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


lucia

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heidi g. Contributor

my teachers do not let us take information from wikipedia. guess there was a problem with their site not always being completely truthful. anyways- celiacs disease can go away in a child. ive interviewed 26 adults who have had celiacs disease as a child and it has disappeared around age 16-25 and has not come back so far. 1 woman, however, has had her celiacs disease reappear at age 28. the rest are living fine. the body is a mystery and anything can happen to it. it can magically heal its self if it wants. you can believe what you want of course but i will continue to study this disease from numerous different sources. i have looked on the internet of course but i rather interview actual gi specialists and nutritionists who actually deal with it on almost a daily basis. not wikipedia lol

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jswog Contributor

i rather interview actual gi specialists and nutritionists who actually deal with it on almost a daily basis. not wikipedia lol

But there are VERY VERY few GIs or nutritionists who do deal with this on even an almost daily bases and even fewer have much of an understanding of this disease. Why do you think it takes on average as long as it does for people to get a proper diagnosis?

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jswog Contributor

And, BTW, you never did answer Irish's question about where you are in med school. And I'm a bit surprised that you are 21 and already in med school. Most people haven't even finished a Bachelor's degree by that age...

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Skylark Collaborator

And, BTW, you never did answer Irish's question about where you are in med school. And I'm a bit surprised that you are 21 and already in med school. Most people haven't even finished a Bachelor's degree by that age...

This thread just continues to appall me. You can't be pressing people to reveal personal details on the Internet. Her location and school are nobody's business but her own. Besides, finishing ones bachelors at 21 is normal if you go into a 4-year program right out of high school. There are also some countries where medical school is done directly out of high school as a bachelors.

And by the way, Wikipedia is notoriously unreliable because any jackass with a computer and an opinion can edit it. They try to keep the garbage out, but misinformation can stay for quite a while until it gets weeded out.

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IrishHeart Veteran

This thread just continues to appall me. You can't be pressing people to reveal personal details on the Internet. Her location and school are nobody's business but her own. Besides, finishing ones bachelors at 21 is normal if you go into a 4-year program right out of high school. There are also some countries where medical school is done directly out of high school as a bachelors.

And by the way, Wikipedia is notoriously unreliable because any jackass with a computer and an opinion can edit it. They try to keep the garbage out, but misinformation can stay for quite a while until it gets weeded out.

Wow... hold on everyone. Please.

Excuse me please, but I was congratulating this young gal for attending medical school. That's all I said!! :blink:

I think it's GREAT!

The question was not at all meant to be intrusive. It was conversational.

Wow...

I am being totally misunderstood here.

Before you all get in my face about using wikipedia (and by the way, not that it matters, but I am a retired English Professor and I KNOW wikipedia isn't considered the best place for research. but, thanks.) I was just using it to quickly provide some background info.

The information I posted on how celiac came to be a "medical diagnosis" is pretty interesting and can be found in a variety of RELIABLE sources, most recently ON THIS SITE:

https://www.celiac.com/articles/22013/1/Willem-Karel-Dicke-Pioneer-in-Gluten-free-Diet-in-the-Treatment-of-Celiac-Disease/Page1.html

and in the remarks of the Dr. Stefano Guandalini, M.D. of the Celiac Disease Center at the University of Chicago.

Open Original Shared Link

I merely used wikipedia as it was quicker. In fact, it looks like someone posted to wikipedia from HIS article.

But I CAN provide MORE sources if you wish....gosh, I was only trying to help.

But if you guys are going to get grouchy about it, :rolleyes: I can be of more use elsewhere....see ya.

best wishes!

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IrishHeart Veteran

my teachers do not let us take information from wikipedia. guess there was a problem with their site not always being completely truthful. anyways- celiacs disease can go away in a child. ive interviewed 26 adults who have had celiacs disease as a child and it has disappeared around age 16-25 and has not come back so far. 1 woman, however, has had her celiacs disease reappear at age 28. the rest are living fine. the body is a mystery and anything can happen to it. it can magically heal its self if it wants. you can believe what you want of course but i will continue to study this disease from numerous different sources. i have looked on the internet of course but i rather interview actual gi specialists and nutritionists who actually deal with it on almost a daily basis. not wikipedia lol

I look forward to reading your published studies/interviews someday! It will be interesting to read them.

When you say that Celiac Disease has disappeared, do you mean they can consume gluten with no villous atrophy? This is AMAZING and you may want to write this up for the Celiac Sprue Foundation or GIG. I am serious. Send it to Dr. Fasano. These Celiac Specialists really need to know that people diagnosed with Celiac Disease (considered a treatable, but permanent autoimmune disease you do not "outgrow") are able to consume gluten without intestinal damage.

As to the body magically healing itself, well, gosh, I have hoped for that for myself and so many others who suffer terribly.

We need someone to do the research, so please, continue your studies!

Please see my previous post regarding why I posted from wikipedia.

I wish you well.

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Jestgar Rising Star

And, BTW, you never did answer Irish's question about where you are in med school. And I'm a bit surprised that you are 21 and already in med school. Most people haven't even finished a Bachelor's degree by that age...

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.

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Oscar Apprentice

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.

My own grouchy thoughts are pretty much the same as that.

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kareng Grand Master

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.

I will say Heidi, that I find some of your posts very hard to read. Our English doesn't need to be perfect here, but some punctuation, capitalization, paragraphs and full sentances make it easier to get a point across. Also, better grammer gives you more credibility.

