Ok after having read most of Dr. Green book "Celiac Disease - A Hidden Epidemic". Which is a pretty darn good book. Has a few areas I disagree with, but then I'm sure he knows a whole heck of a lot more than I. Anyone else read this book?
One point that was emphasised quite a bit in the book is the need for testing for Celiac before going gluten free. I wish I'd known more as I would have made sure that all the testing that could possibly be done with for celiac disease was done. Right now I look back at my records and see one lowly test that could have easily been a false negative. :(
Had I known I would have pushed for Complete testing for Celiac. I think there are 4 standard ones now, plus I'd also check for IgA defficency.
If I want to do the test now that means at least 1 month of 4 slices of bread a day up to 3 months, which still could be inconclusive. I swear just a crumb sets me off already, I can't imagine 4 slices of bread.
So before going gluten free make sure that ALL the needed tests are done. There is high association of MC with CD. Plus given that I have tested positive for gluten sensitivity and have the gene for Celiac as well.
There are other considerations besides having the diagnosis of CD that I never knew about. While I could work on those issues on my own, my guess is that without a Dr who thinks the same as me that this will be an uphill battle with regards to testing/insurance/etc.
Perhaps I'm taking this book too much to heart. Feedback would be appreciated.
Thanks,
Mike
Test for Celiac Before Going Gluten Free
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kate_ce1995
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- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
If you had celiac disease, would you eat differently than you do now?
If you don't, would you eat things that make you feel bad?
I'm guessing the answer is no to both questions. So does it matter one way or the other?
That is how I look at it. Of course despite the way I feel on gluten, I have not successfully come off it. I keep trying and failing. Its horrible.
Katy
If you don't, would you eat things that make you feel bad?
I'm guessing the answer is no to both questions. So does it matter one way or the other?
That is how I look at it. Of course despite the way I feel on gluten, I have not successfully come off it. I keep trying and failing. Its horrible.
Katy
Hi Katy,
No and no and...
But for the third question yes it does matter. I highly recommend reading the book I mentioned to get the details. But there's quite a bit more to Celiac than just eating GF. Further testing, follow up testing, other related diseases (malabsorption, cancer, other autoammune just to name a few), more chance of gluten free advocacy with more registered as having CD, more chance for research, testing for family since it's genetic. There's more but this should clear up my point just a bit.
As far as being GF, I could care less about the diagnosis so I'm going to continue to eat GF, but the rest of it matters quite a bit.
Though I will admit that there can be potential downfalls to being diagnosed as well. Loss of insurance, insurance rates might go up.
Mike
No and no and...
But for the third question yes it does matter. I highly recommend reading the book I mentioned to get the details. But there's quite a bit more to Celiac than just eating GF. Further testing, follow up testing, other related diseases (malabsorption, cancer, other autoammune just to name a few), more chance of gluten free advocacy with more registered as having CD, more chance for research, testing for family since it's genetic. There's more but this should clear up my point just a bit.
As far as being GF, I could care less about the diagnosis so I'm going to continue to eat GF, but the rest of it matters quite a bit.
Though I will admit that there can be potential downfalls to being diagnosed as well. Loss of insurance, insurance rates might go up.
Mike
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
I should have thought about these factors. You are right that increased awareness would be beneficial to all of us. In some ways I think I've seen an improvement in gf products in mainstream stores just in the last 4 years since I started doing this.more chance of gluten free advocacy with more registered as having CD, more chance for research, testing for family since it's genetic
Does the book imply that the risk for other autoimmune things does not dissapate when on the gf diet?
