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

Negative News?


Ennis-TX

Recommended Posts

Ennis-TX Grand Master

What is up with the news feed spamming stuff about negative effects of the gluten-free diet? I know it can be unhealthy if you do it wrong and eat a bunch of gluten-free processed foods and junk. And most of us here have to be on a gluten-free diet and know how to do it right. But the news feeds here keep on pumping out the negative side of our medically required diet. Keep seeing ones come up daily about diabetes, heart issues, about it being generally bad for you. Just Negative, Negative, Negative I feel it is corning some people here or others who constantly get the feed. My FB feed keeps showing these and it looks horrendous. Almost seems like sabotage -_-   Can we get some nice news, good news, something relevant? Like it is celiac awareness month, lets see news feeds about the history of celiac disease, storys of healing, breakthroughs in testing, reviews on bread alternatives, importance of supplementing, explanation and break down of symptoms......something at least productive.  I know you need to cover both aspects of the disease and show a unbiased feed of information, but can we space out the more negative ones?   This disease already makes me feel like I do not belong in society and the pond scum of the human genome. Seeing stuff about the negative effects of my medically forced diet if done wrong with processed junk, complications, etc. really just makes it worse.
 


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

It is a news feed, and that particular study is currently trending. It is a fair topic for discussion...in this case we don't censor our feed, as it may be important to our visitors.

Posterboy Mentor

This is an article that summarizes the pros and cons of being possibly what happens if being a celiac is abandonded by the "celebrity" of eating gluten free for weight loss.

dedicated to JMG and other British/Irishers on the international board since this article comes courtesy of the Irish Times (IT) and my friend at work who found the fortune of finding a wife in Ireland.

Open Original Shared Link

I am afraid the selection of much more palpable/tasty (mostly) gluten free breads who all knows who have been at this a while the package they came in almost was preferable to the bread itself unless you could toast them (and then they were sorta) tasty.

posterboy,

Ennis-TX Grand Master
3 minutes ago, Posterboy said:

This is an article that summarizes the pros and cons of being possibly what happens if being a celiac is abandonded by the "celebrity" of eating gluten free for weight loss.

dedicated to JMG and other British/Irishers on the international board since this article comes courtesy of the Irish Times (IT) and my friend at work who found the fortune of finding a wife in Ireland.

Open Original Shared Link

I am afraid the selection of much more palpable/tasty (mostly) gluten free breads who all knows who have been at this a while the package they came in almost was preferable to the bread itself unless you could toast them (and then they were sorta) tasty.

posterboy,

Unsure what the frack this has to do with my original post....I was referring to how we had a few days in a row with constant negative post. Mostly about little stupid issues like increased risk of heath disease, diabetes, and all these health issues about the gluten-free diet saying it is not good for you and many stating it is dangerous. Fact is many of these studies were based on people eating all the gluten-free processed foods, much higher starch, sugar, and general crap food intake. This is  detrimental to the community in a way cause most of us know and talk about the whole foods diet and only using the processed stuff for the occasional treat.  I was going off about how we needed more positive articles in the news feeds and to try spacing the negative ones. .......I get the face book feed and it really looked bad for a few days there.          

On a side note about bread, canyon house has great reviews....I never tried it......Julian Bakery is decent for a Grain Free, Gluten Free bread...and the only packaged ones I can eat......PS Have you tried my vegan cheesy garlic bread recipe? Stuff is GODLY when using Julian Bakery mozzarella and nutiva butter flavored coconut oil. Fresh cheesy bread with the cheese IN THE DOUGH. love it with a bit of extra parsley and herbs in it.

Posterboy Mentor

Ennis_Tx,

Mainly the concept we actually have a lot of gluten free (yes they are packaged junk food) options but if the crowd moves to FODMAPs or what it considered the next food "demon" then if lectins are considered the new "gluten" it will be easy for our message that is this is  a medical problem can gt lost on the next craze.

Open Original Shared Link

right or wrong people who need to be be gluten free for medical reasons' already feel fustrated (for the reasons you mentioned) the article asked is it ("gluten free") a fad?

If they are writing about it they are in essence saying slow down on gluten free because it now a "Hip" fad and are questioning the medical necessity of being gluten free.

I was commenting this might be high tide and kind of agreeing with you.

