you think he has a milk allergy. The tests have made a world of difference to us. They can't test for gluten though.

[jesie]

I'm south west England.

Don't think they tested for dairy cos his reactions are so clear, so at the mo we know it is severe. But i will push for one next time they say to test him, but it won't be for another year as we've just been given prescriptions for his milk until Jan 2012

[*Liz*]

It is true that you can't do tests for coeliac disease unless they have been exposed to gluten for a certain period of time before the blood test. The other test for coeliac's is done via an endoscope looking for duodenal atrophy - but again that reverses on a gluten free diet anyway so I doubt there would be any point.

So that leaves us with following symptoms and signs in our LOs - which is a big responsibility for a Mama isn't it?

[jesie]

It is lots of pressure and understandable as to why so many go undetected. It's fair enough if there are no tests, I guess they are trying, I know they aren't going to just magic one up, but a greater support network is deffenatly needed, along with advice on how to spot problems etc. Some people are able to identify that this isn't normal, others can't.
And I have had a fight to get where I am today.

[Jimbob]

Our GP was happy to prescribe gluten free products due to reactions James was having. James tested IGE positive to wheat ad was not thought to be coeliac.

[Buntybear]

Jesie, you are so right. When Olly was 3 weeks old he was vomiting after formula top ups. We were admitted into hospital and they did LOADS of tests. At NO point did they mention a milk allergy or intolerance. It was only when DH googled vomiting after formula milk it became clear that was what it was. We then did the testing ourselves and thought he was MPI. It was only 2 weeks ago we found out it was actaully an allergy and we are now testing soy assuming now he wasn't MSPI as originally feared. Same with reflux. I hear that a lot of reflux can be caused by MPI but have never heard of a GP recomending a dairy free diet - just meds.

So are you sure of the wheat and egg allergies/intolerances?

[*Liz*]

And I have had a fight to get where I am today.

I did as well with DS (my first LO), much less so with DD because I had already proved myself with DS. And that is sad as well really.

((hugs)) to you.

[jesie]

Oooh don't get me started on G's fight for the dairy it was horrendous!

Yes we are sure, (well as sure as we can be cos I did not spend 7 years at uni, although at times I KNOW I know more!) purely cos of his reactions. Gluten is an intolerance. Egg is an allergy.
Milk is a tricky one. He could be both allergic and intolerant they think. Def allergic. But we are staying well clear of that for now anyway.

We are testing for egg in march/april to see if its gone now

G suffered with reflux too, he def had silent reflux which could produce normal reflux too. But luckily when we weaned it practically went.

And ashtma too my poor lil' man  

[jesie]

Liz it really makes me angry, and one point I just shut down and blamed myself, thought I was going crazy. They made me feel like I had munchousen by proxy (sorry bad sp) it was a very hard time

[*Liz*]

((hugs)) and more ((hugs))  . I have often felt the same and even doubt myself with DD still sometimes.

I was treated just the same. I got the OTT medical mother approach, and it took until J was losing weight and below the centiles for a paed referral.

BTW - you mentioned gluten free porridge - what type are you using and where are you getting it from?? I need some for DD.

[jesie]

Thanks. Wish I knew about this site earlier as it prob would of made it a lot easier to cope with. Luckily I had a couple a fab friends to support me.

Porridge: Nairns? I think that's how you spell it. I get it from the free from isle in Tesco. The porridge is red on the top and bottom of the box. It's £2.99 and there is also musli too, which is green at top and bottom if box. It's not cheap for the amount you get, but G only has 2 table spoons a day, so it lasts a while.

[*Liz*]

Ta  . I will go to Tescos  .