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Poll About Getting Glutened

Guest BERNESES

By Guest BERNESES
in Coping with Celiac Disease

Poll about getting glutened  

66 members have voted

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Guest BERNESES
Guest BERNESES
Posted

Just wondering if the amount of accidents goes down as you get better at this! Thanks, Beverly

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codetalker Contributor
codetalker
Posted

I could not answer question #1 because there was no choice for being glutened less than once a year. I guess that means my response to your question is a yes. It does get better with practice. I am glutened very rarely now. Of course, there are certain mitigating factors. I cook almost all my own food and eat very little processed food. I rarely eat out. I avoid office lunches, etc. and when I can't avoid a business lunch I bring my own food whenever possible. All of that probably skews the results.

Carriefaith Enthusiast
Carriefaith
Posted

I've been gluten free for almost 2 years now and I believe that I have a gluten reaction about once every 2 months (so I voted once a month). I think most of my reactions are from cross contamination at home or from "gluten free" products.

codetalker Contributor
codetalker
Posted
I've been gluten free for almost 2 years now and I believe that I have a gluten reaction about once every 2 months (so I voted once a month). I think most of my reactions are from cross contamination at home or from "gluten free" products.

I was at a similar point after about 2 years as well. Then, I did the math. Every 2 months is 6 times a year. Each time (at least for me) means 1 week of D and 2-3 weeks of irritibility and grouchiness. That works out to minimum 6 weeks/year of D and 12-18 weeks/year (3-4 1/2 months/year) of emotional imbalance. When I realized that, I had no choice but to say, "enough is enough". I took a hard line and things are a lot more stable. The price is high but very much worth paying (at least for me).

Guest BERNESES
Guest BERNESES
Posted

Thanks to everyone who voted so far- I appreciate the feedback. I go through phases where I take the hard line too- and then I start to feel better and take an unnecessary chance (usually the whole "processed in a facility that also processes wheat") but, to me, it's happening far too often so from now on I am not giving anything with that warning on it a chance. I'm going to either make my own or only eat dedicated facility stuff. I've been gluten-free for a year and though my reactions are not nearly as severe as they were (I recover much more quickly) a day sick is one day too many.

Carriefaith Enthusiast
Carriefaith
Posted
I was at a similar point after about 2 years as well. Then, I did the math. Every 2 months is 6 times a year. Each time (at least for me) means 1 week of D and 2-3 weeks of irritibility and grouchiness. That works out to minimum 6 weeks/year of D and 12-18 weeks/year (3-4 1/2 months/year) of emotional imbalance. When I realized that, I had no choice but to say, "enough is enough". I took a hard line and things are a lot more stable. The price is high but very much worth paying (at least for me).
I am super sensitive and I react to products that others don't. For example, if a product is gluten free and produced in a facility with wheat, then I will usually feel sick, but others will report having no problems. Here is a list of products that I have reacted to:

Bob's Red Mill

Butterball

Maple Leaf

Campbells

MacDonalds fries

A large bottle of Club House vanilla extract

Humpty Dumpty

Lays (maybe a dairy contamination)

I believe that I reacted to Lundburg Rice chips (they do have gluten products)

Does anyone else have problems with these products? My question to all this is, if someone with celiac disease is reacting to a product, shouldn't everyone who has celiac disease stay away from it? Specifically, wouldn't the damage in the intestine be the same in all people with celiac disease who ate those products?

mouse Enthusiast
mouse
Posted

I am lucky in that I can eat gluten-free products that are made in a plant where wheat flour is. I also know within 4 bites that I have ingested gluten and so I can now pinpoint the item with accuracy. I feel unwell for a couple of days and then I feel better for a day or two and then the stomach pains and heartburn start all over. I seesaw back and forth for about a week.

