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Gentleheart

More About Dr. Kenneth Fine

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You say you are not here to judge or be judged, but your statement (that as a diagnosed celiac, gluten-free is not a lifestyle choice but essential to your survival) implies that for gluten-intolerants, it's a choice.

I didn't read it that way at all. Peter said nothing about gluten intolerant folks. He only stated his own situation. The rest came from you.

As doctor Phil says "There is no reality, only perception" If you choose to perceive such a benign statement as judgmental, maybe you should consider your own starting point at figure out why that would be.

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I think people can reading into anything that which they want to here. If you feel your are a second class citizen here because you have a gluten intolerance, I'm sorry for that.

Input here is a given freely to everyone equally.

Because I was diagnosed with Celiac through a biopsy and then found this site to figure out what it was, doesn't really give me any advantage here. Nor have I seen anyone treated differently in my time here.

IF there is a prejudice here, it's self perceived, in my opinion.

...the topic of this tread is Dr. Fine and his work.

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Having negative tests doesn't make you more or less sick or mean that this diet is optional. Gluten reactions are systemic and it makes sense that not everyone is going to be affected in their gut. I know a woman who was diagnosed many years ago when a positive response to the diet was the only test. Does that make her gluten-intolerant? If you apply the current gold standard that a positive biopsy is required to diagnose celiac then she is gluten-intolerant. The only test I put any stock in is a positive response to a gluten-free diet.

I appreciate everyone's opinions and pass no judgments at all on how or why you got here and I really don't care what tests you have or haven't had. We are all here because a gluten-free diet was our answer. I learn something new here every day.

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I found this abstract (see below) to an article, which has probably been referenced before on this site. It links the finding of type 2 transglutaminase in jejunal tissue with gluten ataxia. Since I have the DQ1 gene (as well as DQ2) and resulting migraines, etc., I find this interesting and actually pretty scary, since the TG2 antibody is also found in the brain tissue of gluten ataxia patients. However, my point on adding this to this thread is that TG2 antibodies ARE found in jejunal tissue, which would seem to back up Dr. Fine's findings and my test results from Enterolab.

If nothing else makes me commit to the gluten-free diet permanently, the thought of this stuff building up in my brain will do it for sure!

I am thankful for this forum and others I have found on the web. Without them, I think I would still be trying to figure out just what was wrong with me or thinking that it was all just the aging process.

Laurie

Neurology. 2006 Feb 14;66(3):373-7. Related Articles, Links

Autoantibody targeting of brain and intestinal transglutaminase in gluten ataxia.

Hadjivassiliou M, Maki M, Sanders DS, Williamson CA, Grunewald RA, Woodroofe NM, Korponay-Szabo IR.

Department of Neurology, Royal Hallamshire Hospital, Sheffield, UK. m.hadjivassiliou@sheffield.ac.uk

OBJECTIVE: To investigate the presence of autoantibody deposition against type 2 tissue transglutaminase (TG2; a reliable marker of the whole spectrum of gluten sensitivity) in the jejunal tissue and brain of patients with gluten ataxia and in control subjects. METHODS: The authors evaluated jejunal biopsy samples from nine patients with gluten ataxia and seven patients with other causes of ataxia for the presence of TG2-related immunoglobulin deposits using double-color immunofluorescence. Autopsy brain tissue from one patient with gluten ataxia and one neurologically intact brain were also studied. RESULTS: IgA deposition on jejunal TG2 was found in the jejunal tissue of all patients with gluten ataxia and in none of the controls. The intestinal IgA deposition pattern was similar to that seen in patients with overt and latent celiac disease and in those with dermatitis herpetiformis. Widespread IgA deposition around vessels was found in the brain of the patient with gluten ataxia but not the control brain. The deposition was most pronounced in the cerebellum, pons, and medulla. CONCLUSIONS: Anti-tissue transglutaminase IgA antibodies are present in the gut and brain of patients with gluten ataxia with or without an enteropathy in a similar fashion to patients with celiac disease, latent celiac disease, and dermatitis herpetiformis but not in ataxia control subjects. This finding strengthens the contention that gluten ataxia is immune mediated and belongs to the same spectrum of gluten sensitivity as celiac disease and dermatitis herpetiformis.

