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kenlove

Accidental Glutening List

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After diagnoses in June 06, I've been extremely careful about what goes in the mouth and any exposure to something thats going to make me sick again. I thought it might be interesting to make a list of the strange cases we've had in hopes of helping each other avoid similar troubles.

Here's two of my more unusual ones.

1.

Never would have thought that milk had gluten but sure enough, within minutes after eating a 1 inch slice of banana bread made with gluten-free flours, I was in trouble. Checked the pans the oven looked for stuff in the kitchen that may have caused it. My wife had got ride of all the

gluten containing mixes and flour and breads in the place. To make a long story shorter, she had put 1/4 cup of buttermilk in recipe that made 4 loaves. Turned out that Meadow Gold Dairy here in Hawaii has wheat to buttermilk and 1% here. Yep, I have to read labels on absolutely everything! Don't take anything for granted!

2.

I break out from DH often within minutes of getting glutened. In a sense the DH is easier to deal with than the pain in the gut which also happens. One morning without eating anything, I came downstairs and started working. While installing some software I started to write checks to pay some bills. Got it finished, licked the envelops, threw them in the box for the post office, turned back to the computer and watched the blisters forming on my hands. That happened 3 or 4 times in 2006 but thanks to help from the forum, I figured it out. Yep, it was the glue in the adhesive on the envelops. Paying bills was really making me sick! I've not licked one since and not had the problem since.

Anyone else have strange glutenings that took some effort to track down?

Ken

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Just curious, were the blisters on your hands really deep and do they develop within what seems like seconds? I used to get these all the time and just thought that I had touched something that I was alergic to but now I wonder, were these also a symptom of getting glutened? I haven't had them for years. They also really itched!

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I will add the two things that took the longest for me to figure out.

Drywall compound was one of the worst. I was actually still on an elimination diet and only eating whole unprocessed foods at the time. I was remodeling and couldn't figure out what was making me sick. After a difficult search I found the NIH website and checked my brand of drywall compound and sure enough it was formulated with wheat.

and

My canopener, I used to use the same one for pet and people food, silly me. I don't use much canned people food and every time I made something with tinned tomatoes I would get sick. I thought I had developed gluten type symptoms from nightshades until the light went off one day. I do wash my canopener but I guess not well enough. I got a different canopener for people food, labeled them clearly and now have no problems with canned foods.

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Guest Cari5393

I had a hard time figuring what was making me sick for about 2 weeks, right before Christmas. I knew I was being glutened, the sympoms were textbook (for me). But i couldnt figure out how! Then I was in the kitchen washing dishes and my 9 year old son came into the kitchen to make a bagle. I watched him rub olive oil on it, then sprinkle shredded cheese on it, some pepper and garlic and he put it in the toaster oven. Being the wasteful minded person he is, he scooped up all the cheese that fell off the bagle (bagle crumbs and all) and put them back in the cheese bag. And of course that was the same bag of cheese I was using to put on my eggs each morning! It was then I realized I needed pretty much 2 of everything and one with a big 'gluten-free' on it! With 2 other little boys in the house 4 and 2, I figured that would be the easiest way to stay safe.

Cari

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Thats what I get -- Wish I could say I have not them for years too. I'm pretty sure its from some exposure to gluten, at least for me.

Just curious, were the blisters on your hands really deep and do they develop within what seems like seconds? I used to get these all the time and just thought that I had touched something that I was alergic to but now I wonder, were these also a symptom of getting glutened? I haven't had them for years. They also really itched!

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Drywall Compound-- I never would have guessed but it makes sense when thought about. Have to wonder about plaster and spackle now too. Having an addition put on the house next month. I used to do remodels too but in this case I'll plant two acres of exotic fruit trees for the guy putting up the 2 story extension.

GUess I've always been weird about can openers. I like old fashioned hand ones and just trow them into the sink each time I use it.

thanks

Ken

I will add the two things that took the longest for me to figure out.

Drywall compound was one of the worst. I was actually still on an elimination diet and only eating whole unprocessed foods at the time. I was remodeling and couldn't figure out what was making me sick. After a difficult search I found the NIH website and checked my brand of drywall compound and sure enough it was formulated with wheat.

and

My canopener, I used to use the same one for pet and people food, silly me. I don't use much canned people food and every time I made something with tinned tomatoes I would get sick. I thought I had developed gluten type symptoms from nightshades until the light went off one day. I do wash my canopener but I guess not well enough. I got a different canopener for people food, labeled them clearly and now have no problems with canned foods.

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Sounds like one of my kids 20 years ago. He once poured his milk back into the juice carton <G> yucch!