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danikali Enthusiast
danikali
Posted

I am JUST LIKE YOU Berneses. I do EVERYTHING right, and then I start feeling better, so I take a chance, and there I am again, glutened. For example, I was feeling pretty 'normal' Friday and Saturday, so Saturday night, me and my DF decided to try a gluten free resturant. (Sambuca in NYC). Well, the food WAS AMAZING!!!!!!!! I got gluten-free pasta, and it tasted normal!!!! Even my DF had some and loved it. Well, of course, that night I went to bed and woke up with HORRIBLE heartburn and back pain, and the next day (yesterday) my stomach was all messed up. I had gas coming from both ways all day, my back was aching and tight, and this morning I woke up with the heartburn again and my left arm is really weak and tight. Sooooooo, so much for eating out!

But I believe that I get glutened about 2 times a month and it lasts for about a week or so with different symptoms.........I'm clearly not as careful as I should be. And I too get sick from processed foods produced in a facility with wheat, but usually only mainstream products.

plantime Contributor
plantime
Posted
My question to all this is, if someone with celiac disease is reacting to a product, shouldn't everyone who has celiac disease stay away from it? Specifically, wouldn't the damage in the intestine be the same in all people with celiac disease who ate those products?

In thinking about your question, Carrie, I would have to say yes, we should all avoid those products. However, I have many food allergies, and I can honestly say that some of them mimic the symptoms of gluten contamination, so how do I know that your reaction is strictly gluten, and not a latent allergy or intolerance? That is the whole problem with celiac, the symptoms are just like symptoms of other things!

Most of my glutenings come from being told something is gluten-free, when it is not. Case in point, McDonald's fries. My daughter works in a McDonald's, and she went over how they use their oils, and told me it was safe to eat the fries. (She hates seeing me sick, and is my best help with labels!) She had no way of knowing that the fries were originally processed with wheat flavoring in the oil. So, I got glutened. Live and learn. I have noticed that my glutenings are getter farther and farther between, as watching for gluten and suspicious foods becomes more and more second nature.

Carriefaith Enthusiast
Carriefaith
Posted
In thinking about your question, Carrie, I would have to say yes, we should all avoid those products. However, I have many food allergies, and I can honestly say that some of them mimic the symptoms of gluten contamination, so how do I know that your reaction is strictly gluten, and not a latent allergy or intolerance? That is the whole problem with celiac, the symptoms are just like symptoms of other things!
I am dairy intolerant and my symptoms can be similar to a gluten reaction. My reactions to lays products were most likely from dairy, but there is no way in knowing for sure. However, I am almost certain that the rest of the products had gluten. I have very distinct gluten symptoms such as heart palpitations, a rash/hives, dizziness, and brain fog, which I don't get from dairy.
plantime Contributor
plantime
Posted

Ahh, that is nice to know! Thank you! :D

Rachel--24 Collaborator
Rachel--24
Posted
My question to all this is, if someone with celiac disease is reacting to a product, shouldn't everyone who has celiac disease stay away from it? Specifically, wouldn't the damage in the intestine be the same in all people with celiac disease who ate those products?

My thoughts are that for every gluten-free product there is out there...there is also someone who's reacted to it. If we all stopped eating stuff because someone reacted to it....what would we end up with? Meat, fruit, veggies? There are people who get reactions from those foods too.

I think with everyone having different intolerances and such there is absolutely no way to know "for sure" if someone is reacting to gluten or if their body just isnt liking a particular ingredient in the product. Unless I notice a ton of people reacting to a certain product I'll probably take my chances...unless of course my body is telling me otherwise.

Guest Viola
Guest Viola
Posted

I probably get cross contaminated once every month or two, but I refuse to spend my life locked in my own house, which is probably where I get most of the contamination, seeing how my DH isn't gluten free and leaves crumbs every where :lol:

When the club goes out for a meal, I go too, and I don't bring my own food, I just take the time to make sure ahead of the date to visit or phone the restaurant. I've made up my mind to be as "normal" as possible. And so far have been doing well at it. I do bring my own food when the club has the 'breed education' days as getting food in the mall food court if pretty much a bust. I do have coffee and fries at McDonald's with my friends, and I do go to all the quilt shows, craft fairs and Kennel Club activities. Life is too short to let Celiac disease stop all the things I enjoy. Instead of going to friends to dinner, they come here, or we do pot luck and I include a large dish of what ever that's safe. My friends always make sure there is something like fruit plates or cheese and veggie dishes as well.