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I tell you, I must be the idiot of the century! I've been around here for over 3 years now, and the one thing I've never noticed was discrimination with respect to what brought someone here. Neesee, I feel terrible that you feel like an outsider. No one should feel like that here--this is our safe place!

I'm pretty familiar with the folks who post here, and I doubt if I could even tell you, except in the cases of a few old-timers, which are "diagnosed" Celiacs and which aren't. (reason being that some of us have told our stories to newbies numerous times) I've always been proud of the fact that we--all of us as a community--will jump to the aid of someone who comes here for help or information.

To me, when someone says that the gluten-free diet is "essential to their survival", I'm thinking that this is because the gluten-free diet is still a choice--whether one is "duly diagnosed" or not. We here represent just a small fraction of gluten intolerant/Celiacs. Many, many folks simply choose not to eat gluten-free and treat the symptoms--just like some people smoke, drink to excess or do any number of other things that are not in their best interest. In all honesty, if I didn't get such strong reactions I would have a much harder time sticking to the diet.

Thankfully, there is more and more known about the whole lexicon of gluten intolerance these days-- personally, I feel that we are, for want of a better description, the "practice" generation where Celiac is concerned in the great scheme of things. Still a lot more to be learned.

Don't want to sound schmaltzy, but can't we get back to trying to figure this stuff out as a team? Individual differences are inevitable--we're all coming from different places, circumstances, etc--and that's good. Shakes things up, makes for some facinating conversation and makes me think (which is a good thing!) :)

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I didn't read it that way at all. Peter said nothing about gluten intolerant folks. He only stated his own situation. The rest came from you.

As doctor Phil says "There is no reality, only perception" If you choose to perceive such a benign statement as judgmental, maybe you should consider your own starting point at figure out why that would be.

Sorry, I don't buy Dr. Phil.

My exact words WERE that "there is a perception of bias," and I did explain the context that would cause people to perceive bias. Sorry if I wasn't more clear, but I was attempting to explain that, although Peter is obviously not intending to be judgmental, his words could easily be seen as just that.

There have also been numerous posts on this board saying that people who "only" have gluten intolerance have less damage, have fewer problems, can afford to cheat, and other mis-perceptions that feed the idea that there such a bias exists, and not just in peoples' minds.

I don't think it's right to tell someone that they are CHOOSING to perceive something incorrectly. We are responsible for our own words, and if someone interprets them differently than we intend, then we can always attempt to clarify.

And I think that this issue IS related to the topic at hand, MommaGoose, because we are trying to work out some communication issues on both sides in thoughts expressed on this thread on the subject of Dr. Fine's work.

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"It does seem to me that many of the diagnosed celiacs here agree with the doctors that it's not celiac/it's not vital to be gluten-free until your villi are obviously damaged."

That's certainly not my opinion and I was diagnosed by blood and biopsy. And I don't look down on those who aren't diagnosed. Non-diagnosed people who fell gluten is hurting them should try the diet and see what happens.

richard

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I found this abstract (see below) to an article, which has probably been referenced before on this site. It links the finding of type 2 transglutaminase in jejunal tissue with gluten ataxia. Since I have the DQ1 gene (as well as DQ2) and resulting migraines, etc., I find this interesting and actually pretty scary, since the TG2 antibody is also found in the brain tissue of gluten ataxia patients. However, my point on adding this to this thread is that TG2 antibodies ARE found in jejunal tissue, which would seem to back up Dr. Fine's findings and my test results from Enterolab.

If nothing else makes me commit to the gluten-free diet permanently, the thought of this stuff building up in my brain will do it for sure!

I am thankful for this forum and others I have found on the web. Without them, I think I would still be trying to figure out just what was wrong with me or thinking that it was all just the aging process.

