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


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23 replies to this topic

#16 Pegleg84

 
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Posted 15 November 2012 - 10:30 AM

This article is sketchy, not so much because it might be giving skewed information and trying to sell us something in the end, but that if someone read it the wrong way, it seems to say: The gluten free diet doesn't work!
There should at least be reinforcement right from the beginning the the GFD is absolutely neccessary, but it's not always enough. The danger is that someone knew to the diet might take it the wrong way.

That aside, I think anyone whose been gluten-free (or as gluten-free as humanly possible. We all slip up on occasion) for 2 years or more know that we never get 100% better. Other intolerances pop up, complications arise due to CC and things set in motion from before we went gluten-free. We'll never be perfectly healthy or "normal" again, but compared to how things were before, it's a million times better. Sure, we're at greater risk for disease, but we're at much much less risk than we were before going gluten free.

The GFD is the standard "prescription" because that's what doctors are told, and unless they are very knowledgeable, they likely won't reccomend taking digestive enzymes, probiotics, vitamin supplements, going of dairy, or any other other things Celians have learned the hard way.

What's interesting about these studies is that they do show that for most Celiacs, there are lingering problems aside from damage to vili, and this is something that needs to be further researched. Maybe there will come a day when there are additional treatments, whether dietary or drugs, to help us heal completely.

Don't buy the snake oil!

Peg
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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


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#17 Gemini

 
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Posted 15 November 2012 - 12:42 PM

This article is sketchy, not so much because it might be giving skewed information and trying to sell us something in the end, but that if someone read it the wrong way, it seems to say: The gluten free diet doesn't work!
There should at least be reinforcement right from the beginning the the GFD is absolutely neccessary, but it's not always enough. The danger is that someone knew to the diet might take it the wrong way.


This article is not worth the read....total scare tactics and mostly untrue.

That aside, I think anyone whose been gluten-free (or as gluten-free as humanly possible. We all slip up on occasion) for 2 years or more know that we never get 100% better. Other intolerances pop up, complications arise due to CC and things set in motion from before we went gluten-free. We'll never be perfectly healthy or "normal" again, but compared to how things were before, it's a million times better. Sure, we're at greater risk for disease, but we're at much much less risk than we were before going gluten free.


I do not agree with this statement that we never get 100% better. Many, many Celiacs do heal and move on to a normal life....I did. I have been gluten-free and dairy lite for going on 8 years and have never felt better in my life. I nearly died from Celiac so there was no way to go but up. However, no one on this planet, except for a very few, are completely healthy, including non-Celiacs. In fact, they seem to be in worse health than most with Celiac Disease because they are still eating that traditional bad American diet of mostly processed foods. Celiacs are no more at risk for disease than the general public, if you educate yourself on and follow a strict gluten-free diet. Although you can never say never, there should be little risk of cc if you follow the diet correctly and don't take unneccessary risks. It's also helpful to have the expectation you will get better and heal because if you worry a lot about whether you will heal, that sets a negative tone which will not help. I just do not think of myself as not normal......I am perfectly normal and eat a normal diet. I just happen to have Celiac but am perfectly comfortable with eating this way and never crave anything that I ate before. Maybe it's because I have been doing this for so long, it is second nature to me and even if they came out with a total cure for celiac tomorrow, I still would follow the gluten-free diet......that's how comfortable I am with everything. I can't imagine eating any other way than healthy.

The GFD is the standard "prescription" because that's what doctors are told, and unless they are very knowledgeable, they likely won't reccomend taking digestive enzymes, probiotics, vitamin supplements, going of dairy, or any other other things Celians have learned the hard way.


Some doctors are more savvy than others and do recommend these things but that's what we have other Celiacs for...to give us the good information to a speedier heal. No doctor will recommend going off of dairy unless you find you need to. Not all Celiacs have to give up dairy and no one should unless they are having symptoms from ingesting dairy.

What's interesting about these studies is that they do show that for most Celiacs, there are lingering problems aside from damage to vili, and this is something that needs to be further researched. Maybe there will come a day when there are additional treatments, whether dietary or drugs, to help us heal completely.