Let's hope you are right and we get a "little good news" soon as Anne Murray might say we sure could use some good news.

sorry if I took a left turn,  this is back handed good news I guess or maybe I have been setting at the computer too long!!!!

time for a break.

posterboy,

 

kareng Grand Master
1 hour ago, Ennis_TX said:

Unsure what the frack this has to do with my original post....I was referring to how we had a few days in a row with constant negative post. Mostly about little stupid issues like increased risk of heath disease, diabetes, and all these health issues about the gluten-free diet saying it is not good for you and many stating it is dangerous. Fact is many of these studies were based on people eating all the gluten-free processed foods, much higher starch, sugar, and general crap food intake. This is  detrimental to the community in a way cause most of us know and talk about the whole foods diet and only using the processed stuff for the occasional treat.  I was going off about how we needed more positive articles in the news feeds and to try spacing the negative ones. .......I get the face book feed and it really looked bad for a few days there.          

On a side note about bread, canyon house has great reviews....I never tried it......Julian Bakery is decent for a Grain Free, Gluten Free bread...and the only packaged ones I can eat......PS Have you tried my vegan cheesy garlic bread recipe? Stuff is GODLY when using Julian Bakery mozzarella and nutiva butter flavored coconut oil. Fresh cheesy bread with the cheese IN THE DOUGH. love it with a bit of extra parsley and herbs in it.

I don't know what that was about either?  

I have always thought our new service was a  bit  off.  We get the same article that is "reprinted" word for word 6 times but miss the real news stories.

 

it is Celiac Awareness  month in the US.  But I think we have posted 1? article.  There have been at least 5 different ones I have seen this month.  Our " news service" hasn't picked any of them up.

Awol cast iron stomach Experienced

Happy weekend Ennis. To me -I ponder your question and go conspiracy theorist. Could it be more people are celiac/ncgs and try the diet in frustration due to sub par testing parameters for MDs or MDs that test at inappropriate times, tests, etc. Desperate go gluten-free. themselves.  Still much to be done there testing wise . yeah one should look out for oneself. More than one poster on here has asked for testing and is dismissed, misdiagnosed, and other unjust experiences or goes decades of ill health.

  If I recall wasn't it recently determined a no go on generalized screening for celiac in the general population, although increased rates of celiac are being uncovered, this testing could be more cost savings in long term for national health care savings and public health issues. Could inflammation from undiagnosed, misdiagnosed, uncontrolled celiac lead to greater health issues and diseases. Is uncontrolled chronic inflammation at the core of  human disease? Shouldn't humanity stop this freight train before it derails? are celiac canaries in the mines? Sigh. 

Many companies jumped on the band wagon to produce gluten-free foods out of marketing or (gasp) greed  but may not take all the necessary stringent quality control measures to be celiac safe, shared facility etc. Minefield of problems greater society doesn't want part of. Lastly, brakes put on effects big time production of gluten grain industry or even larger grain (gluten-free/ non gluten-free) industry would be removing a whole food group (nutritional pyramid level - blasphemy) it is tied to a huge food industry that likely give to causes and politics which the ramifications of above issues would cause massive potential damage. Are the above players undermining the core message by downplaying what heals thy ills?

Am I getting too preachy, political, conspiracy theorist? Probably, but must be said.

We should be glad gluten hasn't destroyed Awols brain entirely to ponder such theories. ( Dramatic pause-could gluten be a way to zombiefy the masses? New A&E material there.) Perhaps we are just too brilliant and they must stupify us with gluten grains because our brains are just too frighteningly powerful! So they must create anti gluten-free propaganda material. 

 Likely multi factorial and larger issues above what appears at surface or your inital question. Deeply layered. Deep thoughts for a Friday night. Huh?

Site states must be unbiased and report feed. So they do.

I'll be biased for them this evening (Wink) all of the above and possibly more. Grain industry makes up a lot of commodities, trade, economy, etc. It's like pulling out a Jenga piece ! Aaack!

Maybe site runs feed to be unbiased and also to engage us, challenge our grain damaged brain to rise to the occasion? Perhaps just an outlet feed to allow Awol dramatic creative licence  of Wit and sarcasm.

Maybe it's to unite us and make us stronger ..... 

 

 


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



Celiac.com Sponsor (A8-M):



Jmg Mentor

The news feed here is just reflecting happenings in the wider world. The flood of stories are a consequence of this recent study: Open Original Shared Link  It's made news around the world due to the growing popularity of the gluten-free diet and the wider obsession with health and lifestyle that is obvious in our daily lives.