I had a hard time figuring what was making me sick for about 2 weeks, right before Christmas. I knew I was being glutened, the sympoms were textbook (for me). But i couldnt figure out how! Then I was in the kitchen washing dishes and my 9 year old son came into the kitchen to make a bagle. I watched him rub olive oil on it, then sprinkle shredded cheese on it, some pepper and garlic and he put it in the toaster oven. Being the wasteful minded person he is, he scooped up all the cheese that fell off the bagle (bagle crumbs and all) and put them back in the cheese bag. And of course that was the same bag of cheese I was using to put on my eggs each morning! It was then I realized I needed pretty much 2 of everything and one with a big 'gluten-free' on it! With 2 other little boys in the house 4 and 2, I figured that would be the easiest way to stay safe.

Cari

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Drywall Compound-- I never would have guessed but it makes sense when thought about. Have to wonder about plaster and spackle now too. Having an addition put on the house next month. I used to do remodels too but in this case I'll plant two acres of exotic fruit trees for the guy putting up the 2 story extension.

GUess I've always been weird about can openers. I like old fashioned hand ones and just trow them into the sink each time I use it.

thanks

Ken

I envy you the addition and him the fruit trees. Make sure they tape off the used part of the house while doing the addition to as great of an extent as you can. Depending on how it is being done you might even be able to do the break thru to the main house after most everything is done.

I also am old fashioned and would throw my crank can opener in the dish whenever I used it. In my case that wasn't enough. :)

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I'm thinking of planting the trees before or after remodel and asking them to do it when I'm in Japan in March away from the dust.

Then my wife can deal with it and arrange things the way she wants.

take care

I envy you the addition and him the fruit trees. Make sure they tape off the used part of the house while doing the addition to as great of an extent as you can. Depending on how it is being done you might even be able to do the break thru to the main house after most everything is done.

I also am old fashioned and would throw my crank can opener in the dish whenever I used it. In my case that wasn't enough. :)

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This one wasnt hard to track down so much as stupid/annoying. A friend of mine walked on the bus with Dunkin Donuts hot chocolate which, though possibly CC'd , is OK. She offered me a sip, and it tasted different then usual...then she said it is the new milky way flavor!! ARGH!! To make matters worse, I had rehearsal for Pride and Prejudice that afternoon...try wearing 1830's dresses and petticoats when your stomach looks like your 7 months pregnant! (and then needing to take off said dresses to use the bathroom...)

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Everyone in our house was having ice cream on Monday night, so I checked the box and thought "no obvious gluten ingredients" so I'll have a bit. And a bit more! We'll this led to a good bowl full, and it's now Wednesday lunch time and my guts have been like a washing machine for the last 36 hours!

I've only been on a gluten free lifestyle for a month, so I suppose I'm still a little unused to what to look for. It must have been the stabiliser or emulsifier. Or perhaps the colouring.

somebody stop me next time!

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Everyone in our house was having ice cream on Monday night, so I checked the box and thought "no obvious gluten ingredients" so I'll have a bit. And a bit more! We'll this led to a good bowl full, and it's now Wednesday lunch time and my guts have been like a washing machine for the last 36 hours!

I've only been on a gluten free lifestyle for a month, so I suppose I'm still a little unused to what to look for. It must have been the stabiliser or emulsifier. Or perhaps the colouring.

somebody stop me next time!

Sometimes in the begining people have a hard time digesting dairy. Hope that helps.

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One of the worst glutenings was from my vitamins. I had taken these vitamins before and they were always gluten-free. Well, one day I went to buy more vitamins and picked up the same one I had used for at least a year. My eyes have changed just enough that I can't read tiny print without my glasses. I tried to readthe label just to be safe, but I couldn't make out the words very well. So I bought them because they were always safe. I took one on the way home. I started getting sick. I took one the next day too. I just got sicker and couldn't figure out the source. I read every box and lable in the house. I called the labs that made the new prescription I had and that wasn't it. Three days into this terrible reaction I finally got out my glasses and read the vitamins label. It contained wheat and oats and barley. Talk about feeling like death! I got worse every day for about a week even after stopping taking the vitamins. It was horrible!!!! My face and hands even swelled up!

The other one I could never figure out was Snapple Iced Tea. I love Snapple. I drank it every day. When I was first diagnosed, it contained gluten. The thought of a drink containing gluten never even occurred to me. So I continued drinking my Snapple and not feeling that great. Eventuallymy husband called them and found out Snapple contained gluten. I practically cried. Now their product is gluten free, but it still makes me sick every time!