Most of the lingering problems are from other AI diseases and once those are triggered, you have them for life. Again, we are not the only ones with this problem. They can be managed quite successfully. I have found mine are 80% better just following the gluten-free diet but that takes time. You also have to learn how to just pick up and move on....those problems are always going to be there but can be managed better than before diagnosis and the diet. There will always be small set backs in life and everyone has them. I am just thankful I have a disease that can be reversed, so to speak, with diet and not have to rely on the AMA for help because they do nothing but medicate people into more bad health. If I can go from an emaciated, weak, dying Celiac to one who works full time, has a long commute and works out in the gym with a trainer twice a week, anyone can. These articles are written by Debbie Downers whose
main goal is to keep people depressed and worried about their health all the time. That's guaranteed business for the medical profession. I know it's easy to be worried in the beginning when you aren't feeling well but most celiacs do fine after figuring out which foods bother them and give time for the gluten-free diet to work it's wonders.
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#18 DavidHarp

 
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Posted 29 August 2013 - 06:21 PM

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

Anyone agree with it? This TERRIFIES me!

http://scdlifestyle....e-slowly-dying/

I'm a medical researcher diagnosed with Celiac at age 5, and doing reasonably well, yet have periods of several week with fatigue, but typically followed by major improvement after fasts of 3-days.   This summer, spent hours pulling and reading full text of scientific studies on Celiac performed within the last decade, and I find strong support for a limited version of this posting's claims.   Only about one-third of Celiac patients progress to completely normal GI status on a gluten free diet, and this takes months.  Most have abnormalities in pathology, including increased gap junction size, and these seem to correlate to some degree with functional abnormalities.

 

So the bottom line is that a gluten-free diet will yield a major improvement in symptoms for most people with Celiac, yet lower level problems will often persist.   After reviewing dozens of related scientific studies, my plan is to 1) pursue both the Cyrex and Enterolab tests for intolerance of other foods (I am sure I am allergic to some other foods, including soy, corn and buckwheat).  Even with the realization that there can be a reasonably high rate of false positives or false negatives, still I will look at the results, see where they are consistent, and see where they match my experience.   E.g., I had what I thought was a bad reaction to sorghum beer.   It takes repeated exposures to a food like this to make a positive determination of such an intolerance.  But if Sorghum came up high with respect to other foods that seem okay for me, that would be useful information.  I would prefer studies with lots of patients showing that these tests were valid to a high statistical confidence level, but I know such studies are difficult and expensive to perform.   I also know that, according to a classic Harvard study, medical innovations typically take at least a decade to move into mainstream medical practice.

 

Jordon Reasoner seems to have a good grasp of some of the emerging conclusions of recent research for a layman.   Also, what he writes about the SCD diet meshes with other credible recommendations and experiences I've heard over the years, and plan to pursue at least a limited form of that approach.   In addition, I've seen some studies indicating that lechitin is helpful for restoring intestinal viability (I'm taking sunflower lechitin due to soy allergies, even though it's the soy protein that's the real issue), and I've felt generally better after taking that and also eating lots of blueberries the past few months.   Needless to say, I've been strictly gluten free for decades, and this is the foundation of any strategy for optimal health with Celiac.

 

Of course, this is a very complex subject, my observations above are just working hypotheses subject to adjustment with more information, and there are many individual factors governing the status and best course for each individual patient.   I've learned a lot from starting to peruse postings on this board, and felt it would be appropriate to share these thoughts if they could benefit anyone. - David


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#19 kareng

 
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Posted 29 August 2013 - 06:42 PM

I'm a medical researcher diagnosed with Celiac at age 5, and doing reasonably well, yet have periods of several week with fatigue, but typically followed by major improvement after fasts of 3-days. This summer, spent hours pulling and reading full text of scientific studies on Celiac performed within the last decade, and I find strong support for a limited version of this posting's claims. Only about one-third of Celiac patients progress to completely normal GI status on a gluten free diet, and this takes months. Most have abnormalities in pathology, including increased gap junction size, and these seem to correlate to some degree with functional abnormalities.

So the bottom line is that a gluten-free diet will yield a major improvement in symptoms for most people with Celiac, yet lower level problems will often persist. After reviewing dozens of related scientific studies, my plan is to 1) pursue both the Cyrex and Enterolab tests for intolerance of other foods (I am sure I am allergic to some other foods, including soy, corn and buckwheat). Even with the realization that there can be a reasonably high rate of false positives or false negatives, still I will look at the results, see where they are consistent, and see where they match my experience. E.g., I had what I thought was a bad reaction to sorghum beer. It takes repeated exposures to a food like this to make a positive determination of such an intolerance. But if Sorghum came up high with respect to other foods that seem okay for me, that would be useful information. I would prefer studies with lots of patients showing that these tests were valid to a high statistical confidence level, but I know such studies are difficult and expensive to perform. I also know that, according to a classic Harvard study, medical innovations typically take at least a decade to move into mainstream medical practice.

Jordon Reasoner seems to have a good grasp of some of the emerging conclusions of recent research for a layman. Also, what he writes about the SCD diet meshes with other credible recommendations and experiences I've heard over the years, and plan to pursue at least a limited form of that approach. In addition, I've seen some studies indicating that lechitin is helpful for restoring intestinal viability (I'm taking sunflower lechitin due to soy allergies, even though it's the soy protein that's the real issue), and I've felt generally better after taking that and also eating lots of blueberries the past few months. Needless to say, I've been strictly gluten free for decades, and this is the foundation of any strategy for optimal health with Celiac.

Of course, this is a very complex subject, my observations above are just working hypotheses subject to adjustment with more information, and there are many individual factors governing the status and best course for each individual patient. I've learned a lot from starting to peruse postings on this board, and felt it would be appropriate to share these thoughts if they could benefit anyone. - David

For a " researcher" I find it odd you would want to use unproven labs and lab tests.


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#20 1desperateladysaved

 
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Posted 30 August 2013 - 05:59 AM

I had 30 years of undiagnosed celiac.  After six months gluten free I had a nutrient absorption test in which I had poor absorption.  At. 18 months gluten free I had another nutrient absorption test and my absorption is good.  I am probably better nourished then nearly all other Americans.  I am not afraid. 

 

I did use many means as available to me to heal.  I used supplements, exercise, sunshine and diet.  I think many people are not willing to do all of this.  But I was desperate and willing to give up my favorite foods.  I had a Chiropractor and A Functional Medicine practitioner that played key roles in sustaining and helping me to recover.  An MD also helped.


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#21 w8in4dave

 
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Posted 30 August 2013 - 06:33 AM

It is scary when you 1st read it, then going thru all the stuff they say.. I was thinking "ok sounds like a pitch to me" And yes lo and behold there is a book. I do believe that "some of what he says is true" But not all the scare tactics .... Makes ya think you don't have any hope, you may as well eat Gluten lol. But we are smarter than that.  I don't buy in to scare tactics. If thats what they think have to do to to get my attention they can forget it!! I'd rather come in here and hear from people who know. Who live it. And who post reputable stuff. Some of you have been gluten free for a long time! It seems to be working. I will stick with you!


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#22 eers03

 
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Posted 31 August 2013 - 07:23 AM

I saw the title and chose not to read it...  Be careful little eyes what you see :-)  I completely respect your choice to be well informed.  As for an article with this title, I'm going with the ignorance is bliss approach!

 

See you when we crack 100 years of age!


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Diagnosis 11/2012

#23 w8in4dave

 
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Posted 03 September 2013 - 07:28 AM

Ohhh I wish we had a like button here sometimes cuz me likes eers03 "See you when we crack 100 years of age!" 


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Recovering Gluten Eater 

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#24 surviormom

 
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Posted 03 September 2013 - 07:42 AM

I am with 1 desperateladysaved, doing all I can to be better and like w8in4dave, I intend to see 100!  Not scared, not reading or buying what they were selling either.  Just living a better life for me and my family.


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein




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