Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Wow! This Article Scares Me About Gfd... Anyone Else!


  • Please log in to reply

23 replies to this topic

#1 a84c72

 
a84c72

    New Community Member

  • Advanced Members
  • Pip
  • 16 posts
 

Posted 13 November 2012 - 11:39 PM

I came across this and it's hit me HARD.

Anyone agree with it? This TERRIFIES me!

http://scdlifestyle....e-slowly-dying/
  • 0
**POOF** Out.

Celiac.com Sponsor:

#2 tom

 
tom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,930 posts
 

Posted 14 November 2012 - 12:12 AM

I see it as mostly scaremongering w/ incomplete data/anecdotes.

Sure, some of us have to stop eating some foods besides just gluten to feel better, but that doesn't mean that the typical celiac is doomed like the picture painted in that article.
  • 0
>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#3 Persei V.

 
Persei V.

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 178 posts
 

Posted 14 November 2012 - 01:22 AM

Following only a gluten-free diet sometimes it's not enough to heal, like the post above points out. Not to mention I wouldn't trust an article which uses bolded sentences and sentences like "This is crazy!" and "You are going to die much sooner than you think".

There's even a research made on my country, though with only 22 subjects, I doubt it is of value. So 22 celiacs still have gut inflammation. Wow. That's a lot of people. Come on, I'm calling pseudoscience on this one.
  • 0
Lactose free: 8/6/2006
Gluten and dairy free: 5/2/2012
Grain free: 11/12/2012

I am able to eat somre processed foods again (chocolate, lollipops, soysauce).

#4 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 14 November 2012 - 01:38 AM

He paints a very simplistic picture of the process that is celiac disease, and chooses a timeframe that those who have lived a lifetime with this disease will not heal within. I am five years in and feel that for the last year or two I have had it under control. But I am old, and you younger ones should not have the problems I do.

Leaky gut can cause you to become intolerant to other foods and should be your highest priority (along with the elimination of gluten, of course) in treating your condition. High quality probiotics, digestive enzymes to replace those the pancreas is no longer producing, and for many L-glutamine will help intensely with this. If you do not heal your leaky gut you will continue to have inflammation. I had high sed. rate and CRP for years, of unknown origin, and it was only after my psoriatic arthritis was brought under control (no, it was too late to control it with gluten free :( ) that it went down to normal. So it was not my gut that was inflamed, it was my joints...

Nutrient deficiency for some of us is going to mean a lifelong supplementation. For those less severely damaged or diagnosed earlier, you may well resume absorbing normal levels of nutrients but some of us have to keep supplementing. This is true for many conditions so it should not be earth-shattering that some of us will continue to need Vitamin D for the rest of our lives. Goodness only knows, the whole US population supplements Vitamin D in their milk.

I agree with the pp's that this is a scaremongering article and pseudoscience. The rules of treatment of celiac disease (and you will not hear these from most doctors) that I propose are:

1. Eat a strict gluten free diet.

2. Heal your leaky gut with probiotics and whatever else you need.

3. Identify any additional food intolerances and stop eating them. After your gut has healed you may be able to reincorporate them into your diet

4. Be patient with your healing process and don't judge your progress by anyone else's progress. We are all different, have varying degrees of damage, and varying abilities to heal..

5. Try to find a good supportive doctor who will monitor your progress, test your celiac blood levels, nutrient levels and levels of inflammation.

Celiac disease is a life diagnosis, not a death sentence, and live your life accordingly :) , joyfully and happy in the knowledge that it can be treated by what you choose to ingest.
  • 4
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#5 SMDBill

 
SMDBill

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 104 posts
 

Posted 14 November 2012 - 04:28 AM

I think what the author failed to capture is that the GFD is not the only prescription for celiac disease. Yes, it is the one prescription every single celiac must follow, but it fails to take into account the vitamin and mineral supplements and shots/intravenous treatments. I have yet to hear from anyone who was not told by their gastroenterologist that they need certain boosts, often to B12, K, A, B, C, D, potassium and magnesium, among others. Sometimes over the counter supplements are insufficient and further treatment is required. And bone growth is now a possibility for those who have lost bone density.

It's foolish to write that there is only one response to celiac by a physician when anyone who has it is fully aware that the entirety of the blood work, bone density test and biopsies regularly result in a battery of medical needs beyond just a change in diet. Sure, if we just went gluten-free we probably would end up in very poor health, but that ignores the other obvious needs through quality of nutrition, prebiotics, probiotics and many different types of supplements to help our body get its levels back to normal ranges.

The article is believable if you only take the first step and go gluten-free without checking or monitoring the many other things we also have to worry about that are effects brought on by a failed gut. The author is using the article to drive people to the SCD, which they promote heavily for financial gain, so they left out valuable information for a new celiac who now would be fearful they were on the wrong path, rather than realizing the missing information is all that other stuff we also do to heal the gut that takes more than a change in diet.
  • 0

#6 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 14 November 2012 - 05:11 AM

Before getting too scared, look at the credentials of the author. Is he a medical doctor? A gastroenterologist? A research scientist?
None of these things.

Then look at whether or not they are trying to sell you something. Yes, they are.

You can also look at the quoted studies more carefully. In some cases they are talking about people who aren't being careful about the diet. They are also talking about people who haven't been on the diet for very long. Even if they are being very careful, they are probably still learning about cc issues. I know that it took me a long time to learn how to avoid cc and I still have problems sometimes. Then there is the question of levels of sensitivity to gluten and just how much processed foods their diets might contain.

