"Super Sensitive" Celiacs.....

[Mother of Jibril]

In December I had a biopsy for what I thought was DH (turned out to be an id reaction) and I thought, enough is enough... I'm taking too many risks! I stopped eating at restaurants (with the exception of a very carefully chosen meal at Red Lobster for my birthday). I also cut all processed foods out of my diet with two exceptions... KIND bars and dark chocolate.

In the last few days I started noticing some gluten symptoms, and I was trying to figure out where the contamination was coming from. And then today I figured it out

There's this Lebanese market in my town that has a GREAT selection of chocolate. I always stick with the dark chocolate (at least 65%) and I don't like spend more than $3 a bar, so I tend to get the same brands over and over (Endangered Species, Chocolove, Equal Exchange, Green & Black, etc...). BUT... some of the really expensive bars are on sale right now So I bought some new brands of chocolate... and (ARGGHH!!!) I forgot to check the allergen label. And what do you know... one of the bars I bought is "processed in the same facility as wheat." I ate the last piece this morning.

That explains the rash, irritability, and bloating

[mastiffmommy]

Mastiffmommy - You may want to do some searches for more information, as the information you have is not the full story. If you need more info, feel free to PM me!

I'm sorry for hijacking this thread....back to super sensitive Celiacs

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By the way, has anyone else on here attempted to eat at Uno's? They now have gluten free pizza. We tried it (and I'm super sensitive) - and I did wonderfully! I'm sure you all can understand what it meant to have a good gluten free pizza that didn't make me sick and was absolutely delicious.

Thanks Happygirl - I really appreciate it. I am new and so HATE to get sick. It's the pits. (I am also new to forums in general and lack proper etiqutte most likely - I will learn fast - promise!)

[mastiffmommy]

Mastiffmommy - You may want to do some searches for more information, as the information you have is not the full story. If you need more info, feel free to PM me!

I'm sorry for hijacking this thread....back to super sensitive Celiacs

---------

By the way, has anyone else on here attempted to eat at Uno's? They now have gluten free pizza. We tried it (and I'm super sensitive) - and I did wonderfully! I'm sure you all can understand what it meant to have a good gluten free pizza that didn't make me sick and was absolutely delicious.

And a big Yummy Yes to Uno's Gluten free pizza!

[happygirl]

Thanks Happygirl - I really appreciate it. I am new and so HATE to get sick. It's the pits. (I am also new to forums in general and lack proper etiqutte most likely - I will learn fast - promise!)

I think your etiquette is delightful and I'm happy you have joined the forum - its such a great place! I'll send you a PM.

[burdee]

Rather than assuming every painful reaction means gluten contamination, consider that you might have other foods allergies, not just gluten intolerance. Reaction to soy sauce COULD mean you have a soy allergy, which is very common among celiacs. I took an ELISA test after I continued to have 'gut reactions' which I couldn't attribute to cross contamination or accidental gluten or dairy ingestion. The 100 food ELISA test revealed 2 more allergies. Then a spice/herb version of ELISA revealed 2 more allergies. Now that I have eliminated all my allergies, I have no more painful reactions to foods.

BURDEE

[dilettantesteph]

In December I had a biopsy for what I thought was DH (turned out to be an id reaction) and I thought, enough is enough... I'm taking too many risks! I stopped eating at restaurants (with the exception of a very carefully chosen meal at Red Lobster for my birthday). I also cut all processed foods out of my diet with two exceptions... KIND bars and dark chocolate.

In the last few days I started noticing some gluten symptoms, and I was trying to figure out where the contamination was coming from. And then today I figured it out

There's this Lebanese market in my town that has a GREAT selection of chocolate. I always stick with the dark chocolate (at least 65%) and I don't like spend more than $3 a bar, so I tend to get the same brands over and over (Endangered Species, Chocolove, Equal Exchange, Green & Black, etc...). BUT... some of the really expensive bars are on sale right now So I bought some new brands of chocolate... and (ARGGHH!!!) I forgot to check the allergen label. And what do you know... one of the bars I bought is "processed in the same facility as wheat." I ate the last piece this morning.

That explains the rash, irritability, and bloating

I think I had a reaction to a KIND bar and stopped eating them. Are they O.K.? Since they make bars that are not gluten free, I assumed that the gluten free bars are not processed in a wheat free facility. Do you know otherwise? I just looked them up and they make products containing oats as well. Since I am oat sensitive, that could have been what bothered me.

[GFinDC]

Oats are just totally not an option for me-certified or not. Through more testing, it was discovered that I have ASE-avenin sensitive enteropathy with a cross over reaction to gluten/gliadin . I cringe when I hear how the industry is pushing oats as a safe alternative for those with celiac. I do realize it is to each his/her own as far as making a decision to eat oats or not, having said this (and this is just my opinion) long term consumption of oats will prove disastrous. I eat cream of buckwheat and this does the job for me as far as a really good and safe alternate to oats. All the best, Mike

That buckwheat sounds like a good option for breakfast Mike. Sounds like something I need to try! The CSA newsletter article said that untreated celiacs who show avenin antibodies seem to stop making them after they go gluten-free. Kind of interesting. Sounds like more research is needed in the whole oats arena.

Hmmm, Mastiffmommy seems to have it right to me. The McDonald's web site nutrition info says their fries have wheat and milk in them. I don't know if they sprinkle on any gluten flavorings, but they already have wheat in the fries themselves so they are bad stuff from the get-go anyhow.

[happygirl]

GFinDC - I'll send you the same info I sent MM.

[lizard00]

By the way, has anyone else on here attempted to eat at Uno's? They now have gluten free pizza. We tried it (and I'm super sensitive) - and I did wonderfully! I'm sure you all can understand what it meant to have a good gluten free pizza that didn't make me sick and was absolutely delicious.

I haven't even checked to see if our Uno's is serving it yet, but I'm glad to see it's on the website menu.

I did, however, try Z Pizza the other day. They are a smaller chain, but their pizza is so GOOD!! They recently released a gluten free crust, and I had a lot of anxiety about going in there to try it. But I made myself do it. I asked them how they made it, and when I ordered, they yelled back to the "gluten-free area" "GLUTEN FREE ALERT! GLUTEN FREE ALERT!"

I felt so special Best part, it didn't make me sick! I splurged, and had some real cheese on it (since my option was soy or dairy, and soy makes me really sick). I had some very mild discomfort from eating all the cheese, but that passes pretty quickly and isn't enough to slow me down. It was such a treat to be able to go somewhere different!

I am so glad these companies are getting on board, and also seem to be understand how important it is to avoid contaminating our food... if they want return customers, anyway!

[happygirl]

All Uno's should be serving it now, per Open Original Shared Link

Liz, is Z Pizza a nationwide chain, or is it just something in your area? I love the gluten-free Alert! It is such a treat to be able to eat safely, when so many times, it seems like we can't.

[Mother of Jibril]

I think I had a reaction to a KIND bar and stopped eating them. Are they O.K.? Since they make bars that are not gluten free, I assumed that the gluten free bars are not processed in a wheat free facility. Do you know otherwise? I just looked them up and they make products containing oats as well. Since I am oat sensitive, that could have been what bothered me.

Hmmm... good question. I didn't think the KIND bars were bothering me, but then again... I thought I was having a mild reaction to rice (which I only eat once or twice a week).

I just looked at the "macadamia & apricot" package (which doesn't have oats) and it says "gluten free." The allergen statement says, "manufactured in a facility that uses peanuts, brazil nuts, walnuts, almonds and sesame seeds." I'll try to contact them and check it out. Maybe they don't list oats because they're considered gluten-free in Australia?

[lizard00]

All Uno's should be serving it now, per Open Original Shared Link

Liz, is Z Pizza a nationwide chain, or is it just something in your area? I love the gluten-free Alert! It is such a treat to be able to eat safely, when so many times, it seems like we can't.

They are nationwide, but I'm not sure how extensive they are yet. They started in California, and supposedly use only organic ingredients. They have a lot of really different pizza combinations, which I think is why I like them so much. You can get pepperoni, but you can also get some really different things, too.

There's quite a few locations in VA. Check out their web site www.zpizza.com

[mastiffmommy]

Rather than assuming every painful reaction means gluten contamination, consider that you might have other foods allergies, not just gluten intolerance. Reaction to soy sauce COULD mean you have a soy allergy, which is very common among celiacs. I took an ELISA test after I continued to have 'gut reactions' which I couldn't attribute to cross contamination or accidental gluten or dairy ingestion. The 100 food ELISA test revealed 2 more allergies. Then a spice/herb version of ELISA revealed 2 more allergies. Now that I have eliminated all my allergies, I have no more painful reactions to foods.

BURDEE

Hi BURDEE,

You make a good point I have not considered (as I am just too relieved to not be a mental and physical wreck anymore without eating gluten!). I really get sick with soy sauce (again through learning what I can and can't eat.) I will look into the soy allergy - good point. I will mention this ELISA test to my Dr. and look into that. It definitly can't hurt. Thanks!

[maile]

Hmmm... good question. I didn't think the KIND bars were bothering me, but then again... I thought I was having a mild reaction to rice (which I only eat once or twice a week).

I just looked at the "macadamia & apricot" package (which doesn't have oats) and it says "gluten free." The allergen statement says, "manufactured in a facility that uses peanuts, brazil nuts, walnuts, almonds and sesame seeds." I'll try to contact them and check it out. Maybe they don't list oats because they're considered gluten-free in Australia?

Mother of Jibril I would also be very interested in your findings, I'd just discovered these 2 weeks ago and had been using them for a "sweet fix", it'd be a downer if the bars were contaminated

[Mother of Jibril]

Mother of Jibril I would also be very interested in your findings, I'd just discovered these 2 weeks ago and had been using them for a "sweet fix", it'd be a downer if the bars were contaminated

I tried calling about an hour ago... the number is (212)616-3006. They're manufactured in Australia, but distributed in the US by a company in New York.

The woman I talked to said, "Wow. Nobody has ever asked me that before." She sent me to somebody's voice mail... hopefully they'll call back soon.

I know what you mean about the sweet fix! I know I could live without it, but it's such a tiny little vice (I don't smoke, don't drink, don't eat gluten, etc...). And they're so yummy

[JNBunnie1]

But I made myself do it. I asked them how they made it, and when I ordered, they yelled back to the "gluten-free area" "GLUTEN FREE ALERT! GLUTEN FREE ALERT!"

HAHAHAHAHAHAAAAAA!!!! Don't you wish that would happen every time you order food?

[lizard00]

HAHAHAHAHAHAAAAAA!!!! Don't you wish that would happen every time you order food?

SO MUCH! I found myself standing there, so happy that someone was calling attention to my disease. That's pretty sad, huh?

[MaryJones2]

Does anyone have a 2 lb. bread machine mix or recipe that they use that is free of dairy, soy and corn? I tried Pamela's and my body is telling me that it's got a little soy in there so I was hoping someone had another suggestion. I have a few nut based breads but was looking for rice, sorghum, bean, etc.

[happygirl]

Does anyone have a 2 lb. bread machine mix or recipe that they use that is free of dairy, soy and corn? I tried Pamela's and my body is telling me that it's got a little soy in there so I was hoping someone had another suggestion. I have a few nut based breads but was looking for rice, sorghum, bean, etc.

Janet - when you say no corn, can you have xanthan gum?

[MaryJones2]

I do ok with small amounts of corn in medications, xanthan gum, etc. but don't seem to tolerate cornstarch in mixes. I can do it once like at a restaurant but if I eat it for a few days I start to notice.

[happygirl]

Janet,

You may want to check out Better Batter gluten-free flour, as I believe it would meet your requirements - they have a TON of bread recipes, and even give directions for converting to a bread machine. (Open Original Shared Link)

Ingredients in their mix: Open Original Shared Link

Rice flour, Brown Rice Flour, Potato Starch, Tapioca Starch, Potato flour, Xanthan gum, Pectin.

Bread recipes: Open Original Shared Link I'm sure you could substitute your "milk" for their "milk." She provides lots of dairy free recipes, also.

[MaryJones2]

Awesome! I will try it out. I am also wondering about Miss Roben's. I haven't found many reviews or comments on that brand.

[happygirl]

I've tried some of them - good, but I haven't purchased them again.

[Mike M]

Just an FYI if anyone else is like me and very sensitive to Oats, I called Bob's Red Mill today and spoke with them about the gluten free flour's they make. I was suspicious that I was getting oat contamination causing me to have symptoms after eating gluten free goodies made with Bob's Red Mill. Sure enough, while they do have a dedicated facility for processing, they said they do indeed process the gluten free oats in the same facility on the same packaging equipment. This new "oat promotion for celiacs deal" is a real bummer for me. I just can't see it being healthy long term for any celiac (this is just my opinion) as the oat avinin protein is so close to the gluten/gliadin protein. Oh well, so it goes. All the best, Mike

[Gentleheart]

I think what is happening across the industry is that companies who honestly don't understand this complicated disease yet, are still trying to capture this new hot "gluten-free" market. It's just good business and you certainly can't blame them for going our direction. But they are trusting and following broad government guidelines or others like CODEX probably out of innocence. They think they are producing goods that will work for all of us at 200 ppm or 20 ppm or certainly at 10ppm. But what we are unfortunately finding out the hard way is that they only work for SOME of us. I spoke to Bob's Red Mill associates at a trade show a couple years ago. They were extremely interested in how to produce things we CAN eat. But they and others just aren't up to speed yet. Would you study something called celiac or gluten intolerance in depth if you didn't have to? The oat issue is a good example, Mike. I told them that many celiacs are also allergic to corn. They were flabbergasted. They grind on stone mills. Stone mills are impossible to clean totally. They told me that they process all the corn on the same stones as the gluten free flours because, " it's gluten free, isn't it?". The same thing is probably happening here with oats. They are trying hard, I'm sure. Happy customers are loyal customers. Education is what is needed here. It's coming, but slowly. And super sensitive people will just have to stay ahead of this on their own while they wait for the mainstream industry to catch up. I hope they do.