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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Amazing Lectures At The Gluten Summit
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Just finished listening to Dr. Amen.  Is there any wonder why I love this man.  He literally saved my sanity.

 

Colleen

 

"Find the healthiest person you can stand" and so many other little things. The guy isn't just amazingly brilliant. He's hilarious. :lol:

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Getting back to the Summit, it's not a 'celiac' summit after all.  And we're all big people here so I don't think we need to worry about the fact that some of them are selling something.  At least the lectures are not coming across as crass advertising.

 

Personally I found it quite fascinating that doctors such as David Perlmutter are finding they can assist people by having them eliminate gluten from their diets.  Maybe it's not a cure for Alzheimer's but at least we know it's not an impossible challenge to eat gluten free.  Another doctor, Natasha Campbell-McBride, works with autistic children and other people with compromised digestion.  Her book on the GAPS diet has really helped me, probably as much as going gluten free, so if found her talk really interesting.   

 

On another note, it's unfortunate that some of the recordings have such poor quality that it was difficult it make out what they were saying. 

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I feel for all the medical practitioners who will be dealing with people bringing them information that they got from this summit.  There is far too much talk about studies without actually giving the references.  Some of these, I believe, are ones that I have heard debunked elsewhere.  That's a problem with medical information and the internet in general and here is a huge dose of it.

 

In fairness, Marsh did say English beer and not all beer.  I don't know if there are any studies about English beer being low gluten, but I doubt it.   After all, it is in England where wheat starch is considered O.K.  Does anyone know how old he is?  He may not have kept up.  It wasn't that long ago that 200 ppm was considered safe.

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I ended up watching the day 5 video on colostrum and once again, the "reference" that we get is the speakers' anecdotal research. I am terrified by the idea of people with autoimmune diseases, like celiac disease, watching Dr. Keech's video and deciding to take bovine colostrum as a treatment. I take care of newborn and premature babies and it's scary enough to see how many so many babies are being birn with milk protein allergies/intolerances. This Summit is providing information about a medical treatment for which there is no long term follow up. I searched the entire pubmed database and there is not one published study on the usage of bovine colostrum in people with celiac disease or NCGS. I did find a study though where colostrum caused an increased risk of leaky gut in distance runners.

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I ended up watching the day 5 video on colostrum and once again, the "reference" that we get is the speakers' anecdotal research. I am terrified by the idea of people with autoimmune diseases, like celiac disease, watching Dr. Keech's video and deciding to take bovine colostrum as a treatment. I take care of newborn and premature babies and it's scary enough to see how many so many babies are being birn with milk protein allergies/intolerances. This Summit is providing information about a medical treatment for which there is no long term follow up. I searched the entire pubmed database and there is not one published study on the usage of bovine colostrum in people with celiac disease or NCGS. I did find a study though where colostrum caused an increased risk of leaky gut in distance runners.

 

 

I also searched for information about bovine  colostrum in 2010 because this was recommended to me by "an alternative practitioner". I balked at it.

 

I know there is no evidence of its ability to heal a leaky gut. More anecdotal evidence and "may" and "could" offered in these interviews than solid info. I found some of the experts to be extremely interesting and helpful but some others....just plain ridiculous. 

 

I stopped listening to the recordings. Too much alarmist information, Too much speculation. Too much fear-mongering. And too much of "dr tom" stroking his own ego and justifying his alarmist rhetoric (yup. I said it) This is a forum for ideas and opinions after all.

 

The whole "this young man MAY HAVE died from dairy cross-reactivity to gluten" is the most absurd, unfounded statement that has me still scratching a hole through my head. How can  he say such a thing?

 

The problem is, most people listening have no medical background (as you do,  Jess) nor do they do any research.

 

I saw the "testimonial" from a mental health practitioner who claims she uses IgG testing to help children with anger/anxiety issues.

Really? for what?!!

 

 Here's the dilemma--those tests are not valid. There are no tests for "gluten sensitivity" or "food intolerances".  

Yes, those  "functional med" practitioners will tell you they are, but if you take the time to look at the science --you will find it's pure bunk.