Laurie

Neurology. 2006 Feb 14;66(3):373-7. Related Articles, Links

Autoantibody targeting of brain and intestinal transglutaminase in gluten ataxia.

Hadjivassiliou M, Maki M, Sanders DS, Williamson CA, Grunewald RA, Woodroofe NM, Korponay-Szabo IR.

Department of Neurology, Royal Hallamshire Hospital, Sheffield, UK. m.hadjivassiliou@sheffield.ac.uk

OBJECTIVE: To investigate the presence of autoantibody deposition against type 2 tissue transglutaminase (TG2; a reliable marker of the whole spectrum of gluten sensitivity) in the jejunal tissue and brain of patients with gluten ataxia and in control subjects. METHODS: The authors evaluated jejunal biopsy samples from nine patients with gluten ataxia and seven patients with other causes of ataxia for the presence of TG2-related immunoglobulin deposits using double-color immunofluorescence. Autopsy brain tissue from one patient with gluten ataxia and one neurologically intact brain were also studied. RESULTS: IgA deposition on jejunal TG2 was found in the jejunal tissue of all patients with gluten ataxia and in none of the controls. The intestinal IgA deposition pattern was similar to that seen in patients with overt and latent celiac disease and in those with dermatitis herpetiformis. Widespread IgA deposition around vessels was found in the brain of the patient with gluten ataxia but not the control brain. The deposition was most pronounced in the cerebellum, pons, and medulla. CONCLUSIONS: Anti-tissue transglutaminase IgA antibodies are present in the gut and brain of patients with gluten ataxia with or without an enteropathy in a similar fashion to patients with celiac disease, latent celiac disease, and dermatitis herpetiformis but not in ataxia control subjects. This finding strengthens the contention that gluten ataxia is immune mediated and belongs to the same spectrum of gluten sensitivity as celiac disease and dermatitis herpetiformis.

Thanks for posting this I don't think I have seen it posted before. I have to wonder if those deposits are responsible for the UBOs that are found in MRI on gluten ataxia folks. I had ataxia and DH for over 20 years before the gut stuff showed up. The neuro who ordered my MRI was clueless that the bright objects were celiac related and thought perhaps MS and it would be over 5 more painful years before I was finally diagnosed.

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Sorry, I don't buy Dr. Phil.

My exact words WERE that "there is a perception of bias," and I did explain the context that would cause people to perceive bias. Sorry if I wasn't more clear, but I was attempting to explain that, although Peter is obviously not intending to be judgmental, his words could easily be seen as just that.

There have also been numerous posts on this board saying that people who "only" have gluten intolerance have less damage, have fewer problems, can afford to cheat, and other mis-perceptions that feed the idea that there such a bias exists, and not just in peoples' minds.

I don't think it's right to tell someone that they are CHOOSING to perceive something incorrectly. We are responsible for our own words, and if someone interprets them differently than we intend, then we can always attempt to clarify.

And I think that this issue IS related to the topic at hand, MommaGoose, because we are trying to work out some communication issues on both sides in thoughts expressed on this thread on the subject of Dr. Fine's work.

OK, nicely said. Now I see your point. I vaguely recall some of the posts you mention, but I also seem to recall that I dismissed them (to myself) because the whole concept of one person being "sicker" than another because some doctor gave them a label is ridiculous to me. Rather than point out that the statements were judgmental, I decided (judged) the person posting them to be not worth my time. I'll try to be a little less self-centered, but my attitude does keep me from posting sarcastic responses, which aren't in the best interests of anyone.

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You have to wonder why no Dr. Fine defenders have responded to Momma Goose's post that links to an article that shows the stool test does not work.

You have to wonder how many posts on this forum are by Dr. Fine himself or one of his two cohorts.

You have to wonder how someone could possibly claim that those who critique Enterolab aren't routinely villified and attacked here. Happens every time I see some brave soul dare mention that Dr. Fine fails to submit his test to medical scrutiny.

