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A Miracle?!? - Change In My Reaction To Gluten


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#46 psawyer

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Posted 02 November 2011 - 04:23 PM

The Wikipedia question is not black and white, although some choose to see it that way.

The negative of Wikipedia is that anyone can edit articles. Any crackpot can post their fictitious view of the facts.

The positive of Wikipedia is that anyone can edit articles. Incorrect information does not last forever.

My own perspective on evaluating information on Wikipedia is this. First look at the current version of the article. Then look at a version that is several edits and some time back. Perhaps look at two older versions, separated by multiple edits. If the same information is present in both (or all three) it is very likely to be correct.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#47 Skylark

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Posted 02 November 2011 - 08:28 PM

Skylark, do you have any stats on remission in Celiacs? I'd be interested in reading it, as far as I'm aware it is so rare its not even considered worth trying. But if you have a peer reviewed study that refutes that I'd like to read it.

I linked to my post in another thread with the peer-reviewed articles I could find on remission in the first page of this discussion. :) There may be more out there; the ones I found should give you an entry into the literature. I wasn't "journal article" careful to find everything.

Here's the link to my post again.
http://www.celiac.co...328#entry736328

I'd put remission as rare in typical GI celiac patients. The DH article suggests it's not so rare in DH folks. I suspect remission from gluten intolerance is more common. My own doctor says gluten intolerance comes and goes in many of his patients, with some going through super-sensitive phases as well. (He's a rare bird of a doctor. He actually listens to his patients and remembers what they say.)

In fairness, some of the scientific and mathematics articles on Wikipedia are quite good. I generally find the references at the bottom of Wikipedia articles to be the most useful part, though. For science, the peer-review process is flawed, but at least it's a little better controlled than is possible at Wikipedia.
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#48 beebs

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Posted 02 November 2011 - 09:28 PM

I linked to my post in another thread with the peer-reviewed articles I could find on remission in the first page of this discussion. :) There may be more out there; the ones I found should give you an entry into the literature. I wasn't "journal article" careful to find everything.

Here's the link to my post again.
http://www.celiac.co...328#entry736328

I'd put remission as rare in typical GI celiac patients. The DH article suggests it's not so rare in DH folks. I suspect remission from gluten intolerance is more common. My own doctor says gluten intolerance comes and goes in many of his patients, with some going through super-sensitive phases as well. (He's a rare bird of a doctor. He actually listens to his patients and remembers what they say.)

In fairness, some of the scientific and mathematics articles on Wikipedia are quite good. I generally find the references at the bottom of Wikipedia articles to be the most useful part, though. For science, the peer-review process is flawed, but at least it's a little better controlled than is possible at Wikipedia.


Thanks - I'll have a read!
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#49 IrishHeart

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Posted 03 November 2011 - 05:45 AM

okay, one more time.....

(1) Regarding Wiki: The brief history of celiac I provided for Heidi, thinking she may find it interesting since she mentioned her family tree, has been written up in various articles. I have provided a few to cross-reference.if anyone wants to check them. I think you will find the information is valid.

(2) No one is disputing what Heidi said about the differences between gluten intolerance and celiac. (In fact, I believe I said similar words early on in this thread). And if her research is valid, we would love to read it. She should, however, try to write with more clarity, so it seems more credible.

As an aside: while I understand that "most 21- year- olds" write this way, it does not make it "acceptable". It is not just 21- year- olds; I receive texts and emails all the time from people of all ages, who write in this shorthand, ungrammatical manner.

This style of "communication" can sometimes leave the reader confused.

OMG Any1 cn do ths but it duz nt make it rite yo. ;)


and (3)I thought the Brief History of Celiac Disease would be enlightening, that's all! I certainly did not mean to cause such a controversy. :rolleyes: Now, can we move on to the topic at hand because it is also very interesting.

So,
I read the journal summaries you provided, Skylark. Thank you for taking the time to post them. :)

Sadly, remission is not a CURE, however. :(
I mean, aren't those of us who have recovered the villi in the intestines IN remission?

I still have hope that researchers develop a vaccine for future generations. :)

Heck, I still have hope that doctors in this country become better informed about celiac disease so a swift DX can be made. Most of us suffered for years needlessly.

This thinking that prevails on the internet about "healing a leaky gut means even diagnosed Celiacs can resume a gluten-filled diet" makes me fearful that those young people will suffer the ill-effects later in life.

And finally, (4) as you all have pointed out, ANYONE with a computer can Blog freely and seem like an authoritative voice on just about any topic. I have seen my share of wacko theories as I researched my symptoms endlessly for three years trying to figure out what had struck me down and altered my life so dramatically. It was the reason I was led to CELIAC.COM so many times. :) This site can be the most valuable resource for someone looking for answers. This is WHY it so important that what we write and discuss here has merit and validity.

Much has been written about "leaky gut protocols" and "healing from food intolerances". Does this apply to the autoimmune component of CELIAC? No one has said "YES!" and provided PROOF of this ability to recover and resume a regular diet without LONG term consequences.

Have they? :blink: No.

Until then, I think it unwise FOR A CELIAC to resume a gluten-filled diet. JUST MY HUMBLE OPINION.

The article Skylark provided the link to concludes:

"up to 10% of celiac disease patients diagnosed in childhood can spontaneously recover a normal villous architecture after a long period of normal diet without retaining any clinical or biological sequelae of celiac disease. The persistence of immunological stigmata of celiac disease and the risk of relapse indicate, however, that this remission state must not be considered as a definitive recovery but as a return to latency that requires a regular follow-up. Most of the patients with celiac disease diagnosed in childhood who resumed a normal diet, however, have an active celiac disease at adulthood, even in the absence of symptoms. These patients should be screened for the presence of villous atrophy and osteopenia, and should be advised to return to a GFD in the case of persisting villous atrophy."

(*Italics are mine.)


What I conclude from this particular summary is....you're taking a substantial risk for FUTURE health problems if you resume a gluten-free diet and that the majority of these people had ACTIVE celiac disease.

This does not mean the other 10% did not have health complications just because there is no villous destruction.

This is exactly what people who have gluten intolerance/sensitivity report on this site constantly. Maybe there is no active celiac, but they suffer major gluten-related health problems nonetheless.

(10% of exactly how many total celiac patients were studied ?? This is just one of several questions I had)

I don't know, guys. Would you be comfortable telling someone to go ahead and resume a regular diet, knowing the potential risks involved?

Me neither. :unsure:
Cheers,
IH
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"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 idiots could fly, the sky would be like an airport.”― Laura Davenport

"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


#50 domesticactivist

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Posted 03 November 2011 - 07:41 AM

I <3 IrishHeart! That was exceptionally well said.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#51 heidi g.

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Posted 03 November 2011 - 09:11 AM

OK now you want to hear my 21 year old side- first of all its just a hypothesis and just because you say things are not possible doesn't mean they aren't. i never said to not eat gluten free i was seeing if its possible to heal and eat normally once again because I BELIEVE that celiac disease and gluten intolerance are two different things. i believe celiac disease is permanent and gluten intolerance is developed by leaky gut, intestinal inflammation, etc. i don't really care to make sure all my grammar is perfect on a celiac website. you can make fun of a 21 year old all day and night apparently but at least im trying to do something good with my life and I've studied my butt off in high school i had prom less nights so i could help people. but if my patients are all going to be like you, i think id do alot better changing my major to psychology because I'd lose my head. get off your butt and try to do something useful instead making fun of someone who is and maybe go to college for a semester and find out that wikipedia is NOT a reliable site.
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#52 Skylark

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Posted 03 November 2011 - 09:51 AM

OK now you want to hear my 21 year old side- first of all its just a hypothesis and just because you say things are not possible doesn't mean they aren't. i never said to not eat gluten free i was seeing if its possible to heal and eat normally once again because I BELIEVE that celiac disease and gluten intolerance are two different things. i believe celiac disease is permanent and gluten intolerance is developed by leaky gut, intestinal inflammation, etc. i don't really care to make sure all my grammar is perfect on a celiac website. you can make fun of a 21 year old all day and night apparently but at least im trying to do something good with my life and I've studied my butt off in high school i had prom less nights so i could help people. but if my patients are all going to be like you, i think id do alot better changing my major to psychology because I'd lose my head. get off your butt and try to do something useful instead making fun of someone who is and maybe go to college for a semester and find out that wikipedia is NOT a reliable site.

You're making good points, but you are undermining what you are trying to say with arrogance. For starters, it takes a trivial amount of effort to hit the shift key and type with proper grammar. Are you trying to say that we are not worth the trouble? I thought I had some respect for you as a poster, but you just fell seriously in my estimation if that's how you feel. I have another hint for you. The janitor who keeps your classrooms tidy so you can learn is also "trying to do something good with his life." So is the guy who drives the bus you take to school, and the mechanic who keeps your car running so you can get to and from the hospital. You are not a special snowflake and the sooner you learn some humility the better a doctor you will be.