Katy[/quote]
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TendrTummy
- Gentoo Penguin
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- Location: Waconia, MN, USA
- Contact:
Hi u2,
I wanted to highlight something I read in one of Dr. Fine's articles/speeches. He'd stated that a test for Celiac would ONLY be positive if there was damage to the villi in the small intestine/duodenum. (while the point of his article is to say that this is NOT the only true indicator of GS or Celiac, the point here is that the tests currently available only test for this damage) This means that you'd have to ingest gluten to the point where it would damage your villi to have a positive. (which means you're not absorbing correctly) Do you really want your villi to be damaged just for the sake of research? I agree that it'd be nice to have a heightened awareness and less people calling me crazy all the time, but I personally went thru a LOT from the time I first starting showing symptoms until now. I'm not willing to go rehash that battle. I no longer have the strength in me.
BTW I had the celiac test twice when I was still ingesting gluten, and both tests were negative; yet my test from Dr. Fine showed a strong positive. I just don't think they're testing the same things. Perhaps once Dr. Fine is published and more widely known/respected we'll get a little more recognition.
As for me, it's GF forever!!!! 2 bites of the stuff and I'm sick for a total of 3 months. Sooo not worth it.
**EDIT**
The article I was referring to from Dr. Fine is called Early Diagnosis of Gluten Sensitivity: Before the Villi Are Gone, at the following link: http://www.finerhealth.com/Essay/
I wanted to highlight something I read in one of Dr. Fine's articles/speeches. He'd stated that a test for Celiac would ONLY be positive if there was damage to the villi in the small intestine/duodenum. (while the point of his article is to say that this is NOT the only true indicator of GS or Celiac, the point here is that the tests currently available only test for this damage) This means that you'd have to ingest gluten to the point where it would damage your villi to have a positive. (which means you're not absorbing correctly) Do you really want your villi to be damaged just for the sake of research? I agree that it'd be nice to have a heightened awareness and less people calling me crazy all the time, but I personally went thru a LOT from the time I first starting showing symptoms until now. I'm not willing to go rehash that battle. I no longer have the strength in me.
BTW I had the celiac test twice when I was still ingesting gluten, and both tests were negative; yet my test from Dr. Fine showed a strong positive. I just don't think they're testing the same things. Perhaps once Dr. Fine is published and more widely known/respected we'll get a little more recognition.
As for me, it's GF forever!!!! 2 bites of the stuff and I'm sick for a total of 3 months. Sooo not worth it.
**EDIT**
The article I was referring to from Dr. Fine is called Early Diagnosis of Gluten Sensitivity: Before the Villi Are Gone, at the following link: http://www.finerhealth.com/Essay/
ChristineWhen this immunologic reaction damages the finger-like surface projections, the villi, in the small intestine (a process called villous atrophy), it is called celiac disease (or sometimes celiac sprue or gluten-sensitive enteropathy).
Indeed, there is quite a bit of research showing much improvement after going GF. But without testing we don't know if there was damage done or not to the villi. Other precautions need to be taken in either case.kate_ce1995 wrote:I should have thought about these factors. You are right that increased awareness would be beneficial to all of us. In some ways I think I've seen an improvement in gf products in mainstream stores just in the last 4 years since I started doing this.more chance of gluten free advocacy with more registered as having CD, more chance for research, testing for family since it's genetic
Does the book imply that the risk for other autoimmune things does not dissapate when on the gf diet?
Katy
Let's say that there is damage done to your villi, you don't get tested for biopsy because your blood tests are negative, so they don't test for other things like say malabsorption of some vitamin, I'll use calcium being a great example here. So you go GF, and feel great, but in the meantime more and more damage is being done to your bones because of lack of absorption of calcium. Your body taps the bones for calcium to do some important bodily functions since none is coming in from diet.
Since we weren't diagnosed as having Celiac we might not get tested for calcium or some other vitamin malabsorption or perhaps it wouldn't be paid for by insurance, or even it being difficult to get your Dr to test for it without the diagnosis.
