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"But You Can Eat Whole Wheat, Right?"
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I liked when I went into starbucks right by me and explained that I couldn't have gluten, and I wanted a carmel apple cider. Could they help me look at the ingredients and determine if it was safe? She picks up the bottle of carmel sauce and reads off the ingredients, and pauses after "natural and artificial flavors." "Well, natural flavors are at least ok!" she offers brightly. "Wheat is very natural." I respond back just as brightly (and slightly sarcasticly). I settled for a cup of tea.

im new to the 100% gluten free... question- do we ALWAYS have to avoid "natural flavors" & "artificial flavors" ?? it's EVERYWHERE :( still confused on that one.

and.. LOVE David Sedaris :D

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im new to the 100% gluten free... question- do we ALWAYS have to avoid "natural flavors" & "artificial flavors" ?? it's EVERYWHERE :( still confused on that one.

and.. LOVE David Sedaris :D

Artifical flavors are not ususally a concern. I always check with natural flavors to be on the safe side.

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Turns out the syrups (at that time) at Starbucks were ok. But now thier frappaccinos are no longer safe. At least the regular ones, not sure about the light, but the risk of CC there? Scary! I ban them now on principle.

Shelly Case's book, Gluten Free Diet, is an amazing resource for questions on ingredients, grains, nutrition, and quite frankly, sanity. My support group was lucky enough to have her come in and speak to us, which happened to be when I was about 4 months post diagnoses. After that, I felt like I could handle this. (she's on facebook too)

And yes, David Sedaris is GREAT!!! :P

I LOVE this thread!

-Daisy

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While "natural flavors" can contain gluten, they very rarely actually do. The most likely source would be barley malt, and that is a relatively expensive ingredient, so it is usually explicitly declared as "malt flavor."

If there were wheat in it, in the US it would be required by law to be disclosed as just that, "wheat."

Shelly Case on flavorings:

It would be rare to find a "natural or artificial flavoring" containing gluten (a) because hydrolyzed wheat protein cannot be hidden under the term "flavor." and (B) barley malt extract is almost always declared as "barley malt extract" or "barley malt flavoring." For this reason, most experts do not restrict natural and artificial flavorings in the gluten-free diet.

Gluten-Free Diet - A Comprehensive Resource Guide, published 2008, page 46

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thanku everyone for the info!

daisy- i called Starbucks recently- the LIGHT frapps have Gluten in the ingredients.... the REG frapps do not- BUT she said: "made in a facility that also processes wheat"-

i got a green tea frap yesterday... but cant always digest milk... was not a good idea :(

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thanku everyone for the info!

daisy- i called Starbucks recently- the LIGHT frapps have Gluten in the ingredients.... the REG frapps do not- BUT she said: "made in a facility that also processes wheat"-

i got a green tea frap yesterday... but cant always digest milk... was not a good idea :(

Even if the regular frapps were processed in a gluten free facility I would recommend avoiding them. I used to work at a coffee house and we did not wash the blenders thoroughly in between customers. We just rinsed them well and went on to the next drink. So if the person before you got a LIGHT Frapp and you got regular, there could be residue from the light frapp still in the blender blades or any scratches in the plastic blender base.

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These are great LOL.

The one that upset me the most was when we were at Football. I bring my own food. Usually tuna or watermelon, my trusty rice crisps.... Ok so the coaches wife looks at me and says.."Everytime I see you, your eating something!" It really hurt my feelings. What I typically do is feed the family then bring my own fruit and crackers to the practice. What is funny is she is twice my size and she is talking to ME about overeating? I asked her if she actually paid attention to what I am eating which is all healthy stuff.

Others...

I asked about gluten in something and after much reading, I was told yes, it had gluten because it had 'corn syrup' in it.

Went to marble slab and asked if the SF yogurt had gluten or gluten containing fillers. "No mam, it's sugar free." I said..."sugar is not wheat" and he responded..."oh well umm, whats that?"