You have to wonder how long it will be before some moderator decides this topic needs to be removed. Was anyone else here reading the 'I hate the food industry' vent when it suddenly disappeared?

You have to wonder how many posters here are gluten intolerant/self-diagnosed versus diagnosed celiac disease. (And no I'm not attacking anyone.)

Face it celiac disease sufferers - you are outnumbered here by the gluten intolerant or self-diagnosed by a factor of at least 10:1. You will never 'win' one of these discussions and you will be outnumbered and shouted down every time.

Hurrah for those of you willing to question Dr. Fine and supporting it with sound reasoning. Your reward will not come from acknowledgment here but in knowing that you are fighting the good fight and only mean well. As they say, you can lead a horse to water but you can't make it drink. I can only suggest that if you already know that going gluten-free helps there are far better things to do with your $400 than get 'verification.'

Please don't rail at me for 'judging' anyone - I am merely offering moral support to those who find reason to question Dr. Fine or who are otherwise regularly outnumbered, unfairly attacked, and are frustrated. Stiff upper lip, folks - the truth will out!

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You have to wonder how many posters here are gluten intolerant/self-diagnosed versus diagnosed celiac disease.

Who cares? We still all have to eat the same thing.

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You have to wonder how long it will be before some moderator decides this topic needs to be removed. Was anyone else here reading the 'I hate the food industry' vent when it suddenly disappeared?

Just a clarification--any moderator may remove a topic from view but the only person who can delete (or choose to reinstate) a topic or post is the administrator and owner of this site--on which, we are all guests.

Who cares? We still all have to eat the same thing.

This is the bottom line, after all :)

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I am fairly new to this forum. I have been reading for quite some time, but have not posted, except for a response to folks in PA. At any rate, I suspected that I had problems with gluten for some time (mostly severe migraines, joint aches, etc). I did not have the intestinal maladies that many people suffer. I toyed with the gluten free diet for about a year, but cheated from time to time, since I did not have a specific diagnosis. Finally, I came across the references to Enterolab. I got the test, sent it off, and waited, half expecting to get it back telling me I had no problem with gluten at all.

I got the results and found out that I have the DQ2 and DQ1 genes and that I have positive results to the gluten, casein, malabsorption, and transglutaminase tests. DQ1 explained a lot - it is connected with the neuro side of gluten intolerance, thus the migraines, brain fog, odd restless leg symptoms, etc. I stopped eating gluten completely then, no cheating, and EVERY SYMPTOM WENT AWAY. It was amazing - no migraines for over a year now. I have had a couple of very mild headachey migraines, that were easily controlled with Tylenol, and coincided with hormonal cycles, but nothing like the horrible kind that used to make me want to die.

I have a B.S. in Biology, teach anatomy and physiology and biology, have two Masters - one of which concentrated on Immunology, Microbiology, and Evolution. I researched Dr. Fine thoroughly. He is out of Baylor Medical, for Pete's sake, a well-respected medical institution. To publish results, one has to jump through all sorts of hoops. To be published, your work must be peer-reviewed and you must have a source of funding, usually a grant, that enables you to set up a controlled study. In my opinion, Dr. Fine found the connection between his stool and gene tests and gluten intolerance and decided to continue with his work helping people that way, instead of wasting time on returning to a formal study. I find it interesting that the same people who clamor for published research from Dr. Fine, claim to have Candida infections, heavy metal poisonings, and all sorts of other maladies and recommend rememdies that are loosely based on science at best.

I am also amazed that so many people on the forum seem to regard gluten intolerance as a disease. First of all, genetic-based disorders are just that - disorders, not diseases (caused by bacteria, viruses, prions, viroids, etc). In the case of gluten-intolerance, basically you do not have even have a genetic disorder. Instead you (and your ancestors) have genes that have NOT mutated. Your ancestors did not go through the evolutionary process of responding to the pressure of having a toxic substance introduced to the population they lived in. Therefore, your genes are the original genes of the earliest ancestors as far as response to gluten is concerned. You do not have a disease - you are responding normally to a toxin in your food. Some of you unfortunately have the genetic makeup to respond severely - thus, celiac "disease." Others, like me, respond less so, though, in my opinion, severe migraines are no joke.