You are indeed correct. I'm probably not being clear enough. I'm talking about folks thinking about starting to go GF. I think that they need to make sure that the testing done is complete and acurate as possible before going GF. Since going GF can hide/mask other damage done (see the bit about calcium in the previous post).TendrTummy wrote:Hi u2,
I wanted to highlight something I read in one of Dr. Fine's articles/speeches. He'd stated that a test for Celiac would ONLY be positive if there was damage to the villi in the small intestine/duodenum. (while the point of his article is to say that this is NOT the only true indicator of GS or Celiac, the point here is that the tests currently available only test for this damage) This means that you'd have to ingest gluten to the point where it would damage your villi to have a positive. (which means you're not absorbing correctly) Do you really want your villi to be damaged just for the sake of research? I agree that it'd be nice to have a heightened awareness and less people calling me crazy all the time, but I personally went thru a LOT from the time I first starting showing symptoms until now. I'm not willing to go rehash that battle. I no longer have the strength in me.
BTW I had the celiac test twice when I was still ingesting gluten, and both tests were negative; yet my test from Dr. Fine showed a strong positive. I just don't think they're testing the same things. Perhaps once Dr. Fine is published and more widely known/respected we'll get a little more recognition.
As for me, it's GF forever!!!! 2 bites of the stuff and I'm sick for a total of 3 months. Sooo not worth it.
**EDIT**
The article I was referring to from Dr. Fine is called Early Diagnosis of Gluten Sensitivity: Before the Villi Are Gone, at the following link: http://www.finerhealth.com/Essay/
ChristineWhen this immunologic reaction damages the finger-like surface projections, the villi, in the small intestine (a process called villous atrophy), it is called celiac disease (or sometimes celiac sprue or gluten-sensitive enteropathy).
I don't think I could ever go back, and even if I did now there's no telling if the damage done will even show or how long it would take, meanwhile I'm suffering in other areas and potentially doing irreversable damage to my colon. They randomly select the villi, so there is the chance of missing it. There's no false positive (well with regards to damage done, there is potential for false positive with regards to diagnosing celiac), but there is very much a potential for a false negative. But until they get better testing, right or wrong, this is the standard for diagnosis of Celiac.
What I might do is make sure that all blood tests were done that can be done, including IgA deficiency. If they came back negative and I'm still convinced it's gluten, then perhaps the gene test and/or stool test. Try to convice Dr to do a biopsy. In the end if we're negatives still, then I say go GF and don't look back. Perhaps the testing will improve, testing is heading in the right direction at least.
Also keep an eye out for family memebers showing symptoms and have them be sure to get tested as well.
Thanks,
Mike
Mike
Sounds like Dr. Greens book is very interesting and started you on a new path of questioning , all over again, of everything you have done. Nothing wrong with that. It is always a matter of if you are being asked the right questions by an author, for what purpose , analyzing the question, the answer and in so many cases asking what test need to be done and then having upper and lower limits to judge the tests. What I call questioning the answers. Their are so many books on the market questioning and judging and questioning everything. Lets take a look at what they question and what they actually answer in hopes that you ( us, we) might benefit from his advice without it inflaming everyone's imagination. At the same time learning how to ask questions that might lead to answers
Clearly Dr. Green advocates being thoroughly tested before going gluten free. What tests does he recommend? What are the upper and lower limits of those tests? What are the best labs to have this done by? Most medical doctors have no conception of malabsorbtion. What standard medical tests will provide us with the right information on malabsorbtion ? Naturopaths test for malabsorbtion but IMHO come up with calcium and heavy metals. My parents and several friends spent tons of money on treatments like this with no discernible results over years of treatment. Does a negative small bowel biopsy mean that you are not gluten sensitive. When someone does not eat gluten and they feel much better what does this mean? Does this meet Dr. Greens criteria for testing before going gluten Free? If not what does? How do we ask for the right tests if we have found we feel so much better without gluten?
Does he explain what the massive damage is that is being done if someone has not been tested before going gluten free. Certainly if massive damage is being done their must be tests for that before during and after. Does he explain what those test are and how to have them done? How do you interpret the results, before, during and long after? What do you do if the tests do not improve? what do you do if your doctor or insurance company will not provide those tests?
Gene testing can be done at any time and is relatively inexpensive A GF diet will not change the results . What does he recommend if the the gene testing is positive even if their is no sign of digestive problems in family members?
Do we need to live in purgatory for the standard twelve years it takes before gluten sensitivity or celiac disease show up on a blood test or biopsy? All the while that more damage is occurring in the small bowel. Better to be GF than to wait until so much damage occurs that it shows up on a test
I can not second guess what has worked for me or you . I read a book like this and can only absorb it into everything else I know and then...... Ask my own answers.
And hope for practical answers rather than a bunch of mumbo Jumbo from the doctors.
Hope I have given you some food for thoughts toward your continued recovery.
Love
Matthew
Sounds like Dr. Greens book is very interesting and started you on a new path of questioning , all over again, of everything you have done. Nothing wrong with that. It is always a matter of if you are being asked the right questions by an author, for what purpose , analyzing the question, the answer and in so many cases asking what test need to be done and then having upper and lower limits to judge the tests. What I call questioning the answers. Their are so many books on the market questioning and judging and questioning everything. Lets take a look at what they question and what they actually answer in hopes that you ( us, we) might benefit from his advice without it inflaming everyone's imagination. At the same time learning how to ask questions that might lead to answers
Clearly Dr. Green advocates being thoroughly tested before going gluten free. What tests does he recommend? What are the upper and lower limits of those tests? What are the best labs to have this done by? Most medical doctors have no conception of malabsorbtion. What standard medical tests will provide us with the right information on malabsorbtion ? Naturopaths test for malabsorbtion but IMHO come up with calcium and heavy metals. My parents and several friends spent tons of money on treatments like this with no discernible results over years of treatment. Does a negative small bowel biopsy mean that you are not gluten sensitive. When someone does not eat gluten and they feel much better what does this mean? Does this meet Dr. Greens criteria for testing before going gluten Free? If not what does? How do we ask for the right tests if we have found we feel so much better without gluten?
Does he explain what the massive damage is that is being done if someone has not been tested before going gluten free. Certainly if massive damage is being done their must be tests for that before during and after. Does he explain what those test are and how to have them done? How do you interpret the results, before, during and long after? What do you do if the tests do not improve? what do you do if your doctor or insurance company will not provide those tests?
Gene testing can be done at any time and is relatively inexpensive A GF diet will not change the results . What does he recommend if the the gene testing is positive even if their is no sign of digestive problems in family members?
Do we need to live in purgatory for the standard twelve years it takes before gluten sensitivity or celiac disease show up on a blood test or biopsy? All the while that more damage is occurring in the small bowel. Better to be GF than to wait until so much damage occurs that it shows up on a test
I can not second guess what has worked for me or you . I read a book like this and can only absorb it into everything else I know and then...... Ask my own answers.
And hope for practical answers rather than a bunch of mumbo Jumbo from the doctors.
Hope I have given you some food for thoughts toward your continued recovery.
Love
Matthew
Ah yes, very good Matthew, great questions indeed. And certainly more food for thought. Thank you very much, I very much needed your perspective.
Perhaps I'm on the path of trying to seek perfection, but is perfection even attainable? Is my seeking the extra 1 or 2 or 10% worth the time and effor when I should be living my life with the 99, 98 or 90% health. I know that part of my anxiety is my search for this perfection and without this perfection I understand why one would love me, let alone love myself.
Where is the balance, when does seaking of understanding or of health go from a healthy drive to an unhealth obsesion where I cannot live in the now.
Again thanks for the perspective. :)
Thanks,
Mike
Perhaps I'm on the path of trying to seek perfection, but is perfection even attainable? Is my seeking the extra 1 or 2 or 10% worth the time and effor when I should be living my life with the 99, 98 or 90% health. I know that part of my anxiety is my search for this perfection and without this perfection I understand why one would love me, let alone love myself.
Where is the balance, when does seaking of understanding or of health go from a healthy drive to an unhealth obsesion where I cannot live in the now.