There is a lot pseudoscience associated with this condition. It is unfortunate that the condition isn't all that well understood as of yet, so that leaves a lot of room for pseudoscience to step in.
  • 3

#7 kareng

 
kareng

    Be Royal

  • Moderators
  • PipPipPipPipPipPip
  • 14,116 posts
 

Posted 14 November 2012 - 05:31 AM

Before getting too scared, look at the credentials of the author. Is he a medical doctor? A gastroenterologist? A research scientist?
None of these things.

Then look at whether or not they are trying to sell you something. Yes, they are.

You can also look at the quoted studies more carefully. In some cases they are talking about people who aren't being careful about the diet. They are also talking about people who haven't been on the diet for very long. Even if they are being very careful, they are probably still learning about cc issues. I know that it took me a long time to learn how to avoid cc and I still have problems sometimes. Then there is the question of levels of sensitivity to gluten and just how much processed foods their diets might contain.

There is a lot pseudoscience associated with this condition. It is unfortunate that the condition isn't all that well understood as of yet, so that leaves a lot of room for pseudoscience to step in.


Yep. Exactly!

There are a lot of slick, professional looking websites. Just because they look good, doesn't mean they are good. Check the site & authors's credentials.
  • 3

LTES

 
"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
Celiac.com - Celiac Disease Board Moderator
 

 


#8 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,550 posts
 

Posted 14 November 2012 - 05:46 AM

Celiac disease is a life diagnosis, not a death sentence, and live your life accordingly :) , joyfully and happy in the knowledge that it can be treated by what you choose to ingest.


Beautifully said, Shroom and I echo your thoughts and suggestions.

Nothing in writing ever terrifies me (unless it is full of spelling and grammar errors :D because that's scary!) but there are some wild and unsubstantiated theories out there on the internet. I am always a bit skeptical and weigh the evidence and check the source references. Then, I research it myself.

If there's nothing substantial to support it and I discover that someone is trying to sell me something, then I understand the motive behind the article.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#9 Darn210

 
Darn210

    Cookies!!

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,729 posts
 

Posted 14 November 2012 - 05:58 AM

Yep . . . what they've said above!! I read that article and some of the things that immediately came to mind is . . .

At some point in this series they are going to try and sell me something. Also keep in mind, they are publishing a "series" to make you keep coming back to get more hits on their site. The more hits they get, they more they make in advertising. Plus, reading in the comments section, I saw a reference to testing from Cyrex Labs with a "stay tuned" from the article's author. Yep, they're going to sell us something . . . a product, a test, a guide to health.

The other thing I want to point out is that they use a lot of "scary" quotes/data from legitimate sources. However, to really understand those quotes or data, you need to go and read those publications in their entirety. You need to see the context of that information. It's easy to lift a quote and leave behind the explanation.
  • 1
Janet

Experience is what you get when you didn't get what you wanted.


Posted Image

#10 blowersm

 
blowersm

    New Community Member

  • Members
  • Pip
  • 2 posts
 

Posted 14 November 2012 - 06:16 AM

These guys are trying to sell books and coaching programs . . . and are rather sensationalistic in their methods.
  • 0

#11 Adalaide

 
Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,441 posts
 

Posted 14 November 2012 - 06:18 AM

Yep . . . what they've said above!! I read that article and some of the things that immediately came to mind is . . .

At some point in this series they are going to try and sell me something. Also keep in mind, they are publishing a "series" to make you keep coming back to get more hits on their site. The more hits they get, they more they make in advertising. Plus, reading in the comments section, I saw a reference to testing from Cyrex Labs with a "stay tuned" from the article's author. Yep, they're going to sell us something . . . a product, a test, a guide to health.

The other thing I want to point out is that they use a lot of "scary" quotes/data from legitimate sources. However, to really understand those quotes or data, you need to go and read those publications in their entirety. You need to see the context of that information. It's easy to lift a quote and leave behind the explanation.


I was thinking the same thing. There is nothing like scaring someone, like literally making you afraid for your like, to get you to spend money.

And really, why be scared? Are you rampantly paranoid that you might die in a car accident every time you leave your house? Are you afraid every time you eat that might choke to death? What is the point of living your life too scared to DO anything? Or just plain scared? One day we are all going to die, it is just plain unhealthy to spend your time paranoid about it.
  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#12 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,134 posts
 

Posted 14 November 2012 - 07:48 AM

The 72% increased death risk sounds scary until you think about what the original death risk was. If the oringal risk was 1% and it increased 72% then it is1.72%. They didn't actuallly give the real number, just a dramatic sounding increase percentage. There are lots of people selling cures and treatments for 'leaky gut" on the internet these days. Lots of hype and huckstering around it.
  • 1
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#13 Takala

 
Takala

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,555 posts
 

Posted 14 November 2012 - 11:41 AM

There is a 100% chance of dying sometime during your lifespan ! OMG ! Buy this supplement and buy this book ! :blink:

And I say that as a person who's eaten a Specific Carbohydrate Diet and who is probably lower grain carb than a lot of gluten intolerants.
  • 0

#14 ncdave

 
ncdave

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 232 posts
 

Posted 15 November 2012 - 07:58 AM

If you think that ones scary ,have a quick read on this http://www.nourishin...p/gmo-free.html
  • 0
gluten free 12/11
dairy free 2/12
soy free 10/12
corn free 10/12
nightshade free 10/12

#15 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,098 posts
 

Posted 15 November 2012 - 08:16 AM

What is really scary is while trying to open Dave's link on my cell I almost tweeted this topic to the world - doh!

BTW - I don't find the orig info scary - only sad that people can and often do pray on the unknown aspects of gluten enteropathy to line their pockets. Read as much as possible about Celiac, but do consider the source and their motivation. If you are struggling with healing after removing gluten - accept that it will take time along with increased knowledge to heal, but it can be done.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: