Local Celiac Support Group's Leader Makes Me Nervous!

[Electra]

I called today just to get some basic information and she gave me this statement that made me think she's going to be one of those that goes way overboard with this.......

"ANYTHING THAT IS NOT MARKED AS GLUTEN FREE HAS GLUTEN IN IT!!"

Well we all know that this statement is NOT true. Things like Milk and cheese do not have gluten and they are not marked as gluten free!! I know there is a chance of cross contamination with cheese, but there are other things like canned veggies that are not marked gluten free but they do not contain gluten.

My fear is that this support group is run by one of those super health conscious people that is against anything that's not natural. I just can't live on things marked Gluten Free around here. It's not possible unless I live on fresh meats and veggies and with 4 kids and my lifestyle there is no way that's happening any time soon, so how can I keep myself from getting discouraged if I go in there and she gives me no option?

[Viola 1]

Firstly, remember that 'hopefully' she is not going to be the only one there And of course, she can't restrict your options. Just keep an open mind and take away what you feel useful and leave the rest there. But the best part of these groups is that you do meet people that you can work with, find friends and help each other out.

Going to anything for the first time can be nerve racking, but you'll do just fine, because you are easy going and will soon attract the fun people.

[emcmaster]

Cheese can contain gluten - shredded cheese often has flour, cornstarch or potato starch (the latter two which are gluten-free of course) added to prevent sticking.

[happygirl]

Wow, that is extremely radical.

Given that the FDA does not even have a definition for what defines gluten free, and there is no law or regulation for putting gluten free on a label, I find that information to be extremely dangerous, considering that since there are no regulations, it could say gluten free and actually not be gluten free!

I think that is pretty unreasonable to expect people to follow that philosophy when our food labeling standards have yet to address it.

Is there another support group in the area (sometimes there are more than one, either different organizations GIG/CSA/CDF or if the area is large, two in the same group)?

It is probably worth going to check it out, and then decide for yourself if you think it is something you will benefit from and enjoy the time you spend there.

[Lisa]

Angie:

The bottom line here is that you need to suck in all the information that you can find. Digest it all. And, then, do the things that are best for you and your family.

If you can read labels, able to contact companies, rely with confidence with the good folk here, shut, what more would you need.

She does not give you options, YOU do. The power to a health life can truly be in your hands alone.

You might go to the support group to listen. If you find a comfort zone there, great, if not don't go back. I don't have the opportunity for a support group, but I sure find one. here.

Lisa

PS: Support woman is full of it. If she is just eating gluten free labled foods...she's starving to death.

[kbabe1968]

Wait....my apples aren't labelled, does that mean they contain gluten????? LOL

I know what you mean. And it can be scary. And I believe that there are people who DO react from the tiniets particles. BUT, I agree with poster who said - suck in ALL the information and make decisions that work for YOU. It is YOUR life. It is YOUR health. You need to do what works for YOU, no one else. And if they judge it, well, pfffffft on them!

[Phyllis28]

I agree everything with Momma Goose said. I have a Scharffen Berger Milk Chocolate Bar in front of me. It is not marked gluten free but the company confirmed by e-mail that all their chocolate is gluten free.

[Gentleheart]

I called today just to get some basic information and she gave me this statement that made me think she's going to be one of those that goes way overboard with this.......

"ANYTHING THAT IS NOT MARKED AS GLUTEN FREE HAS GLUTEN IN IT!!"

Well we all know that this statement is NOT true. Things like Milk and cheese do not have gluten and they are not marked as gluten free!! I know there is a chance of cross contamination with cheese, but there are other things like canned veggies that are not marked gluten free but they do not contain gluten.

My fear is that this support group is run by one of those super health conscious people that is against anything that's not natural. I just can't live on things marked Gluten Free around here. It's not possible unless I live on fresh meats and veggies and with 4 kids and my lifestyle there is no way that's happening any time soon, so how can I keep myself from getting discouraged if I go in there and she gives me no option?

I had the opposite experience. I have only gone to our one-day state celiac convention once. But I paid $40 which was supposed to include a meal, got up at 4 AM and traveled 200 miles just to get there. Naive me assumed that of all places it would surely be safe to eat there, so I didn't bring much of my own food. Big mistake.

