Gripe About The Media

[Streetlegal]

I just wanted to get this off my chest:

I am kind of irritated and fed up with articles that begin "you can't avoid seeing all that gluten free food around--what is it?" or "with all the publicity it is getting, all those Hollywood starts trying out the gluten free diet, what is it?"

First off--I wish there were gluten-free food everywhere. But 99% of the restaurants I try in the Bay Area are clueless; yes they have improved, but, at least where I live, the apparent "hype" has not hit home. Even restaurants I read about online as being gluten-aware end up not having a clue once I get there.

Second--labeling of food in groceries still sucks. I still have to read the small print on my roasted chicken to make sure it is gluten-free (having to turn the damn thing upside down in the process), I still have to pick up and read most products carefully.

Third--who the hell are all these Hollywood stars?

It seems to me the actual hype is not so much about the extent of gluten-related conditions, as about the actual knowledge and availability of products.

There, I feel a little better.

[Lisa]

I just wanted to get this off my chest:

I am kind of irritated and fed up with articles that begin "you can't avoid seeing all that gluten free food around--what is it?" or "with all the publicity it is getting, all those Hollywood starts trying out the gluten free diet, what is it?"

First off--I wish there were gluten-free food everywhere. But 99% of the restaurants I try in the Bay Area are clueless; yes they have improved, but, at least where I live, the apparent "hype" has not hit home. Even restaurants I read about online as being gluten-aware end up not having a clue once I get there.

Second--labeling of food in groceries still sucks. I still have to read the small print on my roasted chicken to make sure it is gluten-free (having to turn the damn thing upside down in the process), I still have to pick up and read most products carefully.

Third--who the hell are all these Hollywood stars?

It seems to me the actual hype is not so much about the extent of gluten-related conditions, as about the actual knowledge and availability of products.

There, I feel a little better.

Sorry that you feel the need to vent, but it looks like you have it pretty good. Below is a link to restaurants in your area which are gluten friendly. You have more options than most.

Open Original Shared Link

I have been gluten free since 2004, and I have seen tremendous progress in products and awareness. And, I'm tremendously grateful.

[Megaroni]

I set up an account just so I could respond to this!!

I've only been gluten-free for about six weeks, after neither a blood test or endoscopy pointed to a concrete answer. It's taken a while, but now I'm feeling a lot better.

Already, though, I've gotten frustrated with the coverage! One of my first weeks I had dinner out with a friend who was in town--the restaurant was great and we made a few tweaks to the meal. Someone else at the bar later asked me how my food was, and I raved about it, though noting my salmon couldn't have the breading they use. This stranger then proceeded to ask me whether I really needed to be gluten free, or if it was just for a diet. He wasn't being snotty about it, just curious, but it was such an odd question from a stranger. gluten-free can be so restrictive, I barely know anyone who does it just for fun! And people who only "cut back" on their gluten because of using it as a fad diet drive me nuts, because then other people think even gluten intolerant folks can have a little. Athletes in particular seem to be doing this as a fad a lot, and that can really hurt people who NEED to care about it.

There's been a lot of media coverage this week based on a new journal article, and everyone I know has been sending it to me, saying maybe I'm really not gluten intolerant--based on this report saying that a lot of people with Celiac symptoms don't actually have Celiac but other problems. I get that they want to be helpful, but this is a discussion my doctor and I have already had. I'm gonna go with the MD over the reporter.

So. Thanks for venting, because I needed it too! It's been a stressful six weeks of reading labels and journal articles so far, but I'm committed. You're not alone in your frustration!

[Lisa]

No, it's not well understood in the mass media, that's for certain.

The Today show did a great segment with Joy Baurer, to correct the misinformation from Dr. Nancy Snyderman, just a week earlier. It's a slow crawl forward though.

I think what gets attention is "the gluten free DIET", which lumps it in with the vastness or weight loss diets. Or perhaps the diet du jour.

