I'm Confused!

[mairin]

My daughter has been gluten-free for about 3 weeks since positive biopsy (just turned 9). She never had any GI symptoms and I'm not sure if behavior issues are gluten related or not.

I'm confused on a whole bunch of things now, just when I thought I was doing okay figuring this gluten-free stuff out. Celiacs is so much more overwhelming than I anticipated -- the more you learn, the less you realize that you know.

1. Is reading the ingredients NOT enough to determine if gluten-free? I just obtained a list of "safe" manufacturers (ie those who disclose any gluten) from another forum here. Does that mean I should be calling/emailing all other manufacturers to ensure that artifical/natural flavors or other ingredients are gluten-free? What about manufacturing lines, does that matter too?

2. Cross contamination - we are not a gluten-free house. Most dinners are totally gluten-free except pasta. I prepare my DD's food (lunch/breakfast) on one side of the stove, ours on the other, don't mix spoons, separate butter, etc. But I'm a bit confused on cleaning up such as wiping the countertop. Do I use two separate cloths, and keep one sink gluten-free? I try to put all items in the dishwasher so that they are sterilized with very hot water. I use a plastic cutting board for gluten-free foods, but am still using wooden spoons (that go in the dishwasher). We have a separate shelf in the fridge, plus two other gluten-free shelves.

3. What are the differences in labeling in Canada and US? I'm in Calgary, Alberta and I'm not sure when reading here what really applies to me as a Canadian re listing ingredients.

I'm sure that I am accidently glutening my DD because I'm still confused on too many issues. My daughter was totally excited to have a Wendy's Frosty -- we call them malts and she thinks it is so funny she can have a "malt" (she knows about the big gluten ingredients to avoid) but can't have Kellogg's Rice Krispies. She has a very good attitude about it right now and is extremely cooperative (but does refuse to eat any gluten-free food we purchase that she doesn't like, which has been quite a bit!)

Thank you for any assistance.

[gfp]

My daughter has been gluten-free for about 3 weeks since positive biopsy (just turned 9). She never had any GI symptoms and I'm not sure if behavior issues are gluten related or not.

The only way you will find out is following the diet.....

I'm confused on a whole bunch of things now, just when I thought I was doing okay figuring this gluten-free stuff out. Celiacs is so much more overwhelming than I anticipated -- the more you learn, the less you realize that you know.

We all started out that way.... and that includes some of the very very knowledgeable people who will answer your post....

Before I go on.... what I have to say is that there is no such thing as 100% risk free (if you don't own your own farm...)

Its simply not possible.... so everyone has to deterimine their own risks.....

However.... and this bit is really really important....

Until your daughter actually manages to get completely gluten-free for a significant* time its very very unlikely she will be able to work out what reaction came from where.... (*significant varies but its somewhere over a month)

One thing that never stops being confusing is the ability for symptoms to show up after lying dormant for weeks...

For your daughter its doubly confusing if she either thinks she has no GI symptoms or actually has no GI symptoms....

I might sound stupid to say the thinks she has no symptoms.... and this is the problem... nearly all of us that go 100% gluten-free for a while actually discover symptoms we never realised we had... its the nature of celiac disease that it builds up so gradually over years and even though a single event can "trigger" a certain set of symptoms we then discover things we thought were just normal ... GI symptoms get a special mention because its not exactly info that's discussed...

We don't get into school work monday AM and ask "hey how were your bowel movements this weekend?" We rarely ask friends "hey do you sometimes just really really loose control and poop yourself while running for the loo?" ....

When I was at home I used to be SO embarassed I used to hide my pants and wash them then hide them under the bed until try until dry so I ecould put them in the wash....

1. Is reading the ingredients NOT enough to determine if gluten-free? I just obtained a list of "safe" manufacturers (ie those who disclose any gluten) from another forum here. Does that mean I should be calling/emailing all other manufacturers to ensure that artifical/natural flavors or other ingredients are gluten-free? What about manufacturing lines, does that matter too?

This is your call.... I hate adding to your confusion from day 1.... but... you should realise and decide for yourself.

I'm going to give you the most extreme example.... because like I say there are no absolutes so giving you one end you can objectively look inbetween???

One company that say's it will "never knowingly hide gluten" is Kraft... Kraft are owned by Phillip Morris tobacco although the parent company recently changed its name its the same company... they just kept the name for tobacco products and created a new umbrella....

Im not going to put links because you (and your daughter) should check this yourself and not take some random guy on the internet's word for it....

google "who owns kraft" for instance... it would need to be an absolutely enormous haux for someone to have set up ther parent company corporate website ...maintain it and not get sued ....

