Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gripe About The Media


Streetlegal

Recommended Posts

Streetlegal Apprentice

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Lisa Mentor

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. :D

Megaroni Newbie

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 Mentor

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. B)

squirmingitch Veteran

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!biggrin.gif

tom Contributor

...... 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 Mentor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

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 Mentor

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. :rolleyes:

Tom gets the prize of the day for the longestrunonsentence. :lol:

Lisa Mentor

I agree.

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

squirmingitch Veteran

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.biggrin.gifWait till one day I get on a rip roaring roll.laugh.giflaugh.giflaugh.gif

Lisa Mentor
:unsure::(:P
bartfull Rising Star

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? :lol:

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 Experienced

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!biggrin.gif

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 Veteran

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? :lol:

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?biggrin.giflaugh.gif

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! laugh.giflaugh.giflaugh.gif

squirmingitch Veteran

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

B) 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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

    3. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    4. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.