 

http://www.sciencebasedmedicine.org/igg-food-intolerance-tests-what-does-the-science-say/

 

Do I think some children with these issues would benefit from a gluten free diet? yes!

We all know gluten causes these behavioral problems-- if a child has gluten intolerance.

But do I think it is okay for these "practitioners " to have their clients spend hundreds of dollars on these bogus tests? Absolutely not.

 

I fear that more people will assume the worst from some of these presentations.

But you know what? People will believe what they want..... sigh.

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That bovine colostrum guy did a really good job of sounding scientific.  Thanks for researching that Jebby.  I wonder how much they charge for that stuff?

 

Today someone said that sprouts contain oxygen and when you eat them you instantly put oxygen into your blood so that you can supply your brain with oxygen.

 

O'Bryan just buys all that crap.  It's amazing.

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Most folks on this board will offer testimonials about vitamins and supplements they take how they have changed their lives and recommend other do the same. However, there is no actual science to prove ingesting vitamins( as a dietary supplement) has any benefits.

 

They truly are the ultimate placebo. This is usually where the antidotal evidence is inserted, I feel so much better and have so much more energy, etc. Most folks figure it can't hurt to take a multi vitamin, maybe not, but it certainly cannot be proven they help.

 

Is there science evincing digestive enzymes or probiotics help celiac ? I can find actual scientific study's linking probiotics to  reduced heart disease, nothing regarding celiac. It is interesting reading people pontificating, about other people pontificating.

Our children learn the art of salesmanship and to negotiate with their parents, from a very young age. That in itself should prepare us to be judicious with what others will attempt to "peddle " . The gene pool has been thinned out by ignorance since man/woman has walked the planet, 5 minutes on the internet will demonstrate this.

 

Yet as Schopenhauer stated,

"All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident."

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Most folks on this board will offer testimonials about vitamins and supplements they take how they have changed their lives and recommend other do the same. However, there is no actual science to prove ingesting vitamins( as a dietary supplement) has any benefits.

 

They truly are the ultimate placebo. This is usually where the antidotal evidence is inserted, I feel so much better and have so much more energy, etc. Most folks figure it can't hurt to take a multi vitamin, maybe not, but it certainly cannot be proven they help.

 

Is there science evincing digestive enzymes or probiotics help celiac ? I can find actual scientific study's linking probiotics to  reduced heart disease, nothing regarding celiac. It is interesting reading people pontificating, about other people pontificating.

Our children learn the art of salesmanship and to negotiate with their parents, from a very young age. That in itself should prepare us to be judicious with what others will attempt to "peddle " . The gene pool has been thinned out by ignorance since man/woman has walked the planet, 5 minutes on the internet will demonstrate this.

 

Yet as Schopenhauer stated,

"All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident."

Pontificating...?!  You are implying that those of us expressing an opinion here are "pontificating"? Gee whiz. ^_^

 

The administrator of this forum thinks we are all expressing our valued opinions, worthy of discussion and he heartily encourages us to do it.

Often. (Honest, you can ask Scott if you do not believe me!)  :lol: 

 

Okay, I was with you up until....... they "have no benefits". There is science that proves appropriate supplementation is beneficial.

Pub med is loaded with journal articles. 

 

Had I NOT supplemented with B-12, Folate, Vit D and calcium, all under medical supervision, I would still have major deficiencies and downward- spiraling bone density.

There are many reasons why taking a B-complex is beneficial to celiacs who are recently diagnosed.

 

If you had listened to Dr. Fasano's interview, you would have heard why a health microbiome with good bacteria is very beneficial for celiacs--and everyone else's--gut and overall body health.

 

What happens when people supplement because of a medical necessity is hardly a placebo effect. It reverses deficiencies.

(Offered IMHO, and totally not pontificating here).. 

 

Your quote only applies to those things that are ultimately PROVEN as truths.

 

Are people always wise enough to discern the truth from the as- yet, unproven? Nope.. 

.