They covered gluten elimination strictly enough, but made absolutely NO accomodations whatsoever for those of us with accompanying allergies like dairy, soy, eggs, etc. I eagerly went through the buffet line innocently asking the servers questions about what was in everything, since there were no signs with ingredients or anything. Can you believe it? No one knew anything! I actually left at the end of that convention having only eaten 1/2 cup of plain iceberg lettuce and some dry cereal from a paper cup off one of the vendor tables. I tried putting some plain olive oil on the lettuce and it was so rancid even the server agreed that it must have been put there by mistake.

I would be thrilled if I had a group who was actually trying to help teach us all how to efficiently eliminate as many allergens as needed and still eat as healthy as possible. They were exclusively gluten free and extremely junk food oriented. I know full well that I wasn't the only celiac there with other allergies or who would rather not eat tons of starch, shortening and white sugar.

[ravenwoodglass]

I would still go and as others said get all the info you can.

I actually have learned the hard way to basically eat as this person stated. For me that means my oven is my best friend. I am amazed how much stuff I can just wrap in foil and pop in an oven.

I am really thankful for Wegmans, they label everything. But all mainstream stuff gets a phone call from me. Mainstream companies are not required to list anything other than the main allergens. Gluten in flavoring and used as substance to keep stuff from sticking on the lines is common and they are not required to list. Cross contamination is also a risk with mainstream processed foods. It is really a crap shoot sometimes.

You don't have to do everything they tell you at the meetings but they will give you some support and knowledge, hopefully.

[jaten]

I am with ravenwoodglass.

[Electra]

"Wait....my apples aren't labelled, does that mean they contain gluten????? LOL "

LOL while I was on the phone with her, foods like those were my first thought. How come POP CORN doesn't say it's gluten free HMMMMMMMM LOL!!

[Electra]

I would still go and as others said get all the info you can.

I actually have learned the hard way to basically eat as this person stated. For me that means my oven is my best friend. I am amazed how much stuff I can just wrap in foil and pop in an oven.

I am really thankful for Wegmans, they label everything. But all mainstream stuff gets a phone call from me. Mainstream companies are not required to list anything other than the main allergens. Gluten in flavoring and used as substance to keep stuff from sticking on the lines is common and they are not required to list. Cross contamination is also a risk with mainstream processed foods. It is really a crap shoot sometimes.

You don't have to do everything they tell you at the meetings but they will give you some support and knowledge, hopefully.

Boo Hoo I've never heard of Wegman's until this board, and I'm sure we don't have it around here. I don't cook either and unless I quit my job (which is definitely interfering with my progress) then there is almost no chance I will ever avoid cross contamination. I own and run my own home day care and I provide the food that has to be approved through our state program and I have to provide gluten filled breads all the time so unless I wear gloves constantly and bleach constantly (which I have no time for with 4 kids of my own) then I might as well just throw in the towel :-(!! I soooooooo wish disability was an option for me just long enough for me to heal and get my life back UG!!

[Electra]

I had the opposite experience. I have only gone to our one-day state celiac convention once. But I paid $40 which was supposed to include a meal, got up at 4 AM and traveled 200 miles just to get there. Naive me assumed that of all places it would surely be safe to eat there, so I didn't bring much of my own food. Big mistake.

They covered gluten elimination strictly enough, but made absolutely NO accomodations whatsoever for those of us with accompanying allergies like dairy, soy, eggs, etc. I eagerly went through the buffet line innocently asking the servers questions about what was in everything, since there were no signs with ingredients or anything. Can you believe it? No one knew anything! I actually left at the end of that convention having only eaten 1/2 cup of plain iceberg lettuce and some dry cereal from a paper cup off one of the vendor tables. I tried putting some plain olive oil on the lettuce and it was so rancid even the server agreed that it must have been put there by mistake.

I would be thrilled if I had a group who was actually trying to help teach us all how to efficiently eliminate as many allergens as needed and still eat as healthy as possible. They were exclusively gluten free and extremely junk food oriented. I know full well that I wasn't the only celiac there with other allergies or who would rather not eat tons of starch, shortening and white sugar.

Yup that was one of her other statements that a lot of the women in the group have allergies to things like milk and soy as well, so you will get info from all avenues. I'm thinking I'm not sensitive to any of the other things but how will I actually know? Will skin allergy tests give you a positive result on these other things? I sure hope so because my daughter has an appt. next week and I really want some answers. If I am allergic to milk, soy, or anything else I'm probably going to completely lose it. This is soooooooooooooo NOT conducive to my lifestyle and I'm so stressed out right now wondering how in the world I can juggle my job and life without compromising my health UG!! CALGON TAKE ME AWAY LOL!!