Again thanks for the perspective. :)
Thanks,
Mike
Hi Mike,
My sister has the book, and as soon as she's finished with it, I plan on reading it. From what she's told me, most of it is good, but we just have these little "issues" with it based on our own experience.
Her sister-in-law found the related symptoms very eye-opening as think they've got similar things going in on the other side of their family.
OK, here's the deal, and I've seen Dr. Fine's results that he presented in Dallas, that are to be printed up in his paper SOMEDAY! Ha!
(Also, remember that he's published in New England Journal of Medicine a number of times, plus a number of other major GI journals, and was on staff at one of the leading Gastro hospitals a long time, so no slouch! Also he's an expert in celiac disease, not just M.C., and also, he's got this stuff himself -- multiple foods he has to not eat.)
The reason that Enterolab's stool testing is better than blood testing, even the newer, more accurate ones is that that's where the antibodies are actually found, thus, they are plentiful enough to be picked up earlier than when they're in the blood stream in big enough amounts. OK, this part, you probably already knew, right?
Dr. Green and all the other big names in this field will all readily admit that a percentage of persons with biopsy proven celiac (detectible villi damage by pathology), will have false negative results on even the most accurate blood tests (from research when both were done on each person).
By comparison, when Dr. Fine cross checked each of his research patients, every single one of his biopsy proven patients for study purposes came up with positive stool antibodies. From where I come from, that's 100 percent accuracy.
The big benefit of stool testing, in my opinion, is that the sooner one finds out one is gluten sensitive, the sooner s/he can get off of it, and, from what we keep reading, that's supposed to prevent even more autoimmune diseases from popping up later.
In my case, it was already too late, because osteoporosis was already there. I just picked this up with routine screening. Most insurance companies will cover a certain percentage of preventive care, so you might want to request a bone density.
If, in fact, your bones have suffered from malabsorbing calcium, then that will generate a number of other tests of which you spoke.
If you've been having routine blood work, then you could easily know whether or not you're anemic. All you need is a complaint of fatigue, and often the docs will check that, but I should think that if you reported a definite improvement in your gut symptoms and other symptoms, that your doc should put two and two together, and be willing to do any nutrient-related tests related to malabsorption.
I simply told my internist about it, plus my diagnosis of M.C., and perhaps he also noticed some neuro problems related to B-12 deficiency, so checked that, and got it back up to where it should be, etc. Then, he ordered the calcium/vit D related tests to see what was happening after he'd put me on Calcitrate Plus/Vit D.
In terms of celiac related cancer, I suppose that if that is really worrying you, you could have the doc take a look down there with his naked eye through endoscopy without the need for biopsying unless you think you might still have significant damage without ingesting all that gluten again.
I'm pretty sure he'd go ahead and do the biopsies for completeness, particularly since you report a history of doing better off gluten.
Guess you could find a good endochrine doc who specializes in metabolic and bone diseases like mine as they seem to "get it" when you explain things to them.
Before doing that, though, ask for a routine bone density test. That should relieve your mind about your bones, and also, will give you a baseline for later comparison through the years.
Wasn't it you who had a B-12/folate level already or was that someone else?
In terms of insurance, they don't pay for the treatment anyway, which is the right foods, at last not yet, anyway.
I will have to read the book myself before making any statements about it, but from what I hear, it's a good book in that it will increase one's index of awareness that gluten sensitivity can even be a problem.
I also hear that it's got LOTS of gut physiology in it, which will be good for those interested in that.
Also, there was talk awhile back on celiac.com about a stool test which WASN'T as accurate as blood testing that was done in Germany -- a very tiny little study at that.
The difference in that test and Enterolab's is that the Germans simply took the same procedure that is used to identify the antibodies in blood and applied it in the same way to stool, unchanged.
Dr. Fine, in developing his test for antibodies, had tried this, and found it not to work, so he continued working with it until he got the dilutions correct, and probably the end points established as he observed lots and lots of patients -- until he got it right, in other words.
