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Local Celiac Support Group's Leader Makes Me Nervous!


Electra

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DingoGirl Enthusiast
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.

oh dear.....them's fighting words.....I would get in LOTS of trouble in this group....... :P Maybe even get kicked out.....


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Electra Enthusiast
oh dear.....them's fighting words.....I would get in LOTS of trouble in this group....... :P Maybe even get kicked out.....

LOL but my problem is that I have a little avoidance personality disorder (that has been caused by my medical condition no doubt) but I have a really hard time speaking my mind when I'm face to face with people. That is one of the things I'm hoping I can change when I'm feeling better :-)!!

dlp252 Apprentice
oh dear.....them's fighting words.....I would get in LOTS of trouble in this group....... :P Maybe even get kicked out.....

But you'd have so much fun doing so. :lol:

Fiddle-Faddle Community Regular
oh dear.....them's fighting words.....I would get in LOTS of trouble in this group....... :P Maybe even get kicked out.....

Oh, me, too! Me, too! I'd be waving a carton of eggs , a red pepper, and a bag of spinach and saying innocently, "Oh, no--these aren't marked gluten-free--THEY MUST HAVE GLUTEN!!!! AAAGGGGHHH!!!!"

This woman obviously has something up her butt.

You could pull the classic husband-ly "Yes, dear. Yes, dear," and then go eat what you think is good.

Fiddle-Faddle Community Regular

Wow--Susan, Donna, can you imagine what it would be like if the three of us showed up at this group????

:lol::lol::lol::lol::lol::lol::lol::lol:

Electra Enthusiast
Wow--Susan, Donna, can you imagine what it would be like if the three of us showed up at this group????

:lol::lol::lol::lol::lol::lol::lol::lol:

common down ladies. I need a web cam so we can be at the meeting together lol!!

Viola 1 Rookie
:lol::lol: Too bad we couldn't all go as a group :lol: Wouldn't we create havoc!

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Fiddle-Faddle Community Regular
This woman obviously has something up her butt.

Maybe she's just constipated.

Rusla Enthusiast

If I waited for everything up here to say"wheat/gluten-free" I would not be eating and that includes potatoes and rice noodles.

First of all for Canadians you should know Black Diamond Cheeses do contain gluten as I talked to the company. I stick with Kraft because they list everything. As for fruits and vegetables they wax and crap they spray on them has been reported as containing gluten.

As I am paying a fortune for my food as it is I decided to continue with the trend and buy organic for health's sake. They taste better also organic and when I can I buy fresh from the organic growers.

Viola 1 Rookie

B.C. fruit..even the waxed stuff is gluten free. But we have our own fruit trees, so buy very little fruit. Having said that, organic isn't in the budget :( even for what we have to buy.

Thanks Rusla for the information on Black Diamond cheese! :o I didn't know that. I've always bought Kraft anyway, but nice to know if I ever get in a store that doesn't have Kraft handy.

DingoGirl Enthusiast
LOL but my problem is that I have a little avoidance personality disorder (that has been caused by my medical condition no doubt) but I have a really hard time speaking my mind when I'm face to face with people. That is one of the things I'm hoping I can change when I'm feeling better :-)!!

Angie, I DO think that this will improve the longer you're gluten-free, as it has for me. (of course, I could actually USE a little of that disorder in my own personality :ph34r: .....I have no trouble speaking my mind....but I HAVE noticed the reverse - - I am much calmer and don't need to assert myself as often. :))

But you'd have so much fun doing so. :lol:

yup. ;)

Oh, me, too! Me, too! I'd be waving a carton of eggs , a red pepper, and a bag of spinach and saying innocently, "Oh, no--these aren't marked gluten-free--THEY MUST HAVE GLUTEN!!!! AAAGGGGHHH!!!!"

This woman obviously has something up her butt.

Yes, Alison, wave away with your non-labelled items! :lol: The woman sounds like an eejit, clearly.

Wow--Susan, Donna, can you imagine what it would be like if the three of us showed up at this group????

oh dear.......oh dear......... :lol:

It's just sad that she'll be the "educator" in this group, and people WOULD starve if they ate only foods labelled gluten-free.

Angie, I would say, go and observe, maybe take some printed materials to give her, and when you're healthier and emboldened, a few months down the line, go again.......

It would be fun to go as a group, though....;)

Fiddle-Faddle Community Regular
The woman sounds like an eejit, clearly.

ummm...what's an eejit? :blink:

Rusla Enthusiast

Well Shirley, I can't afford organic monetarily speaking but physically I have to sobe it. You are lucky, you have fruit trees and stuff like that. I need to live in Jamaica or the Bahama's with Johnny Depp, they have real fruit trees, unsprayed and they taste like fruit. Not like the crap you find in Safeway.

For all the American's I am so jealous you have Trader Joes.

2Boys4Me Enthusiast
ummm...what's an eejit? :blink:

In Britian referred to as an "idgit" or in technical terms an "I D 10 T" or for the layperson "idiot".

Felidae Enthusiast
First of all for Canadians you should know Black Diamond Cheeses do contain gluten as I talked to the company. I stick with Kraft because they list everything. As for fruits and vegetables they wax and crap they spray on them has been reported as containing gluten.

Also, for Canadians. I contacted Parmalat a while back and they said that they will not guarantee any of their products to be gluten free, not even their milk.

lovegrov Collaborator

"However, it seems obvious that a HUGE percentage of celiacs have other food allergies/issues as well."

Obvious based on what? Remember that folks who frequent celiac forums are not representative of the general celiac population. Most have more physical problems than the average person with celiac and many are more sensitive to gluten than average. The majority who come to the forums early on in the gluten-free diet leave or simply lurk after adapting, meaning only a small percetage are "veterans." And the forums are overwhelmingly female. I don't say that disparingly in any way; it's just a fact.

I don't believe, based on my experience, that a HUGE percentage of people with celiac have other food allergies, but if you know of some studies proving otherwise I'd be glad to read them. I do know some people have dairy problems (and a large number do not), but that often disappears after going gluten-free.

richard

lovegrov Collaborator

I'm curious if Black Diamond said their cheese does have gluten, or was it just the CYA, "we won't guarantee." I ask because I just looked at their web site and didn't find a cheese with gluten in the ingredients. And the shredded cheeses use cellulose for anti-caking.

richard

lovegrov Collaborator

deleted

Fiddle-Faddle Community Regular
"However, it seems obvious that a HUGE percentage of celiacs have other food allergies/issues as well."

Obvious based on what? Remember that folks who frequent celiac forums are not representative of the general celiac population. Most have more physical problems than the average person with celiac and many are more sensitive to gluten than average. The majority who come to the forums early on in the gluten-free diet leave or simply lurk after adapting, meaning only a small percetage are "veterans." And the forums are overwhelmingly female. I don't say that disparingly in any way; it's just a fact.

I don't believe, based on my experience, that a HUGE percentage of people with celiac have other food allergies, but if you know of some studies proving otherwise I'd be glad to read them. I do know some people have dairy problems (and a large number do not), but that often disappears after going gluten-free.

richard

Good heavens, Richard, you think that I am wrong because I am not basing my observations/experience on official studies; yet you insist you are right based on your observations/experience--you're not quoting any studies to back up anything you are saying!

YOU CAN'T HAVE IT BOTH WAYS.

dlp252 Apprentice
Wow--Susan, Donna, can you imagine what it would be like if the three of us showed up at this group????

:lol::lol::lol::lol::lol::lol::lol::lol:

:lol: indeed!

lovegrov Collaborator
Also, for Canadians. I contacted Parmalat a while back and they said that they will not guarantee any of their products to be gluten free, not even their milk.

No matter what they say, their milk is gluten-free. However I wouldn't drink just because of their attitude.

richard

ravenwoodglass Mentor
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

Thanks for this, I have been glutened by store brand cheeses. I just didn't feel comfortable saying so without a link to prove it. Thanks

Electra Enthusiast

This is the kind of luck I always have UG!! My MIL usually watches the kids for me and she can't do it tonight. There is a slight possibility that hubby will get out of work on time, but I won't know for sure until it's time to leave!!

I also got our new mattress today that we've waited over a week for and they went to set it up and the bed frame we bought does not have all the pieces so I may have to drive 45 min to get that piece and I was suppose to get FREE sheets with my bed because I don't have any in that size yet, and they forgot to send those too so I have to get to them all before they all close UG!!

I swear they could make a soap opera out of my bad luck ;-)!! I could take reality TV to the next realm hehe!!

Fiddle-Faddle Community Regular

Too bad we can't all go with you and yell at them for screwing up your bed!!!!

happygirl Collaborator

Angie,

I'm sorry you won't be able to go! Maybe next month.

In terms of managing the board --- this thread probably would have been better suited to the thread that it was referencing...otherwise people might not know what you are talking about! Often, related ideas are kept together in the thread for this reason.

Laura

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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