OK so the same company stood in front of grand juries, senatorial commisions and stated catergorically "The is no linbk between tobacco smoking and lung cancer"

Next... read the wording.... I underlined the one I think is important. Ask someone you know with legal training what recourse you would have if you bought a product which you then found out (though how you would other than being ill is not so simple) contained gluten?

The company are pretty likely to just say... oh our manufacturer didn't tell us. It doesn't mean they asked nor required it...

Indeed it would be perfectly legal I guess to ask the supplier to NOT tell them.... and even if... if if they knew... what legal recourse do you actually have?

2. Cross contamination - we are not a gluten-free house. Most dinners are totally gluten-free except pasta. I prepare my DD's food (lunch/breakfast) on one side of the stove, ours on the other, don't mix spoons, separate butter, etc. But I'm a bit confused on cleaning up such as wiping the countertop. Do I use two separate cloths, and keep one sink gluten-free? I try to put all items in the dishwasher so that they are sterilized with very hot water. I use a plastic cutting board for gluten-free foods, but am still using wooden spoons (that go in the dishwasher). We have a separate shelf in the fridge, plus two other gluten-free shelves.

Gluten isn't sterilized.... its not alive, it can't be killed and made harmless short of incineration of chemically reducing it...

Seperate dishcloths is a good start... but if you bake using normal flour then gluten will get all around the kitchen... As a example a can of tomatoes with no gluten in are not gluten free when they are in the same cupboard as flour... the risk of CC is present... just reaching for the can with a tiny amount of flour on the outside and your hands are now contaminated... the onion you go on to chop etc. then all become contaminated...

Sorry... I know this sounds extreme....

3. What are the differences in labeling in Canada and US? I'm in Calgary, Alberta and I'm not sure when reading here what really applies to me as a Canadian re listing ingredients.

I'll leave that to Canadians.... we have plenty

I'm sure that I am accidently glutening my DD because I'm still confused on too many issues. My daughter was totally excited to have a Wendy's Frosty -- we call them malts and she thinks it is so funny she can have a "malt" (she knows about the big gluten ingredients to avoid) but can't have Kellogg's Rice Krispies. She has a very good attitude about it right now and is extremely cooperative (but does refuse to eat any gluten-free food we purchase that she doesn't like, which has been quite a bit!)

I think your one statement shows you are ready.... I read the post first which is why I just "gave it to you" ....

Your already past the midpoint hurdle... which is accepting that gluten-free doesn't mean wiping the crumbs of a burger or picking out the croutons...

It took me probably nearly a year to finally accept what the docotrs and nutritionist said was just bull ...

We so want to beleive its so easy.... and the majority of the medical profession really are clueless... its almost amazing you managed to get a diagnosis so early...

Its not that MD's want to hurt us... they just never had to consider it personally.... just to illustrate this.. take something innocuous sounding like soy sauce... probably 90% of the general public presume its made from soy.. its seems so obvious yet nearly all commerical non specialist stuff is 50% wheat...

BUT.... this isn't the real problem... its relatively easy to buy gluten-free soy sauce.... but its very easy to forget that any food with soy sauce in it therefore contains "hidden gluten"....

However.... this isn't the end... when you consider CC that means all these "products" are capable of CC....

So if for instance your at a resto... they might be really careful about bread/pasta.... but not realise that the soy sauce contains gluten and use a spoon etc. to stir something or the same cloth they wiped up some spilled soy sauce with....

The same goes at home... its the less obvious things that tend to cause CC because its easier to be REALLY careful with the obvious...

flour is an exception.... its obviously gluten but its nature just transfers it about... even vacuuming is going to fill the air with it to be breathed in and anything solid we breath in end up in our GI tract...

This might sound extreme.... if you work in an office with a laser printer or photocopier ask the tech.... if you vacuum up the spilled powder with a normal vacuum cleaner a significant amount just comes out through the exhaust... its the same principal..

[Nancym]

Another thing to think about is that if your daughter is a celiac, she probably got at least one gene from at least one of her parents, perhaps both of you. Being celiac is something that makes kids (and adults) feel different and awkward and unable to be part of the group. I think it is very good on a lot of levels for the whole family to adopt the diet. Makes the diagnosed celiac feel more "normal", reduces the opportunity for CC, might even make life better for the non-diagnosed celiac, or gluten sensitive, makes less work for the meal-makers. You could even continue to eat gluten outside the home (for the non-sensitive).

Anyway, that's my .02, I realize it might not be something you're ready to consider yet but at some point down the line, it might make sense.