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It could be something in the ice cream, very few that I can eat without trouble, but it could also be some cross contamination if your family is like mine and were using the same spoons they eat with will eating something else.

good luck!

Everyone in our house was having ice cream on Monday night, so I checked the box and thought "no obvious gluten ingredients" so I'll have a bit. And a bit more! We'll this led to a good bowl full, and it's now Wednesday lunch time and my guts have been like a washing machine for the last 36 hours!

I've only been on a gluten free lifestyle for a month, so I suppose I'm still a little unused to what to look for. It must have been the stabiliser or emulsifier. Or perhaps the colouring.

somebody stop me next time!

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Yea I've kicked myself a few times too. Can remember being extremely hungry after a long day working in Japan a year ago and picking up one of those rice balls, not thinking and taking a bite. Can't remember where we were driving but as soon as I bit into it and remembered the soy sauce taste. i dumped the bag of stuff on the seat and spit up into the bag trying to get it all out of me. I was really lucky that time.

Although Male, I'm told I often look 7 months pregnant usually by my 30 year old son who I remind had always wanted a younger brother <G>

This one wasnt hard to track down so much as stupid/annoying. A friend of mine walked on the bus with Dunkin Donuts hot chocolate which, though possibly CC'd , is OK. She offered me a sip, and it tasted different then usual...then she said it is the new milky way flavor!! ARGH!! To make matters worse, I had rehearsal for Pride and Prejudice that afternoon...try wearing 1830's dresses and petticoats when your stomach looks like your 7 months pregnant! (and then needing to take off said dresses to use the bathroom...)

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Once called centrum who told me I had to call each time I bought a bottle since sometimes they were gluten-free and sometimes not. Guess whatever they buy thats cheap to keep the stuff glued together!

I always loved Snapple diet ice tea too but in Hawaii, where they really need it, its almost impossible to find diet drinks other than coke and pepsi which I dont drink.

take care

ken

One of the worst glutenings was from my vitamins. I had taken these vitamins before and they were always gluten-free. Well, one day I went to buy more vitamins and picked up the same one I had used for at least a year. My eyes have changed just enough that I can't read tiny print without my glasses. I tried to readthe label just to be safe, but I couldn't make out the words very well. So I bought them because they were always safe. I took one on the way home. I started getting sick. I took one the next day too. I just got sicker and couldn't figure out the source. I read every box and lable in the house. I called the labs that made the new prescription I had and that wasn't it. Three days into this terrible reaction I finally got out my glasses and read the vitamins label. It contained wheat and oats and barley. Talk about feeling like death! I got worse every day for about a week even after stopping taking the vitamins. It was horrible!!!! My face and hands even swelled up!

The other one I could never figure out was Snapple Iced Tea. I love Snapple. I drank it every day. When I was first diagnosed, it contained gluten. The thought of a drink containing gluten never even occurred to me. So I continued drinking my Snapple and not feeling that great. Eventuallymy husband called them and found out Snapple contained gluten. I practically cried. Now their product is gluten free, but it still makes me sick every time!

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Play Dough.

Granted, that's obvious... hindsight. But, my daughter was playing with playdough in school - I didn't know that. One day I could smell the trademark playdough smell on her hands. At first, I thought very little of it, as I know she's not EATING the playdough. But, alas... it has been making her sick.

She now has about $35.00 worth of gluten free Aroma-Dough, and we are hoping the sickness goes away.

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vitamin E oil that I used to use to keep my toenails from cracking (applied with my fingers - before breakfast every day...)

had wheat germ oil

had the oil from pre-gluten-free days, didn't even think to check until a couple months in when on a pretty restricted diet (veggies, fruit, meat, rice, water and herbs, cooked myself from raw, that's IT) I kept on feeling mildly glutened. Not sure if the oil was the main culprit, but eliminating it (plus going to gluten-free personal care products and eliminating dried herbs) did help solve the problem!

also now wash my hands before food no matter how "clean" I think my hands are already

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My worst "cant find the glutening source" was one night I made gluten-free pizza.... and sure enough got ill soon afterwards....... checked everything I made the pizza from sure enough everything was safe..... pan was safe, ingredients, stainless clean bowls..... OH NO!!!!! I then noticed the wooden rolling pin I used to roll out my crust sitting in the dish drainer! It had been packed away during most of the pre-move and I was so excited to get it unpacked I made the pizza just so I could use it again..... I now have a new one and the old one has been donated to a nice home...

