questions about going gluten-free

[dollyanna]

For those of you who are GF, not because you have celiac but because you or your children are gluten sensitive - how strict are you about potential cross-contamination?

Like, if it's a gluten-free food made in the same facility as a non-GF food, would you eat it?

I'm feeling a little challenged by the fact that I am allergic to tree nuts, and the GF flour (Bob's Red Mill) I can find readily available seems to be made in the same place as the nut flours... I've got an email in to see if it shares equipment or not, but it seems like any kind of "flour" would tend to scatter all over the place...

Everything that I'm reading about celiac is saying that you need to have a GF kitchen and never have anything from the same factory, but I don't believe I have celiac - had some tests a few years ago - so I'm eliminating gluten to see if I have an intolerance or something. Do I need to be as strict?

Also, how long should I stick to the GF thing before deciding if it is helping me or not? And how do I prove it? Eat a big ole piece of bread & see what happens?

Thanks for your input!

[lil_miss_understood]

every person is different. although there are people w/ CD who don't react to 20 ppm of gluten (the standard for being labeled gf), there are others who react to as little as 3 ppm... i think that's true for those of us with non-CD GI as well. (not saying we don't have CD- we've not been tested; as my allergist put it: what's the point? the treatment's the same.)

[luminesce]

I've been wondering similar things. Because of all the problems DS has had, we've been GF (and egg, dairy, corn, soy, and mostly nightshade free) for about 3 weeks now. According to an IgG test, my DH is wheat and gluten intolerant too (though he doesn't quite believe it yet.) As far as I know I'm not gluten intolerant but following the same diet as my son because we're still nursing. We're waiting on test results from Enterolab about gluten (for all of us) so our long term future diet is still in question. If it turns out that DS is celiac/long term gluten intolerant, we'll likely move to a completely GF kitchen. We're headed that way now. Except for what DH is still eating, I cleaned out most all of the wheat/gluten from our cabinets (mom got a nice big box in the mail ) to make room for GF stuff.

Personally, I'm having a little bit of a hard time adjusting to the diet. I think I *might* be able to adjust to being GF long-term but boy am I really craving nightshades (and some chocolate) right now!

ETA: We've been a little hesitant to eat things made in the same facility with gluten because DS seemed to react (fairly mildly) to something lately that we can't pinpoint. We first thought it might be our olive oil but it solidified in the fridge so I don't think it is adulterated. We're thinking now it may have been Rice Dream, the other product we increased the use of at the same time. DS also may have reacted a little to the Arrowhead Millet Puffs (which technically are not labeled GF).

[kjbrown92]

DS, DD2, and I area gluten intolerant. I do not have a gluten-free kitchen. But we are very strict about cross contamination: sponges, utensils, etc. I rarely buy things that are "processed in a facility..." because we rarely buy processed foods with all of the things we are avoiding.

We are actually much more careful about cross contamination than a friend of mine who has two kids with celiac. They don't have a gluten-free kitchen, and use the same toaster for gluten/non-gluten bread, etc.

[lil_miss_understood]

Is chocolate a problem itself, serenitii? If not, you could find some dairy free unsweetened chocolate and make my chocolate pudding. It seems to be easier to find unsweetened dairy free chocolate than sweetened.

Originally Posted by kjbrown92

DS, DD2, and I area gluten intolerant. I do not have a gluten-free kitchen. But we are very strict about cross contamination: sponges, utensils, etc. I rarely buy things that are "processed in a facility..." because we rarely buy processed foods with all of the things we are avoiding.

We are actually much more careful about cross contamination than a friend of mine who has two kids with celiac. They don't have a gluten-free kitchen, and use the same toaster for gluten/non-gluten bread, etc.

There are special toaster bag things you can get which are reusable and intended to prevent cc. Are you sure they don't use those? I can't even imagine being that lax..
And we very rarely buy things "processed in a facility" here either for the same reason. I had no clue about the Perky O's and now I'm wondering if DS1 will react to them.

[kjbrown92]

Originally Posted by JacquelineR

There are special toaster bag things you can get which are reusable and intended to prevent cc. Are you sure they don't use those? I can't even imagine being that lax..
And we very rarely buy things "processed in a facility" here either for the same reason. I had no clue about the Perky O's and now I'm wondering if DS1 will react to them.

The whole first year they let them take the communion wafer every week and let them have french fries in cross-contaminated oil at restaurants about once a month... until their numbers were worse at the next year's GI appt. Then they "got it".

[lil_miss_understood]

Originally Posted by kjbrown92

The whole first year they let them take the communion wafer every week and let them have french fries in cross-contaminated oil at restaurants about once a month... until their numbers were worse at the next year's GI appt. Then they "got it".

Ya know, there's still some things i'm figuring out but... wow. I guess it really IS hard to figure out without such a supportive community as the one with which we have been blessed. (this forum, to clarify )

[dollyanna]

Thanks for your replies. So the answer, I guess is "it depends".

I'm really kind of stuck with this GF/nut-free thing though. Is there another brand other than Bob's Red Mill that makes GF stuff that maybe doesn't make nut flours? I just can't imagine being totally flour-free forever...

[mamafish9]

Someone else had the same GF/nut free issue with flours a few months ago in this forum, and they found a flour that would work - EnerG maybe? I'll try a search...

Yup, found the thread

[kjbrown92]

You could try Barry's Farm and email them. I've used them for some flours.

[Tigeresse]

We have been gf since my ds was diagnosed w/Celiac in July. For everything I buy packaged, I am pretty strict, but I have not yet switched out untensils, pans, etc. Waiting for follow-up bloodwork for that. I discussed with the GI things I had read about issues w/things like toothpaste, traces of gluten left in ovens etc., and she told me to begin w/the diet and removing gluten from the home. If his bloodwork is still showing reaction then we will have to take it further. The good thing is ds feels sooooo much better so I know we are doing something right, just don't know if there is still a reaction that is symptom-free, hoping for the best!

[dollyanna]

Originally Posted by mamafish9

Someone else had the same GF/nut free issue with flours a few months ago in this forum, and they found a flour that would work - EnerG maybe? I'll try a search...

Yup, found the thread

thank you mamafish!!! This is SUPER helpful. I will check out Barry's Farm as well, kjbrown.

I knew I couldn't be the first person on this board to have this problem

Thanks for all the tips, everyone!

[dollyanna]

Just got my email response from Bob's, so figured I'd share:

"We are mindful of the concerns of the allergen-sensitive community and we utilize "Good Manufacturing Practices" to diminish any risk of allergen cross-contact. We segregate our ingredients and thoroughly clean our equipment between production runs with high powered air pressure. Also, the first 30 lbs of product run on any line is purged. We process our products on an "as needed" basis, so the same lines could potentially be used. Also, we do not have shellfish at our plant.


It is Bob's Red Mill's policy and practice to apply elective allergen advisory statements to all Bob's Red Mill product labels. Gluten Free products bear the following statement:

"Manufactured in a facility that also uses tree nuts and soy."

All other (non gluten free) products bear the following statement:

"Manufactured in a facility that also uses tree nuts, soy, wheat, eggs, and milk."

Any labels seen without an allergy advisory statement were produced prior to our recent implementation of this practice. Our labels will be replaced with the newer version as soon as existing stock runs out."

[LBMarie9]

Originally Posted by JacquelineR

Ya know, there's still some things i'm figuring out but... wow. I guess it really IS hard to figure out without such a supportive community as the one with which we have been blessed. (this forum, to clarify )

it's true--there are a lot of friends of friends i hear about (ie--it's okay to just scrape the breading off your chicken--because my friend whose girls have CD does that) things like that- that I can't believe--I don't think some drs inform people about all things--it's up to the parents to learn--don't you think?

where can I get those toaster bags? I'm interested (though they'd still be scary maybe?) I still haven't gotten rid of our old toaster--and it has sat untouched for a year since it's not safe to use.

[lil_miss_understood]

I'm not sure where to get them anymore. Mrs Roben's used to sell them but that site has closed now.

just googled... they're called toast it and they're teflon tho some say plastic

eta: i do agree that it's up to parents to learn, but there should be some kind of handout/brochure or something to give them some basics, yk?

[crunchy_mama]

Originally Posted by JacquelineR

eta: i do agree that it's up to parents to learn, but there should be some kind of handout/brochure or something to give them some basics, yk?

I feel torn on this as well. Without the internet how would people know about such things, other than what the Dr tells them? And why would anyone assume the Dr's instructions about something so important is patently false? I converted a family to gf- have talked a lot to her about cc- we are close- but then I hear her dh talking to my dh about buying their kid a hamburger and taking off the bun. Seriously, they don't get it. However, they are avoiding due to eczema, not to any known Celiac's. So, I keep trying to talk about cross contamination and getting the word out, but it is ultimately other people's decision.

