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Rant On What Gluten Free Really Means...


NorthernElf

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NorthernElf Enthusiast

Hurting in Nashville right now. Ugh - did my research, looking for gluten-free places to eat. We bought a styrofoam cooler for the room and keep it full of fresh ice to keep eating safe but it's nice to eat one meal out a day. Well...I no longer believe in gluten free menus ! I don't trust anywhere !

Went to a place called the Mellow Mushroom because it had gluten free dough - not the bistro I thought it was but a pizza place. Decided not to try pizza with gluten free dough in a place that likely has a kitchen, pans and all, covered with wheat. Did have a lovely dressing free greek salad though (with no bad effects).

Tried the Old Spaghetti Factory - they serve gluten free pasta. Had some noodles with marinara and meat sauce - all off their gluten free menu. What a night - spent in stomach spasms & nausea. Two pepto bismol in the morning, which helped for a couple of hours, and then more nausea and distress - and not much eating. Seems to me when I'm glutened eating anything is a bad idea! Don't know what they did - used the same colanders ? bowls ?

So what is gluten free ????? Is this trending ?!? Places seem to throw that on the menu or have a gluten-free menu but it doesn't mean much. I saw crackers the other day that had gluten free on the label...and made in a factory that processes wheat products written in the fine print. Ugh.

Ok, so I'm frustrated and hurting a bit right now. Had a salad with my own dressing and some cooked shrimp from a local market last night and that threw everything all off again - wouldn't take much at this point but there had to be something there to start it all again. Tonight I think I'll have canned tuna & crackers !

Guess we're all just safest at home.


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chasbari Apprentice

Trending... I bet. And all those "well meaning" entrepreneurs who are selling gluten free whole grain sprouted breads and spelt breads and other supposedly gluten free products ... it's a buzz word for the uninitiated. The aisles filled with boxes labeled as gluten free crammed right there next to the whole grain "health foods" in the local supermarket just give more ammo to the dangerous but well intentioned friends who decide to do a favor and pick something up for you and get offended when you have to try to explain why you can't eat it even though it says gluten free. Home, sweet home. Oh, careful of the soy in that canned tuna if that's a problem for you.

Palindrome Newbie

Ah, Nashville is my Celiac Heaven of Tennessee.

I remember the first place I ever ate out as a Celiac was Old Spaghetti Factory. It was pretty close to diagnosis, so I was still pretty sick, but I don't think they glutened me. I've learned something when you go out to eat, though. If you just order something off the gluten-free menu, they'll kind of shrug off the 'Oh, be careful.' I always pull the waiter to the side and explain to them that it's not a personal choice to be gluten free, but I get very very sick. So far I haven't had any trouble with any of the places I've done this with.

I've ate at P.F. Changs down towards Centennial Park in Nashville quite a few times, and I've never been sick from there. Their staff is well educated on the whole thing, so it's quite comforting. I could eat the Chicken Fried Rice by the truckloads. :)

I know everything is quite frustrating, but I guess some people just don't understand that we're not a trend. :P

GlutenFreeManna Rising Star

I'm at the point where I won't eat someplace without asking questions of the chef or manager first. If they seem to know what they are doing then I will order off their gluten-free menu, but if I ask questions about cross contamination and they have no idea what I'm talking about then I know to go elsewhere. So far I have avoided well-intentioned friends buying/preparing "gluten free" items for me to eat in their gluten-containing homes. I just insist on bringing my own food and tell them please don't make me anything special. I think many people do think this is some kind of fad diet though, which is sad because it's a very serious medical condition for most.

Juliebove Rising Star

We've gotten gluten free pasta many times at the Old Spaghetti Factory here. The only problems we've had were extremely slow service. Once they not only comped our meal but gave us gift certificates for the next time. That meal took 2 hours to get.

The last time we were in, I was suspicous because the pasta looked different. They used to use a corn pasta but they changed it to something else. I can't remember what. I did not like it as well. Not that I really liked the corn pasta all that well. Because I didn't. It was fine though. Edible. And didn't make me sick.

One waitress that we got a lot assured us that our meal would be prepared in separate pots in a separate part of the kitchen. However now that I think about it, they could have used old pots or utensils that had gluten in them prior.

Also the last time we were there, we got croutons on our salads. I had not bothered to ask for none because for at least a couple of years they did not even offer croutons! And they always bring bread. That could be a problem. We tend to eat there with my parents and they do eat the bread. Once a crumb flew in my mouth as my dad was cutting it. Luckily gluten isn't the issue for me, but it is for my daughter. I have noticed there are crumbs everywhere though. I don't think they clean very well.

summerteeth Enthusiast

I so sympathize with you! About a year ago, my fiance, my sister and I went to a family-owned Italian restaurant here in Rockford. Been around here forever. They are the only restaurant around that offers gluten free pasta. Of course I was intrigued. So I order it. I got so sick afterwards that I couldn't leave my house because of, um... embarrassment I was not willing to go through at work, if ya catch my drift :ph34r:

So I called the restaurant. They gave me some BS about how busy their kitchen is, they can't actually certify it, blah blah blah... NEVER AGAIN. I give their store front a one finger salute every time I drive by now. That much pain.

Harley9999 Newbie

[

So what is gluten free ????? Is this trending ?!? Places seem to throw that on the menu or have a gluten-free menu but it doesn't mean much. I saw crackers the other day that had gluten free on the label...and made in a factory that processes wheat products written in the fine print. Ugh.

I have found that some places label things gluten free meaning they contain no wheat but there are lots of other things that they can and do use. Carmel color bothers me terrible and if you read labels that is in alot of things.... I think before someone slaps a gluten-free label on something.... they should know all the facts!! Hope you are feeling better soon :)

~H


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psawyer Proficient

Carmel color bothers me terrible and if you read labels that is in alot of things....

Caramel color is one of those celiac urban myths that just won't go away.

Here is Shelley Case's take on it, from Gluten-Free Diet A Comprehensive Resource Guide:

Although gluten-containing ingredients (barley malt syrup and starch hydrolysates) can be used in the production of caramel color, North American companies use corn as it has a longer shelf life and makes a superior product. European companies use glucose derived from wheat starch, however caramel color is highly processed and contains no gluten.
[Emphasis in original]

You may have a reaction to it, and I don't doubt that you do, but what you are reacting to is not gluten.

Harley9999 Newbie

Caramel color is one of those celiac urban myths that just won't go away.

Here is Shelley Case's take on it, from Gluten-Free Diet A Comprehensive Resource Guide:

[Emphasis in original]

You may have a reaction to it, and I don't doubt that you do, but what you are reacting to is not gluten.

So what you are saying is Carmel Color IS safe to eat from a Celiac perspective? I thought it was a taboo and I ate something twice and got sick and the only culprit was carmel.. :)

psawyer Proficient

So what you are saying is Carmel Color IS safe to eat from a Celiac perspective? I thought it was a taboo and I ate something twice and got sick and the only culprit was carmel.. :)

Yes, that is what Shelley Case is saying, and I agree with her. Caramel color is gluten-free, regardless of the source of the sugar from which it is made.

Many people with celiac disease also have other food intolerances in addition to gluten, and reaction to pigments is not unheard of.

Takala Enthusiast

Bummer. :huh::angry:

I think there is a bit of a higher probability of screw up in places that normally have a menu that specializes in cooked wheat, as opposed to ethnic cuisines that are more rice oriented, like Thai, so I tend to avoid them. One of my most spectacular glutenings was at an Italian restaurant, where I did not get pasta. Aie yee yee. On the other hand, we recently ate at an Italian pizza restaurant chain in CA that now has a gluten free pizza, (the crust is from across the country) and I had no problem. I have eaten there several times, ( not wanting to jinx myself here, and still no problem.) We tried another pizza chain with the gluten free option, (imported crust from the east coast again) and that also worked. I think the trick is to eat where you suspect there are other celiacs hanging around as locals. The pizza place was near a frozen yogurt shop that had a notebook on the counter with all the ingredients listed. This is like, whoa, very intriguing, and indicates they get a lot of those health conscious people asking what is in the stuff. I tried the frozen yogurt, after the usual study- inquiry, which I almost never do, and had no problem. Several hours later, I then try the pizza place next door. I know from the demographics of the area I was more likely in a place where they were going to have us types dropping by. I refer to it as the happy intersection of Oriental meets Northern European.

We had a really good, authentic Japanese sushi place in town, that knew us and that I never had a problem with, and they closed last year. The trendy stuff on the sushi menus at the popular places is now all sauce, sauce, sauce..... all over these little fake crab rolls.... yuck. Bleah. Who knows what is going on back there in the kitchen. I am not trying to be snide, but the middle American midwestern/western German ancestry gravy- sauce casserole demographic has moved into the town, en force, along with the fast food chains, and the cuisine is suffering, other than the Thai place is a refuge of rice cooking and authentic seasonings - so far. They also have the dreadful "country cooking" type of restaurants that take eggs and somehow still there is gravy on every item. I've tried them, explaining I have food allergies, I cannot have wheat gluten at all, (almost no body understands "auto immune reaction" so I don't use that) I would just like plain eggs, bacon, vegetables, no butter (NEVER EAT RESTAURANT BUTTER unless you are talking to the chef and have extracted a promise that it really is butter that is not contaminated) no wheat rye barley no gluten, no homefries no communal basket frying, own clean pan, no sauce, no biscuits, etc, and I think we have gotten it settled and they will ask..... do I want wheat toast or white toast with that. :blink:

me: I can't have the toast, thanks. None. It has wheat in it.

waitress: how about the white toast. or some biscuits.

me. (oh, my, God, I'm thinking) No toast, thanks. No wheat.

waitress: how about some potato bread ? Can you eat that ?

me. No thanks. NO bread at all.

husband: (dropping his voice into that Sound of Authority) She can't eat any bread at all. She gets sick. She's allergic. (technically, I'm not, but this usually perks their attention more closely)

waitress: Oh, okay!

I can go to a mom and pop un- chain and get a safer breakfast than at one of those types of places.

Skylark Collaborator

"You can't have the sandwiches but you can have the pasta salad."

"Oh, really? What are the noodles made of?"

"Flour."

"And what is the flour made of?"

"... Oh. I guess you can't have that either."

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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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