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Celiac Vs. Gluten-intolerant - More Or Less Strict In Kitchen?


DeerGirl

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DeerGirl Apprentice

Reading old threads on kitchen organization and I started wondering --

Is there a difference between how people maintain their kitchen (how strict or stringent they are) if they do not have a confirmation of their celiac diagnosis?

I understand what a celiac diagnosis from most doctors means, as well as what gluten-intolerant means and have no judgment about what people consider themselves regardless of what their medical doctors said to them re: diagnosis. I was just wondering about how people all over the spectrum of gluten sensitivity/intolerance handle their kitchens -- and is there a trend depending on diagnosis or testing?

e.g., if people have unclear test results and so are definitely gluten intolerant but cannot tell currently if they meet clinical criteria for celiac, are they less strict about kitchen appliances/utensils and such?

I hope this makes sense.


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gfcookie Newbie
Reading old threads on kitchen organization and I started wondering --

Is there a difference between how people maintain their kitchen (how strict or stringent they are) if they do not have a confirmation of their celiac diagnosis?

I understand what a celiac diagnosis from most doctors means, as well as what gluten-intolerant means and have no judgment about what people consider themselves regardless of what their medical doctors said to them re: diagnosis. I was just wondering about how people all over the spectrum of gluten sensitivity/intolerance handle their kitchens -- and is there a trend depending on diagnosis or testing?

e.g., if people have unclear test results and so are definitely gluten intolerant but cannot tell currently if they meet clinical criteria for celiac, are they less strict about kitchen appliances/utensils and such?

I hope this makes sense.

you should be just as strict! i'm going to soon be sharing a kitchen with a gluten eater, and i will have separate toaster,pots, pans (I will have red ones, he will have black ones so there will be no mistake), cooking gear, condiments, area of the kitchen, as well as a rule that there can be no flour, brownie mix, cake mix, or anything else "dusty" in the kitchen. gluten intolerant or celiac, you are avoiding gluten, we're all in the same boat. it's up to you how strict to get, some people have separate refridgerators for gluten eaters...imo thats a tad extreme, but whatever makes you feel safe and whatever you can accomodate depending on your kitchen size.

JNBunnie1 Community Regular

Well, I tested negative via biopsy, as far as I know, I never had any blood tests. However, I have al the classical symptoms. Weight loss, malbasorption, IQ loss, the rash. All of which went away gluten free. So I call myself Celiac, because like someone said, science just hasn't caught up with us and we can't know how much damage we're doing. And I'm uber careful, in fact, there's some tiny bit o'gluten getting in my food right now, which leaves me with just a rash and tiredness. And I can't figure it out!!!!!!! Anyway. Hope that helps.

DeerGirl Apprentice

JNBunnie1 -- thanks it does help. I just started wondering how individuals deal, on a day to day basis, with the vagaries of their Dx.

blueeyedmanda Community Regular

I do share a kitchen with a non-celiac who still does eat gluten. When I got diagnosed I replaced all my pots and pans that were scratched and some of my old utensils. I bought a new toaster just for me. I only buy that gladware disposable tupperware so I eliminated a lot of costs by continuing to use that, I don't have a good track record with tupperware :)

I did go through and clean the entire kitchen, washed all the cabinet shelves and such. He does not eat pasta often so we just use all gluten-free pasta and bake mixes. The gluten food he does use is kept in his own cabinet. We do share pots and pans, which seems to work for me, I am never sick. We dish wash everything which I believe gets things clean, we do prewash before throwing the dishes in there.

We wipe down counters with paper towels.

This works for us, but it may not work for everyone. Just hope this helps a bit. Good Luck :)

YoloGx Rookie
I do share a kitchen with a non-celiac who still does eat gluten. When I got diagnosed I replaced all my pots and pans that were scratched and some of my old utensils. I bought a new toaster just for me. I only buy that gladware disposable tupperware so I eliminated a lot of costs by continuing to use that, I don't have a good track record with tupperware :)

I did go through and clean the entire kitchen, washed all the cabinet shelves and such. He does not eat pasta often so we just use all gluten-free pasta and bake mixes. The gluten food he does use is kept in his own cabinet. We do share pots and pans, which seems to work for me, I am never sick. We dish wash everything which I believe gets things clean, we do prewash before throwing the dishes in there.

We wipe down counters with paper towels.

This works for us, but it may not work for everyone. Just hope this helps a bit. Good Luck :)

I just threw out an old Betty Crocker cookbook my mother gave me that she used for years. Tonight I noticed it probably had caked in gluten soaked into its pages and dusting everything. I had used it the other day to get a recipe I altered for cookies and then got a reaction from that. The cookies were great but getting an extra glutening this last week wasn't worth it. I think it was one extra thing that contributed to my getting the flu that is going around. Up until now I have been pretty resistant to everything for the last year and 3/4. So out goes the book!

Yolo

gfp Enthusiast

A simple way to look at this is:

Negative biopsy ... means pretty much nothing unless you have been really hammering the gluten for a long time and know they took lots and lots of samples etc. and even then its never definitive.

Negative blood tests ... this depends largely on 'negative' ...

Firstly AgA tests could mean you are AgA deficient hence false neg.

Then there are degrees of negative ...

I don't really think that the boundaries are so easily defined ... what is 'normal' for instance is based on taking a random population and comparing to those with positive biopsy ... BUT this assumes in every paper I have seen that the normal incidence of celiac is 1:5000 or so... (i.e. negligible) and that biopsies are definitive.

Since we know normal incidence is between 1:200 and 1:300 this means that a large proportion of those classed as control were actually celaics, indeed 10x as many as 1:xxxx .. and at the same time many of the negative biopsies were also false negatives (who knows how many) ...

So if the take the numbers as being based on a normal population having a very tiny 1:5000 chance of having celiac this skews the numbers immensely. So say your result is 12-13 its hard to say exactly what this means.

Also ... no-one seems to know if a little bit more means a little worse or what... If the average is 10 then is 11 as bad as 20??? Who knows???

This is all well and good and playing with numbers ... but in the end do people go up or down with blood tests?? I mean say you eat the same amount of gluten each day over a year would the blood tests be consistent or up and down??

Might you get a 9 one day and 15 two weeks later or would it be still 9??? Also, say you get say 11 keep eating gluten might it be 14 after a year and maybe 18 three years later ??? I.E. does it get worse and worse???

All these questions are as far as I know pretty much unanswered ... in other words its totally possible that if you go over a threshold and keep eating gluten it will get worse and worse... it seems rather possible... so should we take the risk??

My personal belief is when playing with your health then take the cautious route.


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aikiducky Apprentice

I don't have an official diagnosis because I went gluten free before testing. I do however react to very small amounts of gluten, so I'm very strict about my diet, actually stricter than some diagnosed celiacs I know. I'm lucky in a way to have such clear symptoms because it keeps me from cheating. :P

Pauliina

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
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    • Jmartes71
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