Kathy- I have a dear online friend whose daughter was officially diagnosed Celiac's as well and she took regular Communion for at least a year or so because their Catholic Dr said it was ok- then her sensitivity grew so they switched to the low/no gluten Host until then the sensitivity grew again and now she just receives the wine. She is a smart woman as well, but this is what she was told about sensitivity levels. I am still not receiving myself although it is very heartbreaking for me- I keep meaning to schedule an appt with the priest, but keep putting it off for some reason.

As to the general question of how strict to be when *just* gi- I cannot hardly answer that because that is not our perspective- so I don't know how I would act. WE don't consume products that *may* contain gluten, but don't necessarily exclude just because they are manufactured in the same facility. My kitchen is not 100% gf, but I do not do any non- gf baking, do not even have any non-gf baking goods in the house as the flour is so insidious the amount of time and effort to make sure there was no dust landing on anything it wasn't supposed to - like perhaps a drawer was left open and it lands on big or small utensils or in the food processor- or the residual dust in the oven- or even having to worry about thoroughly getting every last bit out from under my fingernails etc- too much worry and stress for me. Dh doesn't need baked goods anyway. I'd rather buy him store-bought if needed then have to worry about it.

[lil_miss_understood]

Originally Posted by crunchy_mama

I feel torn on this as well. Without the internet how would people know about such things, other than what the Dr tells them? And why would anyone assume the Dr's instructions about something so important is patently false? I converted a family to gf- have talked a lot to her about cc- we are close- but then I hear her dh talking to my dh about buying their kid a hamburger and taking off the bun. Seriously, they don't get it. However, they are avoiding due to eczema, not to any known Celiac's. So, I keep trying to talk about cross contamination and getting the word out, but it is ultimately other people's decision.

Kathy- I have a dear online friend whose daughter was officially diagnosed Celiac's as well and she took regular Communion for at least a year or so because their Catholic Dr said it was ok- then her sensitivity grew so they switched to the low/no gluten Host until then the sensitivity grew again and now she just receives the wine. She is a smart woman as well, but this is what she was told about sensitivity levels. I am still not receiving myself although it is very heartbreaking for me- I keep meaning to schedule an appt with the priest, but keep putting it off for some reason.

As to the general question of how strict to be when *just* gi- I cannot hardly answer that because that is not our perspective- so I don't know how I would act. WE don't consume products that *may* contain gluten, but don't necessarily exclude just because they are manufactured in the same facility. My kitchen is not 100% gf, but I do not do any non- gf baking, do not even have any non-gf baking goods in the house as the flour is so insidious the amount of time and effort to make sure there was no dust landing on anything it wasn't supposed to - like perhaps a drawer was left open and it lands on big or small utensils or in the food processor- or the residual dust in the oven- or even having to worry about thoroughly getting every last bit out from under my fingernails etc- too much worry and stress for me. Dh doesn't need baked goods anyway. I'd rather buy him store-bought if needed then have to worry about it.

completely agreed and there are always libraries but, in all honesty, the vast majority of people have been indoctrinated in so many ways on so many levels to just take the dr's word and not seek further info. And then there's the whole "food pyramid" bs which many are taught before they can even speak really (thinking preschool here); I actually had a friend dx'd with CD who wouldn't switch to the gf diet because it "wasn't healthy.. goes totally against the food pyramid." I was totally clueless at the time so didn't argue.

[LBMarie9]

Originally Posted by JacquelineR

I'm not sure where to get them anymore. Mrs Roben's used to sell them but that site has closed now.

just googled... they're called toast it and they're teflon tho some say plastic

eta: i do agree that it's up to parents to learn, but there should be some kind of handout/brochure or something to give them some basics, yk?

teflon is bad right? maybe I'll just stick to getting a new toaster someday (we've only made bread a handful of times anyways)--

yea--I've heard some people that got a little brochure and the dr said--he can't have gluten which is in wheat barley rye--bye-goodluck, (obviously exagerated but still- it's sad)-
also--the bit about 50% off celiacs are or will start reacting to casein the same way--is that for GI people too ---not many people know that or care.

I am SOOO grateful for this comunity--you all have saved me and my kids (well I'm still working on it--you help me everyday--thank you!)