Strangest one would have been hubby out in the garage drinking beer with his friends...... I come home from being gone 2 days at work and he comes into the kitchen whips me around and plants a really nice kiss on me...... crud... he was drinking beer.... somedays life just stinks, lol

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I forgot that one too, got back from harvesting and wife was ecstatic about something, gave me a big kiss in the middle of your tuna sandwich

on french bread. I hate crumbs!

<G>

My worst "cant find the glutening source" was one night I made gluten-free pizza.... and sure enough got ill soon afterwards....... checked everything I made the pizza from sure enough everything was safe..... pan was safe, ingredients, stainless clean bowls..... OH NO!!!!! I then noticed the wooden rolling pin I used to roll out my crust sitting in the dish drainer! It had been packed away during most of the pre-move and I was so excited to get it unpacked I made the pizza just so I could use it again..... I now have a new one and the old one has been donated to a nice home...

Strangest one would have been hubby out in the garage drinking beer with his friends...... I come home from being gone 2 days at work and he comes into the kitchen whips me around and plants a really nice kiss on me...... crud... he was drinking beer.... somedays life just stinks, lol

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This one was just boneheaded -

On my birthday last November, I happened to stop at Whole Foods. I noticed one of their gluten-free Carrot Cakes, and got all excited. I decided to treat myself. I needed to stop by Raleys anyway, and while there, looked at a can of frosting. Saw nothing wrong with the ingredients, then noticed another brand was on sale, so I grabbed the on sale one.

After dinner I sliced a few slices, and layered on the cream cheese frosting. 40 minutes later, I was hurting. Doh! I never checked the second can. Silly me.

Geoff

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I had my worst glutening ever from a Sam's Club rotisserie chicken that said it was allergen (including gluten) free. In case you've never tried those chickens, they are the most delectable wonderfulness of chicken ever. And my symptoms are delayed, by about 48 hours. So I had a big huge pile of it two nights in a row. Ow.

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My feeling is that when we get glutened by things like Sams club chicken and things often marketed as Gluten Free is that its based on ignorance of the producer and we are the ones that suffer. Long time chefs I work with here and in Japan think of soy sauce as soy. The little they know of celiac is that we cant have wheat and rye, bread and pasta -- they don't know that the components also contain the proteins deadly to us.

Thanks for sharing this as it really re-enforces my belief in the need for continuing education for chefs and food producers about celiac and other allergies. I just came from our monthly American Culinary Federation meeting where I always raise the topic in some relation to one of the projects I work on as a board member and committee chair. Today was the first time in the past 10 years where we had a 2nd person in the group of mostly executive chefs at the resorts here that was celiac. I didnt feel alone for the first time! YEAH!

Ken

I had my worst glutening ever from a Sam's Club rotisserie chicken that said it was allergen (including gluten) free. In case you've never tried those chickens, they are the most delectable wonderfulness of chicken ever. And my symptoms are delayed, by about 48 hours. So I had a big huge pile of it two nights in a row. Ow.

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My canopener, I used to use the same one for pet and people food, silly me. I don't use much canned people food and every time I made something with tinned tomatoes I would get sick. I thought I had developed gluten type symptoms from nightshades until the light went off one day. I do wash my canopener but I guess not well enough. I got a different canopener for people food, labeled them clearly and now have no problems with canned foods.

We USED to eat over my mother in law's house a lot....and this was the one thing she couldn't understand....we begged her not to use her electric can opener for this very reason. She wouldn't change her ways and started opening the cans BEFORE we got there so we wouldn't see that she used the electric can opener (her daughter lived with her, so someone young was there to open those dern cans for her, so it wasn't that it couldn't be done the old fashioned way). Needless to say, we have since stopped eating meals at her house as we couldn't trust her judgment. Now she's gotten too frail to cook, so it seemed to work out without us having to tell her why we stopped eating there.

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We USED to eat over my mother in law's house a lot....and this was the one thing she couldn't understand....we begged her not to use her electric can opener for this very reason. She wouldn't change her ways and started opening the cans BEFORE we got there so we wouldn't see that she used the electric can opener (her daughter lived with her, so someone young was there to open those dern cans for her, so it wasn't that it couldn't be done the old fashioned way). Needless to say, we have since stopped eating meals at her house as we couldn't trust her judgment. Now she's gotten too frail to cook, so it seemed to work out without us having to tell her why we stopped eating there.

It's sad that we're forced to avoid people or change the things we say and do becuase our families can't or won't think logically. I'm not sure why food and the preparation of food for other people is such an emotional issue for so many. I love cooking for my boyfriend and friends, but I wouldnt enjoy it if something in my cooking made them sick. I would make something different, my reaction wouldn't be, "Well, I don't think you should get sick from this so just eat it anyway."

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