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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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Cooking Oils
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18 posts in this topic

I know the subject of oils can be a contentious one, but here goes. I was wondering what oils/brands work for supersensitives. From reading previous posts, olive oil seems pretty good, but I would like to use other oils. Has anyone had much luck with any mainstream brands of safflower, canola,cottonseed, soybean oil? ...or even the dreaded corn oil? I've been using Spectrum shortening which is actually palm oil and I seem to do ok. Some testing has been done on another site, but most of the testing was done on olive oils. I would prefer to only get responses from folks who pretty much have to avoid processed gluten-free foods which is where I am unfortunately. I have had days when I have felt pretty rough and have suspected oils, but I'm not sure. Thanks, Dave

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I only use Bertolli Olive Oil. Soy, Corn, Canola all make me sick. I don't eat any processed foods at all except spices, herbs and coffee.

I have had gluten like reactions to canola oil. I avoid corn and soy like I do gluten.

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Absolutely no problems with any oils. None.

Extra virgin olive oil, walnut, coconut, canola, palm, cottonseed, safflower, sunflower.

All good for me. :)

In moderation.

I am not a soybean oil user, however, but that is because I know soy affects estrogen levels and is, essentially, not the best food on the planet (IMHO)

I am very sensitive to trace gluten.

I react almost immediately with neurological symptoms.

Like everything else when dealing with Celiac, everyone is different.

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I have no problems with oils as long as I don't eat too much. I can't tolerate too much fat but that is not a gluten problem.

I'm also sensitive to small amounts of gluten.

How long have you been gluten-free? You just might need more healing time. Fats can be a problem even when you are healed.

I generally use olive oil and canola and haven't had a problem with any brand I have tried.

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I avoid almost all processed foods. I tried several oils until I found one brand of olive oil which I can tolerate. It sounds like you have one of those already. Good luck finding another one, and please message me about it if you do.

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I mostly use coconut oil. I save my bacon grease too, for frying potatoes, or browning meats.

I use Earth Balnce soy free spread as my "butter".

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I have no problems with oils as long as I don't eat too much. I can't tolerate too much fat but that is not a gluten problem.

I'm also sensitive to small amounts of gluten.

How long have you been gluten-free? You just might need more healing time. Fats can be a problem even when you are healed.

I generally use olive oil and canola and haven't had a problem with any brand I have tried.

I've been off of gluten for about 6 years. I've been struggling with an ever increasing sensitivity. I did really well for a couple of years at the beginning but have been having trouble staying ahead of the curve since then. We do not have a gluten free kitchen and I am beginning to think tweaking what I eat may be futile as long as there are crumbs everywhere here. We have not had much success with trying to keep the kitchen cleaner due to the fact that we are natural born slobs-myself included. Doing all the research and trying to use only products produced in a gluten free facility is a little ridiculous when my own "facility" is so contaminated. The breakroom at work is just as bad. I wash my hands a bizillion times a day and try to be careful, but it may not be enough. I may just have to lay down the law. I've been hesitant til now mainly because of my teenage daughter who is very sweet and would do it if I asked, but I hate to put that kind of restriction on her and her friends. Anyway, trying it for a month to see what happens would not be the end of the world for the fam.

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We do not have a gluten free kitchen and I am beginning to think tweaking what I eat may be futile as long as there are crumbs everywhere here. We have not had much success with trying to keep the kitchen cleaner due to the fact that we are natural born slobs-myself included. Doing all the research and trying to use only products produced in a gluten free facility is a little ridiculous when my own "facility" is so contaminated. The breakroom at work is just as bad.

Could be the problem, hon---although MANY folks on here seem to do very well co-existing with Gluten Eaters. I do honestly wonder how they manage that so well? :blink:

I am very grateful hubs went gluten-free with me (of his own accord, I did not ask) about a month after my DX. His thinking was --for starters, what a pain in the arse to make two of everything and have two sets of condiments and toaster slots and, and, and.. :rolleyes: ..

But mostly, he felt that CC was just too easy, even though I was ridiculously anal about cleaning up after I made his sandwich. It did make me feel really nervous to handle it constantly though and I am very "neat" and like my house that way, I admit it. (I am not a NBS--natural born slob :lol: )

Hope you figure out what's getting you, but you are right: You could search for a food culprit 'til the cows come home , only to find it was CC all along. The real question is "How did you do so well up to this point?"

