Celiac Sprue & Doctor Too!

[angel_jd1 10]

Don't misunderstand me. I'm not recommending eating mainsteam oats as a breakfast cereal. My point was that there is probalby so little oatmeal in the Taco Bell hard tortillas that many celiacs will not be bothered by the miniscule amount of CC on an occasional basis. At least, that is my experience when eating at Taco Bell.

Steve

Knowingly contaminating yourself is just not a smart idea. You are suggesting that people contaminate themselves? ANY amount of gluten that you are ingesting into your system can/will cause damage to your intestines. I personally don't care to cause myself harm on purpose. Please don't suggest that others try!

-Jessica

[trents 217]

Knowingly contaminating yourself is just not a smart idea. You are suggesting that people contaminate themselves? ANY amount of gluten that you are ingesting into your system can/will cause damage to your intestines. I personally don't care to cause myself harm on purpose. Please don't suggest that others try!

-Jessica

My, we're getting hostile, aren't we? My conviction is that Celiacs vary in their sensitvity. Just trying to be practical that's all. A celiac may be in a situation where they have to chose between Taco Bell and going hungry.

Steve

[BeckyW 1]

BTW: If you have an egg allergy TELL YOUR ANESTHESIA PROVIDER!

Just wondering Russ, what is the importance of the egg allergy with the anesthesia?

[penguin 5]

My, we're getting hostile, aren't we? My conviction is that Celiacs vary in their sensitvity. Just trying to be practical that's all. A celiac may be in a situation where they have to chose between Taco Bell and going hungry.

Steve

You have fun with that. Even the COMPANY tells you to stay away from it, and it's not good enough for you. I'm assuming that in this scenario where the celiac has to choose between the taco or going hungry, Taco Bell no longer makes pintos and cheese or steak bowls with no jalepeno sauce?

I agree with Jessica, you're free to knowingly ingest gluten, but please don't suggest to others that they do the same. Taco Bell does have gluten-free options.

[Rikki Tikki 2]

I personally cannot eat oats in any form but I think what Steve is saying is that studies have shown that oats can be safe for celiacs. Many people have posted on here that they eat oats without a reaction and I think he was just posting his thoughts. I have also read research that suggests oats are safe, so while I cannot have them some people seem to be able to tolerate them

[angel_jd1 10]

My, we're getting hostile, aren't we? My conviction is that Celiacs vary in their sensitvity. Just trying to be practical that's all. A celiac may be in a situation where they have to chose between Taco Bell and going hungry.

Steve

Nope not hostile at all. Just saying that if you care to damage yourself that is fine. Please do not suggest to others that it is a good idea.

-Jessica

[elonwy 3]

The FACT remains that commercially grown oats in the united states are not safe for celiacs because of cross contamination during growth and processing. For those Celiacs who can tolerate oats there is at least one company who grows and processes them in such a way that they are free of contamination here in the US, and McCanns in Ireland also has safe growth/process requirements and regulary tests for contamination.

Other than that, no other oat products should be ingested by Celiacs, whether they react or not.

I can eat oats, but I only eat McCanns.

As far as the taco bell tacos, they are fried in oil that is shared with other items that have gluten, and should not be consumed on that basis alone, whether or not they contain oats. This is not safe, and should not be recommended to anyone. The tostado shell does not contain oats, and is not fried.

Elonwy

[RKB_MD 1]

Couple o' things:

First: A HUGE thank you to this board and the link to the meal cards! I just went to a local Peruvian restaurant. I brought my Spanish language diet card and had a wonderful meal that I, in no way, am "worried" about. It was so nice being able to go out to eat, and not fear every bite. I can't wait to use it at all sorts of other places. Thai, Indian, Japanese, HERE I COME! Basically, everything I have a hard time cooking myself...

Next: For those with Egg and Soy allergies. Let your anesthesiologist know. Reason is that one of the main drugs we use is called Propofol (fabulous for endoscopy sedation). It is a drug that is used for sedation procedures, but also is used to induce a state of anesthesia for total anesthesia. Propofol is delivered in a lecithin and soybean oil suspension. There are substitutes, we just need to know.

Last: I am going to side on the part of those who say - don't do it, with regards to foods with any ppm of wheat-gluten/ giladin content. If you can avoid it, do so. There are obviously people around who are so sensitive that they cannot even deal with food that has contacted giladin-containing foods. Personally, I'm pretty sensitive, but I have not (knock on wood) had a problem if I have to separate a sandwich to get the "goods" out. However, I would not KNOWINGLY consume foods that contain giladin.

OK: time to go do another "happy dance" about the meal cards...

[trents 217]

The FACT remains that commercially grown oats in the united states are not safe for celiacs because of cross contamination during growth and processing. For those Celiacs who can tolerate oats there is at least one company who grows and processes them in such a way that they are free of contamination here in the US, and McCanns in Ireland also has safe growth/process requirements and regulary tests for contamination.