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Jestgar Rising Star

so i decided to do my own research since i am in medical school and resources are alot easier to get in my schools medical library.

Feel free to post your sources. I'm at a university with a med school and have online (and paper) access to pretty much all reputable journals and books. Be sure to post them in the order you thought of questions so I can follow your train of thought.

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IrishHeart Veteran

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.

Whew--thanks for bringing this up. :) I dared not say anything since I was already placed in a position of defending myself. I could kick myself for trotting out the wiki article. (what WAS I thinking? :rolleyes: )

I hope that by providing other sources that concur with the brief history of celiac that I have redeemed myself :rolleyes:

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kareng Grand Master

Whew--thanks for bringing this up. :) I dared not say anything since I was already placed in a position of defending myself. I could kick myself for trotting out the wiki article. (what WAS I thinking? :rolleyes: )

I hope that by providing other sources that concur with the brief history of celiac that I have redeemed myself :rolleyes:

I really had to control my impulse to get out my red pen, though. :lol:

I think Wiki is a good place to get some starting info. Then you can validate it. Or it gives you an idea of where else to look for info.

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IrishHeart Veteran

My own grouchy thoughts are pretty much the same as that.

:lol: thanks for the giggle...you made my day!

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Jestgar Rising Star

Whew--thanks for bringing this up. :) I dared not say anything since I was already placed in a position of defending myself.

If she is in one of these programs now is as good a time as any to start embracing good communication. Adhering to proper written form is important, as is documenting your sources and providing them for others. The internet and ease of access to information has taken us way beyond the stage of just believing what someone tells you - you have to be able to prove it.*

*The preceding is my opinion and not a documented study. :)

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IrishHeart Veteran

I think Wiki is a good place to get some starting info. Then you can validate it. Or it gives you an idea of where else to look for info.

While I would not accept a wiki article as valid in a research paper from students, the articles FROM OTHER SOURCES that I provided for Heidi to read are reliable/valid and say the exact same thing.

ALL OF THE facts in the summary have been cited and referenced and appear to be "legit".

I just thought the brief history of how a DX of celiac evolved might intrigue her.

The point is lost now anyway. :rolleyes:

Believe me, I have TONS of medical articles bookmarked and could have easily "gone there"; I was being lazy and silly me, trying to be helpful...Ah well, dinner is ready. ;) Cheers, all!

IH

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IrishHeart Veteran

*The preceding is my opinion and not a documented study. :)

:lol: :lol: :lol: perfect

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lucia Enthusiast

One of the unfortunate things about this thread is that "celiac disease" is being conflated with "gluten intolerance". What Heidi G. says is true: "theres a difference between celiacs disease and gluten intolerence." That's well-established. The best explanation of this that I've seen comes from Dr. Shelia Crowe here:

Open Original Shared Link

A second unfortunate thing about this thread is how disrespectful it's become. I'm not used to that on the celiac board, and it's very off putting. Discussion of the issue(s) has veered off into attacks on a 21-year-old's use of grammar. C'mon, really? All 21 year olds talk like this online; it's quickly written and effective enough.

Heidi G. got her point across pretty clearly actually. And what she says lines up with the points of Dr. Shelia Crowe I refer to above (on gluten intolerance) and with those of a working research biologist who took the time to post links to current research in reputable journals (on celiac), so I have no issue respecting what she says.

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beebs Enthusiast

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. Not that I'd think it was worth it anyway - surely by the time you have worked out you aren't one of the lucky few you would have done damage???

Also - for celiacs to go back to eating gluten - its just so dangerous. Forget the cancer rate for a second. But I guarantee you that developing other autoimmune diseases as a result of undiagnosed celiac is common. I now have 3 ad there are plenty of people on this site that have more, and believe me - celiac is the least of my worries.

And depending on which studies you read gluten consuming celiacs have between 9 and 39 times the rate of stomach cancer- not sure about you guys. But I think I'd err on the side of caution.

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beebs Enthusiast

my teachers do not let us take information from wikipedia. guess there was a problem with their site not always being completely truthful. anyways- celiacs disease can go away in a child. ive interviewed 26 adults who have had celiacs disease as a child and it has disappeared around age 16-25 and has not come back so far. 1 woman, however, has had her celiacs disease reappear at age 28. the rest are living fine. the body is a mystery and anything can happen to it. it can magically heal its self if it wants. you can believe what you want of course but i will continue to study this disease from numerous different sources. i have looked on the internet of course but i rather interview actual gi specialists and nutritionists who actually deal with it on almost a daily basis. not wikipedia lol

This is interesting actually, only because I (and lots of people on here) have read more peer reviewed articles on Celiac disease than we care to remember and for myself, I have never come across one that correlates with your study. It will be peer reviewed of course? You can't just expect people to take your word for it. I'm not trying to be mean but it is true. Ever other medical study states the exact opposite of what you have just said, can you please explain that to us?

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beebs Enthusiast

my teachers do not let us take information from wikipedia. guess there was a problem with their site not always being completely truthful.

Dear oh dear, this! Sorry, but the first thing anyone is told in any Uni course over here is that you aren't allowed to get any information off the internet, not just wikipedia, is that not the case where you are?

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psawyer Proficient

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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Skylark Collaborator

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.

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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beebs Enthusiast

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.

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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IrishHeart Veteran

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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domesticactivist Collaborator

I <3 IrishHeart! That was exceptionally well said.

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