Ok never mind lol. And Marble slab is supposed to hae a gluten-free list. Even the manager had no clue what I was talking about.

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I just read the above post about eggs not being dairy too and was asking myself this same question! I won't think of eggs as dairy anymore though, now that I have a visual of a big cow laying an egg.... It's funny. I don't even know why I thought eggs were dairy. :blink: At least I know that wheat is wheat, and bread is made of wheat!

I'm going to go ahead and blame it on the vegans, (don't eat dairy, eggs, wear wool...) and really, who eats eggs without some dairy in them... the two belong together...

I was vegan for a VERY brief while and was often asked if I could wear cotton. My responses generally involved a lot of blink and a slow smile while I waited for them to figure it out...and often they didn't. :blink:

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I think this is the reason people roll their eyes :rolleyes: , when other people have carried things to ignorant extremes and screwed up the pitch for the rest of us who do, perhaps, know what we are talking about. To not wear wool when it is shorn from a sheep which does not hurt it at all (and which incidentally needs to get rid of all that wool), or for people to think that we shouldn't pick the cotton.... it just doesn't even bear thinking about. But I do like the cows laying eggs analogy :lol: . Now if you really want to be an ovolactovegetarian, go ahead, but let's keep things straight; you can even be a pescatarian if that's what floats your boat, but does a pescatarian wear wool??? :blink: I can see not wearing fish scales or chicken feathers - but do you have to rest your head on a polyester pillow?

Sorry, it is late at night and the brain tends to run away a little...... Hope I have not offended anyone with these ramblings. Not intended.

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I was wondering about a store sample once. It was yogurt on which they put granola. The yogurt was gluten-free, but the granola wasn't. The guy said that it couldn't contain gluten because it was organic. Then I pointed out the wheat on the label. Then he told me that the gluten wouldn't harm me because it hadn't developed. Why would someone say something like that? What if I had listened to him and ate it anyway?

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I was wondering about a store sample once. It was yogurt on which they put granola. The yogurt was gluten-free, but the granola wasn't. The guy said that it couldn't contain gluten because it was organic. Then I pointed out the wheat on the label. Then he told me that the gluten wouldn't harm me because it hadn't developed. Why would someone say something like that? What if I had listened to him and ate it anyway?

In my experience, the people handing out samples usually don't have a clue what they're handing out beyond the name of the product, a couple of descriptions of the taste, and basic prep instructions. Likely that guy had never heard of gluten before you brought it up and probably assumed it was an artificial additive. I'm betting his manager would have been just as clueless. *sigh* Why are such ignorant people allowed to control our food supply?

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I have a couple of ones that make the eyes roll every time.

My co workers and hubby's co workers, "that must be awful, I couldn't live without bread." or "must be hard to find something to eat"

Family members, "once you are better you can eat bread again right?"

Gets tiring telling people what I eat. Rice, potato, veg, steak, prawns, chicken etc. They are amazed that it is gluten free.

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These are great LOL.

The one that upset me the most was when we were at Football. I bring my own food. Usually tuna or watermelon, my trusty rice crisps.... Ok so the coaches wife looks at me and says.."Everytime I see you, your eating something!"

some people are so insensitive! after years spent not eating ever, I think I would say, 'thank you. and how are you doing on YOUR diet?' and look very concerned :) probly hard to do with a straight face :D

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some people are so insensitive! after years spent not eating ever, I think I would say, 'thank you. and how are you doing on YOUR diet?' and look very concerned :) probly hard to do with a straight face :D

After the description of the aforementioned person I think that is a perfect response. :D

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I went to IHOP with a friend who is supposed to be on a gluten-free/cf diet for her daughter, who has mild Autism and is still nursing. On the way there we were talking about the evils of wheat and I showed her the DH breakout I was having on my arm on the way to our table. The waitress saw it and said OMG what's wrong? I told her it was an allergic reaction to wheat. "Well I guess you shouldn't eat the whole wheat pancakes!"