I guess that will get me booted off the list or flamed, but whatever. There is an incredible amount of non-science spouted on this forum, yet for some reason, Dr. Fine, whose tests are valid and science-based, gets ridiculed. If it wasn't for Dr. Fine's work, I would probably still be toying with the gluten-free diet and second-guessing whether this was all in my head or not. Time after time, people report negative blood tests, yet they have obvious response to the gluten-free diet, so why are these tests called the "gold-standard"? They sound pretty shoddy to me. As for the endoscopy, do you really want to wait until you have villi damage to start the gluten-free diet? I wish there was a forum for people who have gluten intolerance without the celiac genetics, because I feel as if there is a definite prejudice against those who do not have celiac here. Is there one?

I am sorry - that is not a very nice introduction to myself, but I think it needed to be said.

LBD

LBD,

So how exactly do you explain people like me, who don't have DQ2 or DQ8, but have Celiac Disease? Do I not have a disease? If my genes haven't "mutated", why do I have Celiac Disease? According to research, 1-2% of diagnosed Celiacs do not have DQ2 or DQ8. With your reasoning, it shouldn't be possible for their bodies to generate an autoimmune reaction to gluten, but it happens. These people, like myself, do not merely have a disorder...it's definitely a disease. So what I'm saying is that genetics are not cut and dry when it comes to Celiac Disease. There is "no one size fits all" explanation. Celiac Disease is only in the beginning stages of being fully understood.

-Brian

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For Patti and jestgar:

"Who cares? We still all have to eat the same thing."

This strikes me as shortsighted, simple-minded, flip, and potentially dangerous as advice. Must I remind that the actions one takes when diagnosed with celiac are NOT the same as the actions one might take when self-diagnosing (or 'diagnosing' via Enterolab) as gluten intolerant?

The diet is the same, the treatment might be different. When you are diagnosed with celiac disease you shouldn't simply go gluten free and voila! When your doctor sees that you have celiac he tests for a bunch of other things. When you test 'positive' through Enterolab you might not do a darn thing other than go on the diet. I can't count the number of posters here who have tested positive through Enterolab and have simply gone gluten free. They haven't said they've tested for celiac via blood panel, they haven't said they've checked their bone density, they haven't said they've gotten a CBC, they haven't said they've inquired about endoscopy/colonoscopy to look for intestinal damage, they haven't said they've told their doc they might be susceptible to other auto-immune disorders.

Maybe that's why we're concerned about being outnumbered and shouted down. Perhaps it is because we know that you've got to get checked out for a bunch of things buy a doctor if you have celiac disease and we see quite a few folks on this forum suggesting a diet and not much else.

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For heaven's sake--the diet is the same. As far as further testing and all with Celiac Disease, I don't understand your problem. Over and over here on this forum, I and many others have warned of the complications of Celiac. I am currently dealing with an additional condition that my doctor told me is associated with Celiac Disease. Plus, we are well aware that even if someone was not diagnosed via biopsy, that does not mean that that person does not have Celiac--they may or may not.

Flip? I think not--I'm a diagnosed Celiac as of 3 years ago but ill for a least 20 years prior. As I said earlier, I'm frankly shocked that people feel slighted in this way here. If anything I ever said or implied caused a single person to feel like they could not come here for support, then I truly apologize.

Sharing our feelings here is most welcome--fanning the flames of the same argument over and over is not.

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For Patti and jestgar:

"Who cares? We still all have to eat the same thing."

This strikes me as shortsighted, simple-minded, flip, and potentially dangerous as advice. Must I remind that the actions one takes when diagnosed with celiac are NOT the same as the actions one might take when self-diagnosing (or 'diagnosing' via Enterolab) as gluten intolerant?