I'm not sure what the difference is between Enterolab's stool test and the Italian stool test in terms of methodology (think it's in one of the rooms on this site, someplace, if you'd care to check it out), but their research has validated a similar method as being very accurate, AND it's published already! Did Dr. Green's book happen to mention that study?
Do you suspect that anything else is wrong with you because of any observed symptoms? If so, those should give you the diagnoses to get the tests for other autoimmune diseases. I know that before I removed gluten, I had a big ole goiter pop up on my neck, and the dog-on gluten had already killed my thyroid by then.
A precautionary word concerning thyroid antibodies would be that even if they come up negative should you start to have symptoms, that doesn't mean that your thyroid condition isn't autoimmune.
There are a number of things symptoms that you could report that would justify, for insurance, having a thyroid panel.
Ask your doc if he would do a neuro exam, like check your reflexes, etc., if you like. I think that neuro damage can occur from the malabsorption of vitamins like B-12, for instance. GF diets don't provide us with all the fortifications with vitamins, especially folate, that are required by law to be put in glutenous grains, so we really need to take B-12 and folate together so one won't mask the other. It would be a good idea to pop in a good allergen free multi-vit once in a while as well, making sure it's got a little B-6 in it as well as other B-vits and Vit C.
Calcitrate Plus has essential minerals for bone health as well. It has Vit D, but I add a little more (also allergen free) to the meet my doctor's recommendation.
I'm sure that plenty of people are being diagnosed all the time the traditional way that will help the celiac community as awareness is growing leaps and bounds. If you don't believe it, ask someone familiar with how the sales of gluten-free products are doing in the grocery stores and online, not that I'm big into those as I'm not, but I'm glad they help lots of people to stay on their diets.
Hope you are doing well these days.
Good luck with your quest to complete good health!
Oh, and Mike, I forgot to mention one important point -- the panel that's done through Enterolab includes the tTg antibody which shows damage (though it might be submicroscopic damage) to the villi, so since I have one HDL DQ 2 gene to go with my DQ1 (M.C. gene), i think that, other than the lack of a biopsy) I could legitimately call myself a celiac just based on this known damage in addition to having the DQ 2 gene.
That's another thing I like better about Enterolab -- they do the other HDL genes that are related to M.C.
A while back, however, I read on Promethius's lab (the most accurate or maybe tied with Mayo's lab), that they can break down the DQ 2 into a couple of forms, only one of which can (in their opinion) point to celiac disease as they define it.
I've been tempted to send in some blood, just to determine which of the HLA DQ2's I have. Hope I was awake when I read that! Ha!
Yours, Luce
My sister has the book, and as soon as she's finished with it, I plan on reading it. From what she's told me, most of it is good, but we just have these little "issues" with it based on our own experience.
Her sister-in-law found the related symptoms very eye-opening as think they've got similar things going in on the other side of their family.
OK, here's the deal, and I've seen Dr. Fine's results that he presented in Dallas, that are to be printed up in his paper SOMEDAY! Ha!
(Also, remember that he's published in New England Journal of Medicine a number of times, plus a number of other major GI journals, and was on staff at one of the leading Gastro hospitals a long time, so no slouch! Also he's an expert in celiac disease, not just M.C., and also, he's got this stuff himself -- multiple foods he has to not eat.)
The reason that Enterolab's stool testing is better than blood testing, even the newer, more accurate ones is that that's where the antibodies are actually found, thus, they are plentiful enough to be picked up earlier than when they're in the blood stream in big enough amounts. OK, this part, you probably already knew, right?
Dr. Green and all the other big names in this field will all readily admit that a percentage of persons with biopsy proven celiac (detectible villi damage by pathology), will have false negative results on even the most accurate blood tests (from research when both were done on each person).
By comparison, when Dr. Fine cross checked each of his research patients, every single one of his biopsy proven patients for study purposes came up with positive stool antibodies. From where I come from, that's 100 percent accuracy.