Then the kicker! My friend asks the waitress, "Do the regular pancakes have ww flour in them or just white flour?" I jokingly reminded her that white flour has wheat in it too, and she said "Oh really? OMG I didn't even think about that." She then ordered and ate pancakes.

We also had a brief discussion about hidden wheat (IHOP uses pancake mix in their scrambled eggs to make them fluffy) and cross contamination, which she'd never heard of.

To her credit, her daughter is doing much better on the diet even with the apparent occasional wheat exposure. :)

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I walked into Sephora to read some labels on products I had at home but no longer had the packaging for. Unfortunately the print was so small I couldn't read the ingredients anyways. :(

Knowing I would probably not get accurate information I asked the manager which of the products were gluten free. I was curious how the question would be handled and if there would be a modicum of accurate information dispensed. Without acknowledging me or looking up from her task she said, all of the X items (I forget the brand she said) are all natural and therefore gluten free. I turned and walked out of the store.

I have since bought a credit card shaped magnifying 'glass' that fits in my wallet so I can read the small print myself.

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I walked into Sephora ...Without acknowledging me or looking up from her task she said, all of the X items (I forget the brand she said) are all natural and therefore gluten free. I turned and walked out of the store. I have since bought a credit card shaped magnifying 'glass' that fits in my wallet so I can read the small print myself.

This just irks me! In this economy, the fact that stores like Sephora are even still alive is amazing to me! They are expensive, and then to add bad service on top....who would buy their stuff? I feel like bad customer service is like a disease lately in retail. I am a struggling new teacher, who can't find a job in this terrible economy. The school districts are laying off teachers and increasing class sizes, not taking a chance on a fresh newly minted excited history teacher who is ready to school the teenagers of the United States with the utmost enthusiasm. The fact that anyone has a job is something to celebrate! I don't know, that's just my two cents. :0)

I'm sorry you had this experience. I too have learned to just help myself in any retail environment. Asking for help is simply not going to get you anywhere. Of course, if I could afford to shop at places like Nordstroms, perhaps someone would kiss my booty and help me, but I can't afford that, so I have to stick to the Ross and Target's of the world! This turned into a rant. Sorry ... LOL! I'm not usually this negative, I swear!

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The one that upset me the most was when we were at Football. I bring my own food. Usually tuna or watermelon, my trusty rice crisps.... Ok so the coaches wife looks at me and says.."Everytime I see you, your eating something!" It really hurt my feelings.

Well you're probably making her feel guilty eating her unhealthy donuts and hotdogs :P I find a lot of hurtful comments are from people feeling insecure about their own dietary choices and perhaps lack of willpower in cutting down on the carbs ;)

Don't feel bad, I bring a lunchbox to work and snack the *whole* day, I'm continuously hungry nowadays. Beats having zero appetite pre-gluten-free! :D

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Here's one from my neighbor's mom:

Her: Oh here's a sandwich for your little girl(who is gluten-intolerant, not sure if she has celiac).

Me: Oh no thanks she can't have wheat. She's allergic(I say that because it's easier to understand, or so I thought).

Her: Oh it's ok this got no wheat.

Me: yes it does.

Her: It's bread, no wheat.

Me: Ummm(trying to be polite), wheat is in the bread! The flour used is wheat, unless it says gluten-free.

So then her eyes glazed over. Probably no clue what gluten is).

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I was wondering about a store sample once. It was yogurt on which they put granola. The yogurt was gluten-free, but the granola wasn't. The guy said that it couldn't contain gluten because it was organic. Then I pointed out the wheat on the label. Then he told me that the gluten wouldn't harm me because it hadn't developed. Why would someone say something like that? What if I had listened to him and ate it anyway?

I was told by a celiac health food owner that sprouted wheat was okay. Why? It was sprouted so it was now something else. This was when my daughter was first diagnosed. I bought something with sprouted wheat. Can't remember now if it was tortillas or bread. Soon after eating the stuff, daughter got sick.