When you are diagnosed with celiac disease you shouldn't simply go gluten free and voila! When your doctor sees that you have celiac he tests for a bunch of other things.

There is no reason to test for things that are not suggestive of a problem. It's unnecessary time and expense and overuse of the medical system. If you have reason to believe you have a medical issue, you should go to your doctor, regardless of the underlying conditions.

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For Patti and jestgar:

This strikes me as shortsighted, simple-minded, flip, and potentially dangerous as advice. Must I remind that the actions one takes when diagnosed with celiac are NOT the same as the actions one might take when self-diagnosing (or 'diagnosing' via Enterolab) as gluten intolerant?

Maybe that's why we're concerned about being outnumbered and shouted down. Perhaps it is because we know that you've got to get checked out for a bunch of things buy a doctor if you have celiac disease and we see quite a few folks on this forum suggesting a diet and not much else.

Dear sbj-

Frankly, I don't think you've been on this board long enough with 40+ posts to really have a handle on on the statements you posted. I would hope that your not baseing these opinions on just this thread alone.

When you are diagnosed with celiac disease you shouldn't simply go gluten free and voila! When your doctor sees that you have celiac he tests for a bunch of other things. When you test 'positive' through Enterolab you might not do a darn thing other than go on the diet. I can't count the number of posters here who have tested positive through Enterolab and have simply gone gluten free. They haven't said they've tested for celiac via blood panel, they haven't said they've checked their bone density, they haven't said they've gotten a CBC, they haven't said they've inquired about endoscopy/colonoscopy to look for intestinal damage, they haven't said they've told their doc they might be susceptible to other auto-immune disorders.

I went to write you a nice note earlier this afternoon. I then thought better of it as I couldn't seem to find a PC way to write what I wanted to express.

I want to see this thread continue and was reluctant to do this post but am writing this note to you instead of hitting the report button. We want to be here to help ALL the folks who are struggling with this complicated medical issue.

Many of us have struggled for years pre dx--whatever it is--Still 3 years later I'm still struggleing and so many folks have helped me just as they are here to help you. I will try to help you also.

I just hate to see what I perceive as 'fire fanning'. If I am incorrect in my perception and understanding your post.......I do apologize. If you just wander around the board I think you'll find so many folks anxious to help you.

Judy

For heaven's sake--the diet is the same. As far as further testing and all with Celiac Disease, I don't understand your problem. Over and over here on this forum, I and many others have warned of the complications of Celiac. Plus, we are well aware that even if someone was not diagnosed via biopsy, that does not mean that that person does not have Celiac--they may or may not.

Flip? I think not--I'm a diagnosed Celiac as of 3 years ago but ill for a least 20 years prior. As I said earlier, I'm frankly shocked that people feel slighted in this way here. If anything I ever said or implied caused a single person to feel like they could not come here for support, then I truly apologize.

Sharing our feelings here is most welcome--fanning the flames of the same argument over and over is not.

Thanks for your input Patti. I guess I wasn't the only one seeing it this way.

sbj, please stick around and help us with positive solutions here.

Judy

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I really don't know what to think about Dr Fine not publishing his work.

I have an ELISA IgG/IgE test done in Feb 2006 due to my youngest breaking out in ezcema. I went very gluten light based on those results. Found the board in May of that year and opted to be tested through Enterolab due to reading that blood tests wouldn't be reliable after being gluten light for over a month. My family was just over the lower limit Enterolab has set......BUT we all have celiac genes and multiple food intolerances. I am assuming with the celiac genes combined with an IgG food intolerance that we actually were in the beginnings of celiac.

I do like the ability to be able to get the gene test. For those who don't have the known celiac genes the gluten intolerance may or may not be permanent depending on the causes that are behind it. Some have found that they didn't need to remain gluten free after the things that brought on the intolerance were dealt with. Irregardless, the gluten free diet is highly recommended. I have to admit, sometimes I hate the inconveinience of being able to grab anything and cost of gluten free grains, but I'll remain on the diet and teach my children the same due to having the celiac gene.