Guest BERNESES
Guest BERNESES
Posted

I know- it's so hard with everyone having different sensitivity levels and other intolerances. I guess I'm just trying to gauge this because I've had a reaction 3 times in the last two weeks. One was to Eden organic refried beans, the plant also processes wheat. The other was to peanuts I ate on a plane while traveling (stupid, I know) while we were coming home. I was running out of gluten-free food and starving. I read the label and the only allergy info on it was peanuts.

The last one is really sad to me- I'm pretty sure it was from my 2 year old niece planting a big wet kiss on me after eating oreos. She never usually kisses me on the lips-usually the cheek. She caught me off-guard and Boom- within a half hour, I felt. It just makes me really sad.

Guest Viola
Guest Viola
Posted

Ah Bev. That is sad. Hopefully you will be over the gluten contamination soon. It's a shame when we have to watch out for kisses.

I never eat peanuts unless they are right from the shell, I seem to always have a problem with the shelled ones. Not sure why, but stay away from them.

Guest BERNESES
Guest BERNESES
Posted

Thanks Viola- it really bummed me out (and I'm 99% sure that's what it was). My reaction to gluten is very distinct but this one was a whammy!

I'm just frustrated because I've tried the elimination diet and really, nothing seems to have much of an effect on me. Lactose in large amounts (like ice cream) makes me constipated but other than that, I can't pinpoint anything else.

I too refuse to let Celiac's limit my life. I am willing to go out to eat (I actually don't do too bad in that arena but we are very particular about where we go) and I'll always bring somethiong to eat along with me when I go somewhere, but I just seem to be supersensitive. I guess i'll just have to be more vigilant.

codetalker Contributor
codetalker
Posted
...I start to feel better and take an unnecessary chance....

I had to laugh when I read that. I mentioned in my post that I've taken a hard line in regard to staying gluten-free. The ironic thing is that for the past several months, I've been struggling with GERD and have been facing the same situation all over again. I start to feel better and get the GERD problem under control and then go back to eating/drinking the very things that caused the problem in the first place. For example, Sunday I came in after shoveling snow and really had to fight the urge to have a hot cup of tea. Had to settle instead for a hot cup of water. Bleagh!!!

It's obviously much easier to talk a hard line than to live it. It is for me at least.

Guest BERNESES
Guest BERNESES
Posted
It's obviously much easier to talk a hard line than to live it. It is for me at least.

Ain't that the truth! It really is. I think because taking the hard line feels so limiting to me. It's hard enough to eat gluten-free but then to have a long list of other things you have to avoid (like kisses from your sweet 2 year old niece) makes it all the more frustrating. When I say I take unnecessary chances, I don't mean I eat anything EVER that seems like it would have gluten based on the label, but that's not good enough. Blah! I'm grumpy and whiney this morning.

Guest Viola
Guest Viola
Posted
I had to laugh when I read that. I mentioned in my post that I've taken a hard line in regard to staying gluten-free. The ironic thing is that for the past several months, I've been struggling with GERD and have been facing the same situation all over again. I start to feel better and get the GERD problem under control and then go back to eating/drinking the very things that caused the problem in the first place. For example, Sunday I came in after shoveling snow and really had to fight the urge to have a hot cup of tea. Had to settle instead for a hot cup of water. Bleagh!!!

It's obviously much easier to talk a hard line than to live it. It is for me at least.

I've got problems with GERD as well, I have my one cup of caffeen 'coffee' in the morning and then switch to decaf the rest of the day. You can get tea in decaf as well, you might find that more appealing than hot water. :)

dd6444 Rookie
dd6444
Posted
MacDonalds fries

I just raed Open Original Shared Link that says a flavoring agent that they use is derived from wheat and dairy :(

About the topic, I get glutened way more often than I should, but lately I've been going to restaurants that claim to have gluten free options. More often than not, I end up getting sick, so the food is probably cross contaminated.

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