Discerning the truth is difficult when one is frightened, sick, bullied, cajoled or unenlightened. People want to believe "intelligent-sounding"

people with a label of "doctor" (no matter how that word it is used).

 

I'm not stupid, but I was persuaded by some pretty savvy people who called themselves "doctors" when I was very ill to pay for tests and supplements that had no validity. One was a prestigious "functional med" doctor with a fancy clinic. He had credentials out the wazoo.

.....yet, he was very wrong about my diagnosis and kept me ill for 10 months longer than I had to be.. Another was a Rheumatolgist who

was outraged when I questioned why he wanted me to take powerful anti-cancer drugs for my joint pain. (turns out, he was VERY wrong about

his "diagnosis" of AS.) Naturopaths suggested various "blood type diets", colon cleansing,heavy metals chelation therapy etc --all of which I balked at--

but when they explained to me the "many health benefits" in such a convincing tone, well, they sure made that snake oil sound like "magic"!!

 

Had it not been for some very good information about celiac --on this forum and in Pub med articles--I would probably be dead by now.

 

Discussion about the many theories that circulate on the internet regarding celiac may be very helpful to those who are still sick and searching for the truth about what ails them. Just because some of us are

more likely to research everything to death before believing it's "good for us" doesn't mean others will.

 

Okay, my pontificating is finished now. :)

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There is a study, though small, that shows that probiotics help celiac disease: http://www.ncbi.nlm.nih.gov/pubmed/23314670, and a larger study on IBS: http://www.ncbi.nlm.nih.gov/pubmed/16863564

 

I don't try things unless I have some good evidence of efficacy.  I understand where you are coming from, Tbolt47.  However, there is a difference between thinking analytically and being dismissive.

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Pontificating...?!  You are implying that those of us expressing an opinion here are "pontificating"? Gee whiz. ^_^

 

The administrator of this forum thinks we are all expressing our valued opinions, worthy of discussion and he heartily encourages us to do it.

Often. (Honest, you can ask Scott if you do not believe me!)  :lol: 

 

Okay, I was with you up until....... they "have no benefits". There is science that proves appropriate supplementation is beneficial.

Pub med is loaded with journal articles. 

 

Had I NOT supplemented with B-12, Folate, Vit D and calcium, all under medical supervision, I would still have major deficiencies and downward- spiraling bone density.

There are many reasons why taking a B-complex is beneficial to celiacs who are recently diagnosed.

 

If you had listened to Dr. Fasano's interview, you would have heard why a health microbiome with good bacteria is very beneficial for celiacs--and everyone else's--gut and overall body health.

 

What happens when people supplement because of a medical necessity is hardly a placebo effect. It reverses deficiencies.

(Offered IMHO, and totally not pontificating here).. 

 

Your quote only applies to those things that are ultimately PROVEN as truths.

 

Are people always wise enough to discern the truth from the as- yet, unproven? Nope.. 

.

Discerning the truth is difficult when one is frightened, sick, bullied, cajoled or unenlightened. People want to believe "intelligent-sounding"

people with a label of "doctor" (no matter how that word it is used).

 

I'm not stupid, but I was persuaded by some pretty savvy people who called themselves "doctors" when I was very ill to pay for tests and supplements that had no validity. One was a prestigious "functional med" doctor with a fancy clinic. He had credentials out the wazoo.

.....yet, he was very wrong about my diagnosis and kept me ill for 10 months longer than I had to be.. Another was a Rheumatolgist who

was outraged when I questioned why he wanted me to take powerful anti-cancer drugs for my joint pain. (turns out, he was VERY wrong about

his "diagnosis" of AS.) Naturopaths suggested various "blood type diets", colon cleansing,heavy metals chelation therapy etc --all of which I balked at--

but when they explained to me the "many health benefits" in such a convincing tone, well, they sure made that snake oil sound like "magic"!!

 

Had it not been for some very good information about celiac --on this forum and in Pub med articles--I would probably be dead by now.

 

Discussion about the many theories that circulate on the internet regarding celiac may be very helpful to those who are still sick and searching for the truth about what ails them. Just because some of us are

more likely to research everything to death before believing it's "good for us" doesn't mean others will.