Gluten free products generate a great deal of sales. So someone is listening, regardless of the need.

[squirmingitch]

I'm not trying to argue with you Lisa because I agree that there is so much more gluten-free food out there today than even a year ago but I get peeved at all the stuff labeled gluten free when it really isn't. It isn't tested, it is produced on shared equipment & so on & so forth. It's misleading. People keep sarong to me there are so many gluten-free products in the stores now (all excitedly) like it's really easy for me to find all kinds of stuff to eat. As if I don't have to eat any differently then I ever did; all I have to do is go to the grocery store & like magic I can walk out with everything I used to eat only now it's made gluten-free.

These people are getting this idea from all the hype as well as from all the "mislabeled" gluten-free products. We constantly read posts on here where someone has been glutened from a product that was supposedly gluten-free only it was cc'd so it isn't gluten-free.

And that was my venting for the day. Sometimes you just gotta do it!

[tom]

...... I still have to read the small print on my roasted chicken to make sure it is gluten-free (having to turn the damn thing upside down in the process), ...

I'm in the bay area too, San Jose here, & had to chuckle at having done this last week w/ a

potentially-drippy roast chicken container at Safeway. They had a new (to me) All Natural one.

Realizing the ingred list was on the bottom & that simply turning it over would be an instant mess, I was thinking "prob no one else in the store would have to do this", making sure the bottom wasn't already wet before dangling it above me to squint at the ingreds (need new glasses .. I hope) as quickly as possible given the questionable container integrity evidenced by all the pools of grease in the display case.

[Mods - plz enter this in longest run-on sentence of the day contest, if that's still goin on] lol

[Lisa]

We constantly read posts on here where someone has been glutened from a product that was supposedly gluten-free only it was cc'd so it isn't gluten-free.

Yes, that does happen from time to time. But you must realize that everyone has different sensitivity levels. Just because someone has an issue with a "gluten free" product, does not mean that others will. You must find you own safety level.

[squirmingitch]

Yes, that does happen from time to time. But you must realize that everyone has different sensitivity levels. Just because someone has an issue with a "gluten free" product, does not mean that others will. You must find you own safety level.

I agree.

[Lisa]

Realizing the ingred list was on the bottom & that simply turning it over would be an instant mess, I was thinking "prob no one else in the store would have to do this", making sure the bottom wasn't already wet before dangling it above me to squint at the ingreds (need new glasses .. I hope) as quickly as possible given the questionable container integrity evidenced by all the pools of grease in the display case.

[Mods - plz enter this in longest run-on sentence of the day contest, if that's still goin on] lol

I did that yesterday. Why do they put the labels on the bottom of the hot rotisserie chicken. It's dangerous on many levels.

Tom gets the prize of the day for the longestrunonsentence.

[Lisa]

I agree.

I didn't mean to stomp on your vent. Everyone deserves a place here to vent.

[squirmingitch]

I didn't mean to stomp on your vent. Everyone deserves a place here to vent.

No problem, you didn't stomp on my vent. I just had a "little" vent today.Wait till one day I get on a rip roaring roll.

[Lisa]

[bartfull]

I am not stomping on your vent either, believe me. Lord knows I have come here to vent many times. But I have to tell you, I would be in absolute HEAVEN if gluten were the ONLY intolerance I had! If I weren't also intolerant to soy and corn, I could at least eat some Udi's or Canyon Bakehouse breads. I wouldn't have trouble with most ice creams, frozen vegetables, canned goods, and practically everything else the grocery store carries.

If I were not intolerant to corn and soy, I could eat in a restaurant once in a while. As it is, there is no WAY I would take a chance. Even really good gluten free restaurants have either corn or soy in every dish on the menu.

If I were not intolerant to corn, I could take over-the-counter medications and supplements. As it is, I have to have everything made at a compounding pharmacy at at least five times the cost.

OK, now, don't you feel LUCKY?