Other than that, no other oat products should be ingested by Celiacs, whether they react or not.

I can eat oats, but I only eat McCanns.

As far as the taco bell tacos, they are fried in oil that is shared with other items that have gluten, and should not be consumed on that basis alone, whether or not they contain oats. This is not safe, and should not be recommended to anyone. The tostado shell does not contain oats, and is not fried.

Elonwy

Actually, the hard taco corn torilla shells are not cooked with other gluten containing foods, at least not in the TB restaurants. They are precooked and in the TB restaurants themselves they are taken out of a bag and just warmed. I confirmed that just now by calling one of my local franchises. Whether or not they are deep fried with other gluten containing foods when they are being produced I don't know but it seems unlikely that would be the case. I would think things like that being produced in mass quantity probably have a dedicated vat.

Thanks for the info about the tostado shells. That's good to know.

Steve

[Helena 0]

Russ,

Thanks for the heads up about the Propofol. I'm actually trying to figure out the safe alternatives to diazemuls and fentanyl (sp.?) right now . . . both of which my GI doctor was going to give me for the flexible sigmoidoscopy and gastroscopy that I'm scheduled for. Good thing I researched this---I'm anaphylactic to egg and soy so diazemuls will be out.

What would be alternatives for the diazemuls/fentanyl combination? (My GI doctor is on vacation right now so I can't ask him, and in any case, I need to research the meds on my own and then consult with my allergist because my allergy situation is complicated.

I also wanted to provide another perspective on the trend towards banning peanuts on commercial flights about which you commented. I can understand why people with celiac would be frustrated with the pretzel snacks . . . but for people with severe peanut allergies, the issue isn't that they will be deprived of food if peanuts are being served but that their health can be put at risk if everyone around them is opening vacuum-sealed bags. I know that whether people can react just when peanut butter is being consumed in their vicinity is controversial . . . but there has only been 1 medical study on this. (Some doctors accept the possibility. Others, like my allergist, do not. However, both of my sisters do react, and they are not alone. )

*But* allergists do recognize that when those packages of peanuts are opened that some peanut protein becomes airborne which can cause hives, wheezing, eye swelling, etc. There was a study done (published in the Journal of Allergy and Clinical Immunology) in which researchers obtained air filters from a commercial plane and discovered that there was an appreciable amount of peanut protein.

The only way to treat anaphylaxis is a shot of epinephrine followed by *prompt* treatment in the hospital (the epinephrine in many cases is not enough. Very rarely people die even when medical treatment is available).

So peanuts on board airplanes really do put peoples' lives at risk . . . of course there is the argument that people with peanut allergies should just stay home. But that is discriminatory.

[eKatherine 5]

Russ,

Thanks for the heads up about the Propofol. I'm actually trying to figure out the safe alternatives to diazemuls and fentanyl (sp.?) right now . . . both of which my GI doctor was going to give me for the flexible sigmoidoscopy and gastroscopy that I'm scheduled for. Good thing I researched this---I'm anaphylactic to egg and soy so diazemuls will be out.

What would be alternatives for the diazemuls/fentanyl combination? (My GI doctor is on vacation right now so I can't ask him, and in any case, I need to research the meds on my own and then consult with my allergist because my allergy situation is complicated.

I also wanted to provide another perspective on the trend towards banning peanuts on commercial flights about which you commented. I can understand why people with celiac would be frustrated with the pretzel snacks . . . but for people with severe peanut allergies, the issue isn't that they will be deprived of food if peanuts are being served but that their health can be put at risk if everyone around them is opening vacuum-sealed bags. I know that whether people can react just when peanut butter is being consumed in their vicinity is controversial . . . but there has only been 1 medical study on this. (Some doctors accept the possibility. Others, like my allergist, do not. However, both of my sisters do react, and they are not alone. )

*But* allergists do recognize that when those packages of peanuts are opened that some peanut protein becomes airborne which can cause hives, wheezing, eye swelling, etc. There was a study done (published in the Journal of Allergy and Clinical Immunology) in which researchers obtained air filters from a commercial plane and discovered that there was an appreciable amount of peanut protein.

The only way to treat anaphylaxis is a shot of epinephrine followed by *prompt* treatment in the hospital (the epinephrine in many cases is not enough. Very rarely people die even when medical treatment is available).

So peanuts on board airplanes really do put peoples' lives at risk . . . of course there is the argument that people with peanut allergies should just stay home. But that is discriminatory.

I think they should just stop serving snacks if they're just going to decide to sock it to another sensitivity group, one that is larger than those with peanut allergies. The flight attendant always looks at me like I have two heads when I give her back the packet of stale pretel bits and say I can't eat them.

[Nantzie 2]

I'd much rather not have something to eat than put other people at the risk of anaphylaxis.

But maybe that's just me.