The big benefit of stool testing, in my opinion, is that the sooner one finds out one is gluten sensitive, the sooner s/he can get off of it, and, from what we keep reading, that's supposed to prevent even more autoimmune diseases from popping up later.
In my case, it was already too late, because osteoporosis was already there. I just picked this up with routine screening. Most insurance companies will cover a certain percentage of preventive care, so you might want to request a bone density.
If, in fact, your bones have suffered from malabsorbing calcium, then that will generate a number of other tests of which you spoke.
If you've been having routine blood work, then you could easily know whether or not you're anemic. All you need is a complaint of fatigue, and often the docs will check that, but I should think that if you reported a definite improvement in your gut symptoms and other symptoms, that your doc should put two and two together, and be willing to do any nutrient-related tests related to malabsorption.
I simply told my internist about it, plus my diagnosis of M.C., and perhaps he also noticed some neuro problems related to B-12 deficiency, so checked that, and got it back up to where it should be, etc. Then, he ordered the calcium/vit D related tests to see what was happening after he'd put me on Calcitrate Plus/Vit D.
In terms of celiac related cancer, I suppose that if that is really worrying you, you could have the doc take a look down there with his naked eye through endoscopy without the need for biopsying unless you think you might still have significant damage without ingesting all that gluten again.
I'm pretty sure he'd go ahead and do the biopsies for completeness, particularly since you report a history of doing better off gluten.
Guess you could find a good endochrine doc who specializes in metabolic and bone diseases like mine as they seem to "get it" when you explain things to them.
Before doing that, though, ask for a routine bone density test. That should relieve your mind about your bones, and also, will give you a baseline for later comparison through the years.
Wasn't it you who had a B-12/folate level already or was that someone else?
In terms of insurance, they don't pay for the treatment anyway, which is the right foods, at last not yet, anyway.
I will have to read the book myself before making any statements about it, but from what I hear, it's a good book in that it will increase one's index of awareness that gluten sensitivity can even be a problem.
I also hear that it's got LOTS of gut physiology in it, which will be good for those interested in that.
Also, there was talk awhile back on celiac.com about a stool test which WASN'T as accurate as blood testing that was done in Germany -- a very tiny little study at that.
The difference in that test and Enterolab's is that the Germans simply took the same procedure that is used to identify the antibodies in blood and applied it in the same way to stool, unchanged.
Dr. Fine, in developing his test for antibodies, had tried this, and found it not to work, so he continued working with it until he got the dilutions correct, and probably the end points established as he observed lots and lots of patients -- until he got it right, in other words.
I'm not sure what the difference is between Enterolab's stool test and the Italian stool test in terms of methodology (think it's in one of the rooms on this site, someplace, if you'd care to check it out), but their research has validated a similar method as being very accurate, AND it's published already! Did Dr. Green's book happen to mention that study?
Do you suspect that anything else is wrong with you because of any observed symptoms? If so, those should give you the diagnoses to get the tests for other autoimmune diseases. I know that before I removed gluten, I had a big ole goiter pop up on my neck, and the dog-on gluten had already killed my thyroid by then.
A precautionary word concerning thyroid antibodies would be that even if they come up negative should you start to have symptoms, that doesn't mean that your thyroid condition isn't autoimmune.
There are a number of things symptoms that you could report that would justify, for insurance, having a thyroid panel.
Ask your doc if he would do a neuro exam, like check your reflexes, etc., if you like. I think that neuro damage can occur from the malabsorption of vitamins like B-12, for instance. GF diets don't provide us with all the fortifications with vitamins, especially folate, that are required by law to be put in glutenous grains, so we really need to take B-12 and folate together so one won't mask the other. It would be a good idea to pop in a good allergen free multi-vit once in a while as well, making sure it's got a little B-6 in it as well as other B-vits and Vit C.
Calcitrate Plus has essential minerals for bone health as well. It has Vit D, but I add a little more (also allergen free) to the meet my doctor's recommendation.