Journalists inevitably cover stories like this study from a particular angle and devious sub editors make up headlines that drive readership but ignore accuracy. For example I saw a headline saying that the gluten free diet was bad for your heart, whilst the article confirmed the study simply said that the diet didn't deliver any heart health benefits.

Open Original Shared Link 

I enjoy the news feed here, regardless of slant, as it lets me see what info others will be using when they form an opinion. This can be useful, particularly if people ask me, as they have this week, about the wider health implications of the diet. Forewarned is forearmed! Like any news however there's always more coming round the corner. So it won't be a hot topic for much longer, the ladies and gentlemen of the press will move onto another health 'smoking gun' and the balance of coverage will tip back somewhat to the positive. :)

 

 

Jmg Mentor
8 hours ago, Posterboy said:

dedicated to JMG and other British/Irishers on the international board since this article comes courtesy of the Irish Times (IT) and my friend at work who found the fortune of finding a wife in Ireland.

Why thank you :)

I only wish I'd found love when I was in Ireland. That's a lovely accent. :wub: 

  • 3 weeks later...
apprehensiveengineer Community Regular

I think the gripe with this sort of article is that it's not telling the right story. When you write anything, you have a choice about whose story you tell and the consequences of it.  While such articles are factual in the sense that objectively, a GFD is worse than a similar regular one, the focus of these articles undermines the struggles of those who must be gluten-free while also not really giving any information that is likely to result in changed behaviour. All this sort of article does is justify the anti-gluten-free circlejerk.

I think many of the journalists here think they're on the side of people with celiac disease because they're underlining that the fad diet is dumb/pointless/harmful/whatever. While this may be true, the message the reader remembers is this: the GFD is frivolous. It doesn't matter if there's a line in the article that says something about how the GFD is a medical necessity for those with celiac disease. People don't remember the asterisk in the article. All they remember is that the GFD is for idiots. 

What would be valuable and useful is discussing celiac disease - symptoms, longterm consequences etc. and how strict those with celiac disease must be with the GFD in the context of this research. This will do a better job of convincing people that the fad diet is dumb, but do so in a responsible way that doesn't undermine the real problems faced by those with celiac disease or other medical conditions. Plus, the increased awareness might make someone realize that they should get tested.

Jmg Mentor
5 hours ago, apprehensiveengineer said:

What would be valuable and useful is discussing celiac disease - symptoms, longterm consequences etc. and how strict those with celiac disease must be with the GFD in the context of this research. This will do a better job of convincing people that the fad diet is dumb, but do so in a responsible way that doesn't undermine the real problems faced by those with celiac disease or other medical conditions. Plus, the increased awareness might make someone realize that they should get tested.

My own bugbear is that in dismissing the fad diet journalists will typically reference Celiac but will often say that only Celiac patients should be following the gluten free diet. Whatever the consensus medical opinion of NCGS, it's a fact that there are many people who are not diagnosed Celiac but who have been advised by their doctors to follow a gluten free diet. That distinction is typically too subtle for such articles and they therefore help to support the idea amongst the wider populace that if you're not celiac you can eat gluten and if you're avoiding it your either deluded, a chronic attention seeker or jumping on a bandwagon. A reductive and potentially harmful generalisation. 

apprehensiveengineer Community Regular

@Jmg

For sure. I think whatever one's consensus is on the validity of gluten causing problems for those diagnosed with NCGS, one has to admit that these people do have a real problem, even if it's one we don't fully understand. Articles like this do a disservice to that fact, which as you say is nuanced. There are also other autoimmune diseases that seem to respond to the GFD for reasons that we don't understand either.

It's also problematic as from reading that one-line asterisk on celiac disease, people come down very hard on people who lack a formal diagnosis, not realizing that this is the majority of those with celiac disease. I'm in this camp and so I avoid providing the more nuanced "various doctors I have seen are about 99% sure that I have celiac disease, but I don't have a positive biopsy/blood because the gluten challenge would kill me." If I tell people that I am not taken seriously, despite the fact that many serious medical conditions are diagnosed purely on the basis of described symptoms and response to specific medications for that disease.

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

      High TTG-IgG and Normal TTG-IgA

    2. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    4. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    5. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

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

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

    yooperjb
    Newest Member
    yooperjb
    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

    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • 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.
×
×
  • 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.