[DingoGirl 12]

Are you really a doctor?

Tavi -

balsamic vinegar.....WHAT?? I eat it all the time.....just skimmed these pages but h ad to ask....

Doctor - welcome - Peruvian restaurant - exotic - we don't have that in these parts....

Anasthesia....loved it the two times I had it (appendectomy, age 40, endoscopy/colonoscopy this year)...anything that can take me to my Magic Place.....always good.....

[happygirl 7]

https://www.celiac.com/st_prod.html?p_prodi...-35106112548.2a

balsamic vinegar is safe. it is the flavored "vinagrettes" that could be in question. hope this helps.

[Rikki Tikki 2]

There you are Susan, I have been scanning the boards hoping to see you! Even asked about you in Rachelville 2. Hope all is well

[DingoGirl 12]

https://www.celiac.com/st_prod.html?p_prodi...-35106112548.2a

balsamic vinegar is safe. it is the flavored "vinagrettes" that could be in question. hope this helps.

Whew! thanks! I have never had a problem with regular or white balsamic....

There you are Susan, I have been scanning the boards hoping to see you! Even asked about you in Rachelville 2. Hope all is well

TAvi! I have not been posting as much, been quite busy in painting house etc. and have friends here for three days. but, I am most often found in that crazy "tazorac" thread that Cecile has hijacked, and which has nothign to do wtih my face peelign any more. Come visit! I sometimes show up in R2 - -

(oops - sorry - guilty again - complete digression of topic)

[gfp 0]

I'd much rather not have something to eat than put other people at the risk of anaphylaxis.

But maybe that's just me.

No I agree but I agree with eKatherine too.

It goes a bit further, I don't want the person next to me eating a crusty roll and spilling crumbs over me either. I don't have two heads!

[Helena 0]

Yeah, it would be great if people would be more aware of dietary restrictions and provide appropriate alternatives . . . And thanks for the support on the allergy issue.

by the way, peanut allergies are not rare or not rarer than celiac disease. it affects 1% of US adults and 3% of American children . . . that's not taking other food allergies into account. Allergists are agreed that allergies are on the rise . . . I went to a lecture where a researcher explained that it isn't just allergies---it is all autoimmune diseases. It would be difficult to know about whether celiac is on the rise because it is so underdiagnosed . . . but I bet it is.

[eKatherine 5]

Yeah, it would be great if people would be more aware of dietary restrictions and provide appropriate alternatives . . . And thanks for the support on the allergy issue.

by the way, peanut allergies are not rare or not rarer than celiac disease. it affects 1% of US adults and 3% of American children . . . that's not taking other food allergies into account. Allergists are agreed that allergies are on the rise . . . I went to a lecture where a researcher explained that it isn't just allergies---it is all autoimmune diseases. It would be difficult to know about whether celiac is on the rise because it is so underdiagnosed . . . but I bet it is.

While peanut allergies may not be rarer than celiac disease, they are certainly rarer than gluten intolerance.

And I am certain that there is more celiac than ever and at earlier ages because people are eating more gluten than ever in the typical American diet.

[gfp 0]

While peanut allergies may not be rarer than celiac disease, they are certainly rarer than gluten intolerance.

And I am certain that there is more celiac than ever and at earlier ages because people are eating more gluten than ever in the typical American diet.

I agree .... but it is also an awareness thing.

Those seats on planes are awfully close together.... back in the "carry on days" i would take my own food and have someone next to me from my perspective "throwing" bread crumbs into my carefully prepared gluten-free meal.

Hence I learned to wait .... then ask the person to please be careful, I have an allergy.

Sometimes it works and sometimes you have two heads!

The difference is try asking the steward to change seats because of celiac .... if it was a peanut allergy then they would respond but celiac? never heard of it.

[eleep 1]

Couple o' things:

First: A HUGE thank you to this board and the link to the meal cards! I just went to a local Peruvian restaurant. I brought my Spanish language diet card and had a wonderful meal that I, in no way, am "worried" about.

What is Peruvian food like? I have a friend coming back from Peru soon and he's promised to cook a meal with me because he claims it's a very celiac-friendly cuisine.

eleep

[gfp 0]

What is Peruvian food like? I have a friend coming back from Peru soon and he's promised to cook a meal with me because he claims it's a very celiac-friendly cuisine.

eleep

Roast guinea pig?

[jerseyangel 413]

Roast guinea pig?

[lonewolf 0]

Roast guinea pig?

Yeah, either that or seviche made with octopus. (Seviche is raw fish or octopus that is soaked in a very strong acidy liquid like lime and lemon juice.) We had a house guest from Peru once and he made us seviche from octopus as a way to say thanks for our hospitality .

[eKatherine 5]

What is Peruvian food like? I have a friend coming back from Peru soon and he's promised to cook a meal with me because he claims it's a very celiac-friendly cuisine.

eleep

Peruvian cooking