As far as gluten intolerance vs. celiac, you need to do a lot more reading. There is a very clear continuum from some types of genetic gluten intolerance through to celiac and total villous atrophy. Studies on siblings and children of celiacs show progression from mild gluten intolerance to seroconversion and villous damage if the child keeps eating wheat. There are other types of gluten intolerance with somewhat different molecular mechanisms that probably don't lead to celiac, like sensitivity to wheat germ agglutinin, sensitivity to FOS in wheat, or reactions to gliadorphin.

@Irishheart, I believe in the articles "remission" means a person is eating a normal diet with no symptoms or villous damage. I was actually more impressed by the possibility of occasional recoveries when I heard Markku Mäki speak at a symposium. He has seen it in clinical practice, and it's the experiences of clinicians like Mäki that are providing hope for a celiac vaccine and cure.

Do you tell people to try eating gluten? No. Most celiacs will experience a relapse and conservatism is obviously the wise course of action; however, I don't think denying that some people go into "remission" where they completely stop having symptoms from gluten is helpful either.
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#53 kareng

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Posted 03 November 2011 - 10:15 AM

OK now you want to hear my 21 year old side- gut, intestinal inflammation, etc. i don't really care to make sure all my grammar is perfect on a celiac website.



All I was trying to say is that it is very hard to read some of your posts and understand what you are trying to say. You are trying to explain things that can be quite complex and hard to understand, if written well. I think some of people's misunderstanding of your ideas about gluten intolerance could be because they were hard to read. Hard to tell when one idea ends and the next begins.
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#54 Gemini

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Posted 03 November 2011 - 10:43 AM

Do some Googling. There are med schools that do a combined program of BA/BS MD, accepting kids out of high school. Most programs are 6-8 years. I can't really find any details on how they choose who to weed out over time, so it's a little curious.

It is, however, my expectation that anyone fully in the medical portion would be able to use capitalization, punctuation, grammar, and know the difference between their, they're, and there.

And someone professing to study the disease ought to know that it is celiac disease, not the plural form.


Thanks, Jestgar, for stating the obvious. Anyone with such poor writing skills could not possibly be in any medical school that would turn out an actual MD....not that an actual MD is much help in diagnosing Celiac Disease. :P

As far as anyone being able to totally recover from Celiac and eat gluten again, I don't think so. I would believe that if someone had a wheat allergy but full blown Celiac Disease is an entirely different animal. I have the utmost respect for Skylark as she seems to be one of the more intelligent posters to this forum and has always contributed valuable information but I just cannot agree with this notion of a Celiac recovering to that point. I went to the age of 46 before a diagnosis was made and my body was trashed by then. It took me 3 years to recover fully and now I have 4 autoimmune diseases from having gone so long without a diagnosis. My Sjogren's Syndrome has not improved that much and I suffer with it daily, even though I never cheat and am strict with my diet. So anyone contemplating eating gluten again...good luck with that. You will live to regret that decision, trust me.
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#55 IrishHeart

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Posted 03 November 2011 - 04:09 PM

OK now you want to hear my 21 year old side- first of all its just a hypothesis and just because you say things are not possible doesn't mean they aren't. i never said to not eat gluten free i was seeing if its possible to heal and eat normally once again because I BELIEVE that celiac disease and gluten intolerance are two different things. i believe celiac disease is permanent and gluten intolerance is developed by leaky gut, intestinal inflammation, etc. i don't really care to make sure all my grammar is perfect on a celiac website. you can make fun of a 21 year old all day and night apparently but at least im trying to do something good with my life and I've studied my butt off in high school i had prom less nights so i could help people. but if my patients are all going to be like you, i think id do alot better changing my major to psychology because I'd lose my head. get off your butt and try to do something useful instead making fun of someone who is and maybe go to college for a semester and find out that wikipedia is NOT a reliable site.



Heidi, I think you keep missing my point for some reason and I have tried valiantly to make it clear. I thought you'd find the history of celiac of particular interest. Did you read it? No, you rudely dismissed it from the beginning and scoffed it.

Instead, you chose to focus on the fact it came from wiki. I explained over and over that those citations are valid. I provided other sources with the SAME information in case wiki was not a site you trust.

I also said that as an English Professor myself, I would not accept it as a valid research site alone, but if the information is cross-referenced in another publication, it's acceptable.

You made some major claims about research you have done and I encouraged you to write about it. I am not sure how that sincere suggestion was misinterpreted.

If you read carefully all that I have written, you would see I was trying to offer some information that you might find helpful and interesting.

Sorry if you are upset; but it does not help your case to say what you just said here. No one made fun of you; we suggested you express yourself more clearly so you are credible.