I'm sure that plenty of people are being diagnosed all the time the traditional way that will help the celiac community as awareness is growing leaps and bounds. If you don't believe it, ask someone familiar with how the sales of gluten-free products are doing in the grocery stores and online, not that I'm big into those as I'm not, but I'm glad they help lots of people to stay on their diets.
Hope you are doing well these days.
Good luck with your quest to complete good health!
Oh, and Mike, I forgot to mention one important point -- the panel that's done through Enterolab includes the tTg antibody which shows damage (though it might be submicroscopic damage) to the villi, so since I have one HDL DQ 2 gene to go with my DQ1 (M.C. gene), i think that, other than the lack of a biopsy) I could legitimately call myself a celiac just based on this known damage in addition to having the DQ 2 gene.
That's another thing I like better about Enterolab -- they do the other HDL genes that are related to M.C.
A while back, however, I read on Promethius's lab (the most accurate or maybe tied with Mayo's lab), that they can break down the DQ 2 into a couple of forms, only one of which can (in their opinion) point to celiac disease as they define it.
I've been tempted to send in some blood, just to determine which of the HLA DQ2's I have. Hope I was awake when I read that! Ha!
Yours, Luce
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TendrTummy
- Gentoo Penguin
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- Location: Waconia, MN, USA
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Hi Mike,mle_ii said:
I don't think I could ever go back, and even if I did now there's no telling if the damage done will even show or how long it would take, meanwhile I'm suffering in other areas and potentially doing irreversable damage to my colon. They randomly select the villi, so there is the chance of missing it. There's no false positive (well with regards to damage done, there is potential for false positive with regards to diagnosing celiac), but there is very much a potential for a false negative. But until they get better testing, right or wrong, this is the standard for diagnosis of Celiac.
Thanks for the clarification.. You know, reading this part of your post, I just don't *get* why they think this is an accurate test AT ALL. First there is the random selection of villi as you mention, but also, what if it's NOT Gluten killing your villi??? Couldn't a reaction to, say, dairy ALSO kill your villi? I'm just not getting the mentality of the medical community these days. That's why I got OUT of it. They no longer care about patients; it's all about the money that lines their pockets with the exception of a few doctors who actually remember that they are supposed to be helping people (like Polly and my chiro). What a crock.
Anyway, that's all I wanted to say..
Christine
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
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- Location: Vermont
Luce,
The frustrating part about being tested for malabsorption issues or any mineral/vitamin issue is that insurances are reluctant to pay.
Heck, without even considering the MC and gluten sensitivity, I am at risk for osteoporosis because of my tender age of hysterectomy. BUT I can not get a baseline test done until 2 years after the START of my risk factor! Can you believe it? I would think a test at the start and then 2 years later to see if there is a change. But then I would have to wait even more time to see if my bone density is dropping even if its okay next year. That won't be to say that it wasn't great last year pre-lupron/hyst. The medical communitiy is really messed up.
I feel nerve issues from time to time like hands going to sleep worse at night and such and usually popping just 1 or 2 days in a row a B Complex vit helps a lot. So I suspect I'm not getting enough all the time.
Okay, I gotta get to work. I'll stop rambling now.
Katy
The frustrating part about being tested for malabsorption issues or any mineral/vitamin issue is that insurances are reluctant to pay.
Heck, without even considering the MC and gluten sensitivity, I am at risk for osteoporosis because of my tender age of hysterectomy. BUT I can not get a baseline test done until 2 years after the START of my risk factor! Can you believe it? I would think a test at the start and then 2 years later to see if there is a change. But then I would have to wait even more time to see if my bone density is dropping even if its okay next year. That won't be to say that it wasn't great last year pre-lupron/hyst. The medical communitiy is really messed up.
I feel nerve issues from time to time like hands going to sleep worse at night and such and usually popping just 1 or 2 days in a row a B Complex vit helps a lot. So I suspect I'm not getting enough all the time.
Okay, I gotta get to work. I'll stop rambling now.
Katy