But seriously, it'll get easier for you. I understand the frustration, but hang in there. And when it gets to you, this is the place to vent.

AND find great advice.

[Gemini]

I'm not trying to argue with you Lisa because I agree that there is so much more gluten-free food out there today than even a year ago but I get peeved at all the stuff labeled gluten free when it really isn't. It isn't tested, it is produced on shared equipment & so on & so forth. It's misleading. People keep sarong to me there are so many gluten-free products in the stores now (all excitedly) like it's really easy for me to find all kinds of stuff to eat. As if I don't have to eat any differently then I ever did; all I have to do is go to the grocery store & like magic I can walk out with everything I used to eat only now it's made gluten-free.

These people are getting this idea from all the hype as well as from all the "mislabeled" gluten-free products. We constantly read posts on here where someone has been glutened from a product that was supposedly gluten-free only it was cc'd so it isn't gluten-free.

And that was my venting for the day. Sometimes you just gotta do it!

I respectfully share your need to vent away but my vent, and it's a small one, will somewhat counter yours!

The notion that packaged gluten-free food is contaminated to such a great extent is just not true. If it were, the majority of Celiacs would not recover. There are definitely bad companies out there but just because one may choose to produce gluten-free foods in a non-dedicated facility, does not mean they contain gluten. Most companies test for compliance that I do business with and it's a standard I look for. Many source their ingredients well. As Lisa said, things were much different when I was diagnosed 7 years ago. I am grateful for the many small business people who strive to make our lives easier and more delicious. I am a very sensitive Celiac who almost ended up with a feeding tube because I was so sick at diagnosis, so I am one who take this whole diet very seriously. Most Celiacs have more than one intolerance, including myself, so reactions can happen for many reasons.

I don't find what most of the industry does misleading at all. I have yet to see a package that doesn't warn people about shared facilities or other ingredients that it may contain that may do us harm. I research a product I see before I buy it and have yet to have a problem from what I consume. I think the learning curve is large with Celiac and, until people really get to know how to do this, there will be mistakes. You also cannot believe everything you read about people who claim cc from a product. It does happen but not as often as many think. Most people do very well with the gluten free diet, which may include some processed foods. If you really believe that most gluten-free food is contaminated and you'll get sick from eating them ,you probably will whether there is gluten in them or not.

[squirmingitch]

I am not stomping on your vent either, believe me. Lord knows I have come here to vent many times. But I have to tell you, I would be in absolute HEAVEN if gluten were the ONLY intolerance I had! If I weren't also intolerant to soy and corn, I could at least eat some Udi's or Canyon Bakehouse breads. I wouldn't have trouble with most ice creams, frozen vegetables, canned goods, and practically everything else the grocery store carries.

If I were not intolerant to corn and soy, I could eat in a restaurant once in a while. As it is, there is no WAY I would take a chance. Even really good gluten free restaurants have either corn or soy in every dish on the menu.

If I were not intolerant to corn, I could take over-the-counter medications and supplements. As it is, I have to have everything made at a compounding pharmacy at at least five times the cost.

OK, now, don't you feel LUCKY?

But seriously, it'll get easier for you. I understand the frustration, but hang in there. And when it gets to you, this is the place to vent.

AND find great advice.

Like you I can not eat soy so Udi's is out for me. BTW, Canyon Bakeouse Mountain White & Cinnamon Raisin don't list corn or soy as ingredients so maybe you can eat those. The sea salt & egg combo put them out of the running for me. I'm searching for some bread other than EneryG that I can eat. Because I have dh I also have to limit my iodine intake very carefully so that means no milk, cheese, butter, cream cheese, sour cream, ham, potato skins, egg yolks, certain beans, turnip greens, spinach, lima beans, strawberries, seafood, anything containing caraneegan, any canned or processed food containing salt & the list goes on. I have done a challenge on the iodine & it is a real factor for me. I just had my second epidural in my neck without the doc using the iodine contrast. That's a bit scary as one misstep & you can be paralyzed or have a stroke. They can obviously do it w/o iodine contrast but it is an added tool which helps them to get it right. One prefers to be able to utilize all the tools at hand.

I have not yet had corn as I have not had a chance to do a challenge of it to find out if I can have it or not. I have been too busy dealing with all the rest. I have been squirming with itchies since April. As I sit here typing, I have nine 1 to 1 1/2" dia. lesions in my scalp alone which have been going for 4 weeks & are now finally on the wane. I'm still trying to pinpoint which food was cc'd or if it was a combo of cc plus a little too much iodine.

Okay, now don't YOU feel lucky?

BTW, try finding a vitamin which does not contain iodine, gluten, soy, dairy & salt. It was a trial but I finally found one. It may work for you but I do not know if it has corn. You can call the company & ask. It is "Vitamins Only" by Solgar. Free of yeast, wheat, soy, gluten, dairy, artificial preservatives, flavors or colors, sugar, salt & starch.

And yes, it's lovely to have a place to vent. I got my vent out yesterday & my sense of humor has returned today. I'm sure, due in part to not being paralyzed or stroking out on the doc's table today!

[squirmingitch]

I respectfully share your need to vent away but my vent, and it's a small one, will somewhat counter yours!

The notion that packaged gluten-free food is contaminated to such a great extent is just not true. If it were, the majority of Celiacs would not recover. There are definitely bad companies out there but just because one may choose to produce gluten-free foods in a non-dedicated facility, does not mean they contain gluten. Most companies test for compliance that I do business with and it's a standard I look for. Many source their ingredients well. As Lisa said, things were much different when I was diagnosed 7 years ago. I am grateful for the many small business people who strive to make our lives easier and more delicious. I am a very sensitive Celiac who almost ended up with a feeding tube because I was so sick at diagnosis, so I am one who take this whole diet very seriously. Most Celiacs have more than one intolerance, including myself, so reactions can happen for many reasons.

I don't find what most of the industry does misleading at all. I have yet to see a package that doesn't warn people about shared facilities or other ingredients that it may contain that may do us harm. I research a product I see before I buy it and have yet to have a problem from what I consume. I think the learning curve is large with Celiac and, until people really get to know how to do this, there will be mistakes. You also cannot believe everything you read about people who claim cc from a product. It does happen but not as often as many think. Most people do very well with the gluten free diet, which may include some processed foods. If you really believe that most gluten-free food is contaminated and you'll get sick from eating them ,you probably will whether there is gluten in them or not.

I respect your right to your opinion but I have a right to mine also. I take exception to your last line. You are saying that if I believe a gluten-free food I have eaten is contaminated that I will probably get dh blisters/lesions whether there was gluten in them or not. I heartily disagree. Or maybe I need a psychiatrist because the dh is psychologically induced.

Let's just take one example of one of the foods labeled gluten-free which you claim you have yet to see such a package which doesn't warn the purchaser about shared facilities. Chex gluten-free cereal. I have 2 boxes here. Rice & Honey Nut. I read every single word on both boxes & not once do they say:

A) that the company tests for gluten

that the product is made in a facility which also produces gluten containing products

C) that the product is produced on shared equipment

In fact, the boxes do not say a word about the gluten issue other than to loudly proclaim "Gluten Free".

I went to their website & it does not state a single word as to any of the issues above. They simply proclaim "Gluten Free".

I bought these when I was still an infantile newbie who believed in the big letters which claimed gluten free. My hubby is eating the cereals as he is not a celiac.

Lastly, I would direct you to the link below. Please read the whole thing including the comments after the article. I have to admit I was believing the BHT thing & thinking maybe I should give the Chex a go. Then I read the comments. Some very nice comments there. Pay special attention to the ones from celiacs who have dh.

Open Original Shared Link

I do agree there is a stiff learning curve the size of Mt. Everest!

Respectfully.