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I really don't know what to think about Dr Fine not publishing his work.

Did removing the foods suggested by EnteroLab make your family healthier? If yes, then for you the test is valid, if no, then for you the test is no more accurate than allergy testing (which is very inaccurate).

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There is no reason to test for things that are not suggestive of a problem. It's unnecessary time and expense and overuse of the medical system. If you have reason to believe you have a medical issue, you should go to your doctor, regardless of the underlying conditions.

All women of childbearing age should be aware of their vitamin and mineral levels. Folic acid in particular.

My son has a posterior fossa sub arachnoid cyst. He had 3 neurosugeries in 2001. It was drained then shunted and then he needed a shunt revision. Did my poor health cause this? I don't know. But I do know when I was diagnosed, I had a megaloblastic anemia with extermely low folic acid.

In fact for several years I took 50,000ius of aquasol A, 50,000ius of drisdol, a b vitamin supplement, folic acid and from time to time I needed shots of b12. Last I knew, my D level was 15. Dr said that was low, but I don't know the signifigance of the number. My original dr retired and I've had a difficult time finding a new one who knows what to do for a celiac.

Peace,

neesee

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Aren't we ALL here for the same purpose- to get healthy or help someone we love get healthy? If the gluten-free diet helps, it helps. Gluten-intolerant or celiac.

As far as Dr Fine publishing his work- how many of us have doctors who have published? My GI, who is at one of the top hospitals in Boston and on the faculty at Harvard Med has published ONE article. One! And it's not even on celiac. Publishing at the level Dr Fine would have to publish is pretty involved- perhaps he's testing instead of publishing.

If he has helped you achieve a healthier diet and better health, great! If not, carry on until you find it! (BTW- I have NOT used Enterolab)

I just want people to be constructive- you can disagree with or CRITIQUE a poster, a doctor, a diet, a diagnosis. Your critique does not make you more correct than anyone else.

On to HEALTH!!!!!!!!!!

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When your doctor sees that you have celiac he tests for a bunch of other things.

If you read a bit more on this board you will find that, more often than not, this is not true. Many, many people get no help at all. Some folks with first degree relatives are refused testing. It happens. Enterolab offers an alternative. I had to FIRMLY INSIST my own kids be tested after my diagnosis. When the blood work can back negative, as it often does in kids, he refused further testing even though they all had symptoms. So where did I turn? You guessed it. Now all the things the were supposed to "outgrow" are gone.

Why doesn't he publish? I think it is fair to ask him. But at the same time I wouldn't put much stock in it. The only real test is on the general population. And he has done that already. You know, you can find published work about the effectiveness of IV alcohol for diabetics from the early 1900's. It was even an accepted treatment at one time.

And I love you all--gluten intolerant, celiac or whatever! :P

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I can't count the number of posters here who have tested positive through Enterolab and have simply gone gluten free. They haven't said they've tested for celiac via blood panel, they haven't said they've checked their bone density, they haven't said they've gotten a CBC, they haven't said they've inquired about endoscopy/colonoscopy to look for intestinal damage, they haven't said they've told their doc they might be susceptible to other auto-immune disorders.

How boring this forum would be if everyone had to qualify their advice by listing every test and diagnosis they've ever had (or haven't had)! :lol:

I totally agree... whether you have an official diagnosis of celiac or not... that you should seek medical advice if you think there's something wrong with your health. I've had some BAD experiences with doctors, but I keep going back because I know my knowledge is limited... and I certainly can't order all of my own medications and tests (even if I knew exactly what to order). Right now I'm learning about what happens when you have vitamin and mineral deficiencies and I'm amazed at the range and severity of symptoms they can cause! Malnutrition... whether caused by celiac disease or gluten intolerance or leaky gut, etc... is nothing to fool around with.

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All women of childbearing age should be aware of their vitamin and mineral levels.

I would amend this to say "all women who are, or may become pregnant". And still, it would be true whether or not you know you have Celiac or gluten intolerance or if you smoke or whatever.

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