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Could be the problem, hon---although MANY folks on here seem to do very well co-existing with Gluten Eaters. I do honestly wonder how they manage that so well? :blink:

I am very grateful hubs went gluten-free with me (of his own accord, I did not ask) about a month after my DX. His thinking was --for starters, what a pain in the arse to make two of everything and have two sets of condiments and toaster slots and, and, and.. :rolleyes: ..

But mostly, he felt that CC was just too easy, even though I was ridiculously anal about cleaning up after I made his sandwich. It did make me feel really nervous to handle it constantly though and I am very "neat" and like my house that way, I admit it. (I am not a NBS--natural born slob :lol: )

Hope you figure out what's getting you, but you are right: You could search for a food culprit 'til the cows come home , only to find it was CC all along. The real question is "How did you do so well up to this point?"

I think the reason I did so well for a couple of years was a lower level of sensitivity than I have now. I started out not very well informed and very exposed to cc due to ignorance. There was no reason for me to do a lot of research at that time because in a matter of a few days of giving up gluten I went from being woken up in the middle of the night with terrible cramps and dia. to having a cast iron stomach and no problems. I mean I was doing things like ordering salisbury steak and just scraping the gravy off. For some reason I did great like that for a couple of years. Then I started having problems again with dia (though not as bad as before diagnosis) and an almost constant pain in my gut and started eating only gluten free food and stopped doing the scraping gravy thing among others, but still did not feel all that well. This went on for a few years and then I gave up processed gluten-free foods which is where I stand now. I feel a lot better- the constant gut pain is gone, but I am plagued with occasional bouts of dia. Sometimes there is a month between episodes, sometimes a week, sometimes 2 weeks, but it still seems to get me no matter how carefull I am with my diet. I have tried eliminating dairy, corn, soy, but no luck.

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Sometimes there is a month between episodes, sometimes a week, sometimes 2 weeks, but it still seems to get me no matter how carefull I am with my diet. I have tried eliminating dairy, corn, soy, but no luck.

DWS,

have you investigated salicylates? (sals for short) ???http://salicylatesensitivity.com/about/food-guide/

I have bad DH (dermatitis herpetiformis) which naturally puts me in the super sensitive category. My gastro and neuro symptoms cleared soon after going gluten free however DH is taking a LONG TIME to clear. It is getting better but getting to 'clear/healed' will be 2-3 years - that is my prediction (it is almost a year so far :(

My gastro symptoms & DH flare with sals.

This intolerance is a completely different experience for me and I am only in my early days of navigating it. This isn't simply avoiding a specific food. Sals occur in virtually everything we eat and it is whether there is a little bit or lots that makes the difference. I also believe that, like gluten intake, it is cumulative so the more you eat over time the bigger the bodies response.. You should have seen me after a few days of corn cobs and popcorn.. very nasty.

BTW My problems with raisins and corn were what tipped other forum members to suggest sals to me.

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DWS,

BTW Today I totally gluten free'ed my house. It was about 11 months overdue and remarkably good for my piece of mind. My son is 9y/o and has been gluten lite but with indications of DH so I knew it was time to get serious. I gave away or threw out about 200 dollars worth of baking goods, frozen goods etc - not easy but worth it for our health and getting some sleep at night!!!!

Clean it out now.. Liams mates know what the rules are at our place and are more than willing to comply - your daughters friends will also be pleased that you let them visit and hangout.. and the food thing is not really an issue if you fill them with gluten-free goodies.

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I mean I was doing things like ordering salisbury steak and just scraping the gravy off. For some reason I did great like that for a couple of years.

:o

You were doing "great" scraping off gravy? (meaning, you had no bowel issues?)

Hon, that's major CC! (you probably know this, right?)

If you are on a voluntary gluten-free diet, that's one thing.

But, if you are a DXed Celiac, you should not be doing things like this. Even if you are not having major symptoms, you're doing damage to the small intestine (and your body) whether or not you "feel it".

I think-- from what you have shared here-that THIS CC could well be your problem, perhaps? Not oils, soy, dairy,corn-- since eliminating these has not helped, as you say.

Cross contamination- from foods you think are "okay" to eat and sharing a house with (in your words :) )wheat-eating slobs suggests you are not really as "gluten free" as you could be.

IMHO

Hope you feel better soon. Best wishes, IH

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I started off so sensitive that we needed a gluten free household and it has gotten even worse since. I totally understand not wanting to make your whole family go gluten free for you. Is there another spot in the house with sink access? You could make your own kitchen with a toaster over, microwave and dorm fridge. Might be worth a try. I agree it is a bit silly to go for gluten free facilities when your own facilities are so contaminated. You will have to have a food only in the kitchen rule too, for the gluten eaters. I hope you can get something figured out.

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I know the subject of oils can be a contentious one, but here goes. I was wondering what oils/brands work for supersensitives. From reading previous posts, olive oil seems pretty good, but I would like to use other oils. Has anyone had much luck with any mainstream brands of safflower, canola,cottonseed, soybean oil? ...or even the dreaded corn oil? I've been using Spectrum shortening which is actually palm oil and I seem to do ok. Some testing has been done on another site, but most of the testing was done on olive oils. I would prefer to only get responses from folks who pretty much have to avoid processed gluten-free foods which is where I am unfortunately. I have had days when I have felt pretty rough and have suspected oils, but I'm not sure. Thanks, Dave

I use olive oil .I have reacted to most other oils.

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:o

You were doing "great" scraping off gravy? (meaning, you had no bowel issues?)

Hon, that's major CC! (you probably know this, right?)

If you are on a voluntary gluten-free diet, that's one thing.

But, if you are a DXed Celiac, you should not be doing things like this. Even if you are not having major symptoms, you're doing damage to the small intestine (and your body) whether or not you "feel it".

I think-- from what you have shared here-that THIS CC could well be your problem, perhaps? Not oils, soy, dairy,corn-- since eliminating these has not helped, as you say.

Cross contamination- from foods you think are "okay" to eat and sharing a house with (in your words :) )wheat-eating slobs suggests you are not really as "gluten free" as you could be.

IMHO

Hope you feel better soon. Best wishes, IH

Oh I understand about cc in foods now. Scraping the gravy was like 4 years ago before I got onto this forum and learned a lot. I now take the same precautions a lot of supersensitives do except the shared household is probably the weak link. I may be non-celiac gluten intolerant based on the testing I have had done and the fact that my symptoms went away so fast even on an imperfect gluten-free diet. The only test that was positive was an 84 on an Igg blood test when normal is 30 or less. I think it is rare for true celiacs to recover so quickly due to the time it takes the intestines to heal. The return of symptoms 2 years into the diet is what I have been trying to figure out and deal with.
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Oh I understand about cc in foods now. Scraping the gravy was like 4 years ago before I got onto this forum and learned a lot. I now take the same precautions a lot of supersensitives do except the shared household is probably the weak link. I may be non-celiac gluten intolerant based on the testing I have had done and the fact that my symptoms went away so fast even on an imperfect gluten-free diet. The only test that was positive was an 84 on an Igg blood test when normal is 30 or less. I think it is rare for true celiacs to recover so quickly due to the time it takes the intestines to heal. The return of symptoms 2 years into the diet is what I have been trying to figure out and deal with.

I see. Well, I do hope you find your "culprit" and get well once more! Best to you!

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Hi Dws,

I save fat from cooking chicken in a ceramic cup. I put it in the refrigerator and use it for frying. Pretty easy and free too.

I don't know about the cc in the kitchen. That could definitely be a problem I think. Certainly if you are sharing a toaster or peanut butter or mayo jars etc. that is bad.

You could also be having ongoing problems from another food intolerance. It might be good to consider an elimination diet for that.

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I've been off of gluten for about 6 years. I've been struggling with an ever increasing sensitivity. I did really well for a couple of years at the beginning but have been having trouble staying ahead of the curve since then. We do not have a gluten free kitchen and I am beginning to think tweaking what I eat may be futile as long as there are crumbs everywhere here. We have not had much success with trying to keep the kitchen cleaner due to the fact that we are natural born slobs-myself included. Doing all the research and trying to use only products produced in a gluten free facility is a little ridiculous when my own "facility" is so contaminated. The breakroom at work is just as bad. I wash my hands a bizillion times a day and try to be careful, but it may not be enough. I may just have to lay down the law. I've been hesitant til now mainly because of my teenage daughter who is very sweet and would do it if I asked, but I hate to put that kind of restriction on her and her friends. Anyway, trying it for a month to see what happens would not be the end of the world for the fam.

Sounds like you have found the problem and you are very smart for admitting so. It can seem daunting to do but your food issues will not put restrictions on anyone. If the other system is not working for you, then your family can eat gluten outside the home or take better steps to ensure you will not be cc'd. Don't worry so much about putting others out....this is for your health. It's not a big deal and will teach them tolerance for others who get sick from crumbs.

The odds of anyone having a problem with a food that is safely consumed by the vast majority of the Celiac population is rare and usually is due to other food intolerances. Don't drive yourself crazy about that and look to the most obvious....those pesky crumbs left by others. ;)

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