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

[a84c72]

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

Anyone agree with it? This TERRIFIES me!

Open Original Shared Link

[tom]

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.

[Persei V.]

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.

[mushroom]

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.

[SMDBill]

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.

[dilettantesteph]

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.

[kareng]

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.

[IrishHeart]

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 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.

[Darn210]

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.

[blowersm]

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

[Adalaide]

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.

[GFinDC]

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.

[Takala]

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

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.

[ncdave]

If you think that ones scary ,have a quick read on this Open Original Shared Link

[GottaSki]

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.

[Pegleg84]

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

[Gemini]

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.

[DavidHarp]

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

Anyone agree with it? This TERRIFIES me!

Open Original Shared Link

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

[kareng]

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.

Open Original Shared Link

[1desperateladysaved]

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.

[w8in4dave]

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!

[eers03]

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!

[w8in4dave]

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

[surviormom]

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.