 

Okay, my pontificating is finished now. :)

An opinion,  by definition need not be constructed  as a passive aggressive persuasive argument, nor does it need to be based in fact.Unless, I am mistaken forum members are not offering" legal opinions" nor" medical opinions" they typically offer their unique life experience and occasionally a hyperlink to support their action or inaction.

 

To your point, correcting a known vitamin/mineral deficiency

by augmenting your diet falls under the heading of " self evident truths ". As correcting any deficiency would. However, if your small intestines cannot assimilate/absorb the necessary vitamins/minerals from the food you eat, why would taking a " vitamin supplement " make a difference, unless of course a person is in fact able to absorb/assimilate. Fact is as you heal ,your small intestines function as designed and more efficiently.

 

Nearly every year the medical/scientific community comes up with some new cataclysmic  discovery, currently vitamin" D " deficiency causes every malady under the sun ( pun intended) . I do not know an individual who has had their year check up that isn't prescribed a  mega dose of vitamin " D ", for a duration of time. Yet milk, bread etc. has been supplemented with vitamin " D "  for decades. In the next couple of years it will be something else. Which segways into point about the medical" business". The medical profession is not a charitable concern, it is a business, in fact you would be hard pressed to actually find a true charity,or  non profit organization, that isn't classified as such for tax benefits. The unnecessary amount of testing done is motivated by the " not for profit " hospitals and an over litigious society we live in, assuming you reside in the US. Changing this will require tort reform legislation, not likely since a large % of  politicians practice law. This would be tantamount to a pay cut.

Business is the engine that drives society, if someone operates under any other understanding, you will most likely have a unsatisfactory experience. No matter what your undertaking is.

 

I think I have matched your pontification, balls in your court.

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Nope, I made my point. I'm good, thanks! :)

You will notice that I always say IMHO or I provide any scientific /research information when I post.

 

I would like to point out that you can make your point without being disrespectful.
and challenging. 
Edited by IrishHeart

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There is a study, though small, that shows that probiotics help celiac disease: http://www.ncbi.nlm.nih.gov/pubmed/23314670, and a larger study on IBS: http://www.ncbi.nlm.nih.gov/pubmed/16863564

 

I don't try things unless I have some good evidence of efficacy.  I understand where you are coming from, Tbolt47.  However, there is a difference between thinking analytically and being dismissive.

Interesting, although the first study was performed with infants not sure of the relevance to adults. I am fairly certain infants and the elderly have vastly different immunological responses vs. the 18 to 45 year old  crowd.

 

I have read a number of studies that believe a significant % of IBS may be celiac.

 

Thanks for the links

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Nope, I made my point. I'm good, thanks! :)

You will notice that I always say IMHO or I provide any scientific /research information when I post.

 

I would like to point out that you can make your point without being disrespectful.
and challenging. 

 

Of course you meant- IYHO. However in this thread alone you have disrespected and challenged the opinion( s) of others. Without the requisite " IMHO " preceding your opinion. I will respectfully submit, this is a passive aggressive way of challenging others to respond.

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I wonder what trolls eat.

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TBOLT:
Of course you meant- IYHO. However in this thread alone you have disrespected and challenged the opinion( s) of others. Without the requisite " IMHO " preceding your opinion. I will respectfully submit, this is a passive aggressive way of challenging others to respond.

 
 

Ouch.....I not only pontificate, I am passive-aggressive, too?.  :D  that's a big leap. 

 

Why? just because I presented an opposing position, based on valid medical and scientific research --in opposition to  the claim of some man that drinking milk causes suicide?? 

 

I have not openly challenged anyone to anything nor have I been rude to other members of the forum,

have I ? Nope.

 

Besides, I am pretty sure the real definition of passive-aggressive is not applicable to the situation.

 

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Interesting, although the first study was performed with infants not sure of the relevance to adults. I am fairly certain infants and the elderly have vastly different immunological responses vs. the 18 to 45 year old  crowd.