[Electra]

I agree everything with Momma Goose said. I have a Scharffen Berger Milk Chocolate Bar in front of me. It is not marked gluten free but the company confirmed by e-mail that all their chocolate is gluten free.

Yah there is no doubt in my mind that certain products like Dinty Moore Beef Stew are gluten free, but when I heard her say that statement all I could think of is some radical "GRONOLA" (sorry to use that term but I'm being honest here) who was just completely against anything that wasn't organic. If I walk in there and the entire group is like that I think I'm going to hurl. I just can't deal with people who are not open minded to other facts besides their own.

I'm probably just taking her statement out of context and I'm hoping she was just saying that to me so that I would eat safely until she could give me some info, but I was just really put off by what she said.

She does take you on a walk through of a grocery store and a walk through of the health food store and "supposably" lets you know what you can and can not eat.

I'm just not ready for radical opinions right now and I really need to be gently eased into this in order to get through it lol!! I will probably just have to tell her to give it to me slow or I'm going to bolt like lightening lol!!

[tarnalberry]

Yah there is no doubt in my mind that certain products like Dinty Moore Beef Stew are gluten free, but when I heard her say that statement all I could think of is some radical "GRONOLA" (sorry to use that term but I'm being honest here) who was just completely against anything that wasn't organic.

You can be a "GRONOLA" and not think that 'if it's not labeled gluten free, it's got gluten', the two have nothing to do with each other.

[lovegrov]

I have yet to find a shredded cheese that actually had gluten. Every cheese I've checked uses cellulose to prevent clumping.

richard

[tarnalberry]

I have yet to find a shredded cheese that actually had gluten. Every cheese I've checked uses cellulose to prevent clumping.

richard

Following what richard is saying here, when you hear someone mentioning that wheat is used in something to keep it from sticking or something like that, think about whether or not the item is always going to get cooked before you eat it. If not, remember that uncooked wheat flour tastes nasty, and be skeptical that it will be used on uncooked items to prevent stickage. I'm not saying it won't, but think critically.

(Every story I've heard of "wheat flour is used to keep it from sticking" on an uncooked item, had been untrue. That's not helpful as a rule for shopping, because it's my personal experience only, but it's another piece of the puzzle.)

The only 'exception' to this has been oat flour on date pieces, but oat flour tastes different than wheat flour. (Y'all tasted raw flour as a kid baking in the kitchen too, right? Or am I the only strange one? )

...

So who's got the 'uncooked wheat to prevent sticking' story proof that buggers my story?

[lovegrov]

"They covered gluten elimination strictly enough, but made absolutely NO accomodations whatsoever for those of us with accompanying allergies like dairy, soy, eggs, etc. I eagerly went through the buffet line innocently asking the servers questions about what was in everything, since there were no signs with ingredients or anything. Can you believe it?"

Just my opinion, but when I go to a celiac meeting or convention, the ONLY thing I expect them to have accommodated for without being contacted is gluten. Folks who have other allergies or sensitivities should call ahead, just as we do for gluten. Servers generally have absolutely no idea whatsoever about ingredients and I don't expect them to. You have to talk to the peoeple who prepare the food for that.

A year after I was diagnosed I went to the national GIG meeting in Winston-Salem. One of the sessions I went to was a cooking demonstration by the women who run Glutenfreeda. About two/thirds of the way through, a woman raised her hand and complained that while the recipes were gluten-free, they had too much salt and fat for people who had to watch those things. One of the women apologized but said they were there to deal with the challenges posed specifically by gluten, not by allergens or fat and salt. The hotel that hosted the meeting (which cost more like $300) served some incredible gluten-free meals, but the dishes were not labeled for other allergens -- although I think the chefs were there so you could find out.

richard

[Electra]

You can be a "GRONOLA" and not think that 'if it's not labeled gluten free, it's got gluten', the two have nothing to do with each other.

Yes I am well aware of that, I was just being honest about what my first thoughts were. It's just that most of the people who I've come in contact with who are against anything that's not organic make me very uncomfortable, because I don't have the same beliefs and I just do not like it when people try to convince me to change what I know is right for me.

Here is the perfect example...When I first found out I had Celiac Disease I went into a small town health food store that is very popular in my area. The owners are very knowledgeable in health food, but the owner (even though we told him that I had Celiac Disease) still tried to get me to follow a blood type diet book that he STRONGLY believe would solve all of my issues. He just did not understand that this was a medical condition and he was NOT willing to open up his mind enough to realize that the diet he was recommending could kill me. I get the he was a strong believer, but NOTHING works for everyone and he was convinced that this would solve my problems.

My point here is that the statement that I got on the phone from the Celiac group leader leads me to believe that she is another one of those that is unwilling to bend from their beliefs. It does not mean that I think she is wrong just that what she is saying is not what is going to work for me, and It's difficult to trust the knowledge of someone who isn't willing to entertain the idea that there just may be more options out there for me. Yes I am making judgements on the group leader that I should not do, but this is my only way of venting and by doing so the ladies here have helped me realize that it's ok for me to at least give it a try. I feel more confident about going now then I did before I posted, and I'm hoping that the leader turns out to be a very knowledgeable, open minded person.

[Electra]

I have yet to find a shredded cheese that actually had gluten. Every cheese I've checked uses cellulose to prevent clumping.

richard

I agree!! All the cheeses I've looked at do not contain gluten, but I'm sure there are some out there. I just wish they would label the product Gluten-Free so we wouldn't have to try to interpret every ingredient!!

[Fiddle-Faddle]

Just my opinion, but when I go to a celiac meeting or convention, the ONLY thing I expect them to have accommodated for without being contacted is gluten. Folks who have other allergies or sensitivities should call ahead, just as we do for gluten.

richard

As far as I know, I don't have problems with anything but gluten. However, it seems obvious that a HUGE percentage of celiacs have other food allergies/issues as well. I think it is shortsighted and insensitive for a gluten convention serving food to NOT list every ingredient in what they are serving.

Otherwise, they might as well put up a sign saying, "We only welcome celiacs with ONE food intolerance here. The rest of you are not welcome here."

Gentleheart wasn't asking for all other allergens to be eliminated, just that ingredient labelling be provided. That's not something she should have to call about in advance; that's just plain common sense at a convention about a food intolerance!!!!!

Seems to me, if I can see it from that perspective, and I only have one food intolerance (so far), then maybe others could, too.

[DingoGirl]

I safely eat many foods that aren't labelled gluten-free, and I of course read lables religiously. I don't eat processed food at all any more (unless you cound the occasional potato chip, which contain only three ingredients, or Trader Joe's Flax Seed Soy Corn tortilla chips - my downfall but definitely gluten-free). If there's any doubt at all, I don't eat it (i.e., natural flavors mentioned without distinct clarification, etc.). This woman sounds annoying and ill-informed, and unfortunatley, the leader sets the tone for the group....doesn't sound as if she'll listen to anything and she's going to really make it difficult for newbies to the group.

Oh wait, my other downfall is Trader Joe's rice pudding.....not labelled gluten-free and I eat about two containers a week, if I haven't made my own. I also eat lots of corn tortillas, w/ three ingredients (stone ground corn flour, water, trace of lime - where is the gluten in that?), a staple of my diet, and that of many celiacs. And I agree w/ Richard, I have not found a shredded cheese that contains flour as anti-caking. I could go on and on with my list of things....you get the point.

But will she? Maybe you should print out this thread and hand it to her. At the end of the meeting, of course.

[Fiddle-Faddle]

I have yet to find a shredded cheese that actually had gluten. Every cheese I've checked uses cellulose to prevent clumping.

richard

But wheat straw might be the source for the cellulose. Google "cellulose from wheat" and dozens of links pop up. Here is just one: Open Original Shared Link

[Electra]

I safely eat many foods that aren't labelled gluten-free, and I of course read lables religiously. This woman sounds annoying and ill-informed, and unfortunatley, the leader sets the tone for the group....doesn't sound as if she'll listen to anything and she's going to really make it difficult for newbies to the group.

I also eat lots of corn tortillas, w/ three ingredients (stone ground corn flour, water, trace of lime - where is the gluten in that?), a staple of my diet, and that of many celiacs. And I agree w/ Richard, I have not found a shredded cheese that contains flour as anti-caking. I could go on and on with my list of things....you get the point.

But will she? Maybe you should print out this thread and hand it to her. At the end of the meeting, of course.

I could not have said it better myself, and unfortunately I don't always have the gift of words, so things don't come accross as I often intend them, but I try really hard to be objective and not to judge. I even said to her "Well there are some things that aren't labeled Gluten Free that don't have gluten" and she said "No their aren't" and changed the subject. I'm still going to the meeting, but I'm not sure I'll go to next months lol!!

[Judyin Philly]

CAN'T WAIT TO HEAR HOW THE MEETING WENT.

GO AND FIND SOMEONE WHO IS SMILING AND HAVING A GOOD TIME AND SIT WITH THEM.

JUDY