Some question that you are even in medical school, but if you look back earlier in the thread, you will see I have congratulated you for attending.

Skylark has graciously addressed the issue about the gluten intolerance spectrum, so I won't belabor it anymore.

As for the use of "text-speak", I BELIEVE it inappropriate for this forum. Many people --some from all over the world--are trying to learn and discuss topics on here and we need to communicate effectively. I do not care how old anyone is---it is NOT an effective means of communication. JMHO (Just making things light now because clearly, you are missing that part. Humor is not the same as "making fun".)

Best wishes with school. We need better doctors in this country for sure.
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"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 idiots could fly, the sky would be like an airport.”― Laura Davenport

"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


#56 heidi g.

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Posted 03 November 2011 - 04:54 PM

I am Just tired of being brought down. I'm just trying to see if it's possible... But i will give my props to Irish heart! I apologize, but i did check out your sources and i can see where your coming from. I guess in all this midst I am trying to just give myself hope that it can go away :( I just feel that everyone is different and has different opinions. I apologize for my horrible grammar and lazy punctuation and sorry for the attitude I have just had such a rough day! Life can be so stressful. Please, if you find anything new, send me the link or source. I apologize
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#57 psawyer

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Posted 03 November 2011 - 04:56 PM

As for the use of "text-speak", I BELIEVE it inappropriate for this forum. Many people --some from all over the world--are trying to learn and discuss topics on here and we need to communicate effectively. I do not care how old anyone is---it is NOT an effective means of communication. JMHO (Just making things light now because clearly, you are missing that part. Humor is not the same as "making fun".)

Speaking as a moderator, what IrishHeart said here is very true. Not everybody speaks English as their first language. Many are struggling with the brain fog caused by gluten and are looking for answers. Many are older people who just aren't part of today's "text message" world. We grew up with snail-mail letters written on paper with a pen, and telephones that were wired into the wall and could only handle voice communications. Even at 57, I can grasp most textisms, but deliberately avoid them here. U can C Y if U R 4 clarity. ;)

Edit: Heidi and I were both posting at the same time. I had not seen her post immediately preceding this one when I posted.

Edited by psawyer, 03 November 2011 - 05:20 PM.

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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#58 heidi g.

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Posted 03 November 2011 - 05:01 PM

I apologize Kareng i went back and reread some of my things and i got confused as well and Im the one who wrote it! I don't wish to be one of those doctors who assume things. I want to be able to listen to everything a patient has to say. I have had some pretty rude doctors who rush, and i don't want to turn into them! Most everyone has good points. Honestly i don't even want to be in school for this i want to be a therapist. My father is a doctor so he just pushes me to do what he loves, and i get so frustrated. erggg sorry for venting
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#59 Skylark

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Posted 03 November 2011 - 05:02 PM

I am Just tired of being brought down. I'm just trying to see if it's possible... But i will give my props to Irish heart! I apologize, but i did check out your sources and i can see where your coming from. I guess in all this midst I am trying to just give myself hope that it can go away :( I just feel that everyone is different and has different opinions. I apologize for my horrible grammar and lazy punctuation and sorry for the attitude I have just had such a rough day! Life can be so stressful. Please, if you find anything new, send me the link or source. I apologize

Apology accepted on my part! Your typing is so much easier to read this way. Life IS stressful, particularly school, and you'll find tremendous support on this board. We just like to be treated well, like everyone else. B)

Your celiac will probably not go away if you are positive for antibodies and villous atrophy, although I do believe that you are trying the right things. You might give that desensitization case study a glance, but if you try it in ten years, be ultra careful. You could make yourself very ill. http://www.ncbi.nlm....pubmed/16388719 My wrecked thyroid is evidence that gluten is no joke. I had a childhood "wheat allergy", started eating wheat again as an adolescent, and didn't figure out it was making me sick until my mid 30s. By then, the damage was done.

What WILL happen for sure is that you will get used to the diet and wheat will gradually cease to even look like food. At this point, after six years gluten-free, the diet is complete habit and I don't even worry about it most of the time. You will be a great doctor for celiacs, because so many of us do not get any compassion from doctors who put us on the diet. You'll be appalled if you take the time to read people's stories around here.
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#60 heidi g.

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Posted 03 November 2011 - 05:06 PM

I understand. See what i am confused about though is my antibodies were normal. I was reading earlier that several things can cause villi damage. Candida, leaky gut, and the gluten intolerance. Now, i read this on a few internet sites so i don't know if that's exactly true. Does anyone know of other causes of villi damage?
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