The Dr. who diagnosed her actually told me to give her spelt instead of wheat. Same thing happened. She got sick! I now know that not only is spelt a form of wheat but that she is allergic to both things.

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I have a couple of ones that make the eyes roll every time.

My co workers and hubby's co workers, "that must be awful, I couldn't live without bread." or "must be hard to find something to eat"

Family members, "once you are better you can eat bread again right?"

Gets tiring telling people what I eat. Rice, potato, veg, steak, prawns, chicken etc. They are amazed that it is gluten free.

The other day on one of the newsgroups I frequent, a woman who always acts like she is an expert on everything said that celiac can go away. I asked her for a cite. As I thought, she posted no cite. I don't think there is one.

But I too get sick of the comments about "What *can* you eat?" Or, "I could never follow that diet!"

I can remember getting upset when daughter was first diagnosed. She had two back to back dance recitals to be in with about an hour break in between. At that point we hadn't yet found a gluten-free bread that she liked. Or really even found good meals that she liked. I commented to one of the other mothers that I didn't know what I could bring her for lunch. She told me that they just sent out for pizza. When I told her she couldn't eat pizza because she was allergic to wheat, gluten and dairy, she replied... "Couldn't you make an exception just this once?"

I then replied to her... "Yeah. If I don't want her to dance. Cuz if I did that she'd spend the next hour or more in the bathroom getting sick!" I later found out that this person is a kindergarten teacher. Scary!

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I went in one of those "discount" hair care products store to find a new shampoo. The company of the shampoo had sent me some suggestions but I wanted to read the ingredients just to be sure. The price tag was stuck on the ingredients on every bottle. I got a manager and said I needed to read the ingredients to see if I could have it. Asked me what I couldn't have and I said wheat. She pulled the sticker off, read it in her head and said, " this should be fine. No wheat.". And started to take it to the register for me to pay. I said I wanted to look at the ingredients and she looked at me like I was nuts. The shampoo was fine buy still... I have been in stores where they will read the ingredients out loud so I can make a decision.

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This just irks me! In this economy, the fact that stores like Sephora are even still alive is amazing to me! They are expensive, and then to add bad service on top....who would buy their stuff?

I've only been to Sephora once, but the gal working asked my dd if she wanted to try some makeup on. I told her no, because of gluten, blah, blah, blah... She said, "Oh, let me show you all the gluten-free stuff we have!" I was shocked! Her SIL happened to have celiac as well, so she knew everything about all the products, and dd was more than happy to be her guinea pig ;) Soooooo, if you're ever at the Vancouver (Washington) mall, check it out :)

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I've only been to Sephora once, but the gal working asked my dd if she wanted to try some makeup on. I told her no, because of gluten, blah, blah, blah... She said, "Oh, let me show you all the gluten-free stuff we have!" I was shocked! Her SIL happened to have celiac as well, so she knew everything about all the products, and dd was more than happy to be her guinea pig ;) Soooooo, if you're ever at the Vancouver (Washington) mall, check it out :)

So glad you had a good experience! I have noticed that you will find the occasional "island" where someone has a "friend, family member, etc" who has Celiac. I got very lucky and my DOCTOR was one of those rare islands! His daughter has Celiac, so instead of knowing little and/or being ignorant on the subject, he had a wealth of information! He went into this whole thing about how they were about to go on vacation in Hawaii, and he and his wife had been calling around to local restaurants to see if they can accommodate gluten free! I mean, this guy knew his stuff! I love my doctor! Yay me! But unfortunately, more often than not, I get the deer in the headlights look when I say gluten free or allergic to wheat. Hopefully all of the press that the Clinton daughter is giving the disease will bring it into the spotlight. Fingers crossed. :)

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I love Sephora! Just went this week for a gluten-free lip gloss. (As well as paraben-free, sulfate-free, petro-chemical-free, fragrance-free, free of pthalates, no GMO's, no PPG's, no MEA, DEA, TEA's, formaldehyde-free, and triclosan-free.)

Got some natural deodorant too. :)

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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