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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    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

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • 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!
×
×
  • 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.