 

I have read a number of studies that believe a significant % of IBS may be celiac.

 

Thanks for the links

IF you would like to discuss IBS as un- diagnosed celiac or the effectiveness of vitamins, probiotics, enzymes, etc, please feel free to start a new topic. :)

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Interesting, although the first study was performed with infants not sure of the relevance to adults. 

 

No, it was not. " Twenty-two adult patients having 2 positives celiac disease-specific tests were enrolled."

 

I imagine you were confused by the name of the probiotic: Bifidobacterium infantis.

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No, it was not. " Twenty-two adult patients having 2 positives celiac disease-specific tests were enrolled."

 

I imagine you were confused by the name of the probiotic: Bifidobacterium infantis.

 

I imagine he did not even read the article. 

 

IMHO.... of course!

 

 

 

 

 

(I was waiting for you to come back all afternoon, Steph.   ^_^)

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TBOLT:

Of course you meant- IYHO. However in this thread alone you have disrespected and challenged the opinion( s) of others. Without the requisite " IMHO " preceding your opinion. I will respectfully submit, this is a passive aggressive way of challenging others to respond.

 
 

Ouch.....I not only pontificate, I am passive-aggressive, too?.  :D  that's a big leap. 

 

Why? just because I presented an opposing position, based on valid medical and scientific research --in opposition to  the claim of some man that drinking milk causes suicide?? 

 

I have not openly challenged anyone to anything nor have I been rude to other members of the forum,

have I ? Nope.

 

Besides, I am pretty sure the real definition of passive-aggressive is not applicable to the situation.

 

 

Stating a presenter practices " quackery " and is "not qualified " to comment is in fact disrespectful and challenging. I have not read many threads ,therefore I am not qualified to comment on weather you are rude to other posters.

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not vitamins ;)

I bet our tastes  are not too far apart, at present I am enjoying a vitamin infused, room temperature, English beer. 

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An opinion,  by definition need not be constructed  as a passive aggressive persuasive argument, nor does it need to be based in fact.Unless, I am mistaken forum members are not offering" legal opinions" nor" medical opinions" they typically offer their unique life experience and occasionally a hyperlink to support their action or inaction.

 

To your point, correcting a known vitamin/mineral deficiency

by augmenting your diet falls under the heading of " self evident truths ". As correcting any deficiency would.

 

 However, if your small intestines cannot assimilate/absorb the necessary vitamins/minerals from the food you eat, why would taking a " vitamin supplement " make a difference,

 

unless of course a person is in fact able to absorb/assimilate. Fact is as you heal ,your small intestines function as designed and more efficiently.

 

At least with vit B12, it is a digestion issue, as we age, and apparently with interstinal/stomache/gallbladder issues, we don't break it out of food appropriately.

but with the supplement, on an empty stomach, our intestines can absorb tiny amounts of if.  Hence the large dose, 1000 mcg or more, for the 3 or so mcg absorbed

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I imagine he did not even read the article. 

 

IMHO.... of course!

 

 

 

 

 

(I was waiting for you to come back all afternoon, Steph.   ^_^)

 

I don't think that he read my reply either.  I don't often have time to get on here more than once a day.  Sometimes I check if I've posted something like the above.  I don't like seeing such blatantly incorrect statements go without challenge.  Who would have infants taking capsules in a study?  You ever tried to get an infant to swallow a capsule?

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I don't think that he read my reply either.  I don't often have time to get on here more than once a day.  Sometimes I check if I've posted something like the above.  I don't like seeing such blatantly incorrect statements go without challenge.  Who would have infants taking capsules in a study?  You ever tried to get an infant to swallow a capsule?

 

pretty much like getting a cat to swallow one :D

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I don't think that he read my reply either.  I don't often have time to get on here more than once a day.  Sometimes I check if I've posted something like the above.  I don't like seeing such blatantly incorrect statements go without challenge.  Who would have infants taking capsules in a study?  You ever tried to get an infant to swallow a capsule?

 

 

Maybe he thought he was being funny?   Obviously, none of us got the joke.   :unsure:  

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