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I totally agree with you and it is really sad that doctors won't recognize the millions who are GS but not with CD.  What's worse is expecting someone who is suspect but has gone gf and gotten better to get BACK on gluten with a "gluten challenge" JUST to get the damage to show up so they can be diagnosed as celiac -  AND be marked for life when it comes to insurance, asI have just recently been denied insurance twice because of my diagnosis and I am really getting hesitant to encourage people to get it on record.  Unless one is young and in a group insurance plan, you can basically forget getting individual insurance with any plan that does any good. I'm just hoping to live long enough now to get on Medicare (if there's any money left in the Medicare fund by that time.) By the way, I am totally off all gluten, dairy, soy, corn, additives/colorings, preservatives, any processed foods, sugar, caffeine, chocolate, most nuts, and few fruits (because of
 too much natural fructose, and I feel better now at 60 than I ever did at 30.
     I also agree with Dr. Ken Fine's stool testing to see if the antibodies are present - LONG before the damage is done. However, since he hasn't published his findings yet, other doctors don't even give him any credit. You can read about his work at www.enterolab.com   He's a very smart doctor who has helped out 10 members of my immediate family and we are all much healthier for it. (Several also tested negative for blood testing and biopsies with their other doctors and were told to eat all the gluten they wanted.)  However, so many people just won't stick to a gf diet, much less one like my whole family is on. But it took self-determination and realizing how we felt after eating something to narrow it down. I have found that the things you most crave are the things that are many times "toxic" to your body and cause the most damage and problems. That's what makes it so hard to turn it down too, as the cravings don't always disappear completely.
     I've gone on long enough. I hope this helps support what you were thinking.I've known it for a long time but am still outnumbered by those who think otherwise.
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It seems to me that you are right on the money.  Many of us feel that gluten intolerance is ignored and no one is addressing this issue.  Dr. Ferriera in Hagerstown MD (he is a colleague of Dr. Fasano) will tell folks that test negative to go gluten free anyway.  If they get better, then they have their answer.  He doesn't worry about "the gold standard" when it comes to possible gluten intolerance.  Dr. Rodney Ford in New Zealand is majorly on to this problem and has written many articles and done some educational videos on YouTube.com  Dr. Fasano told a group in a meeting I attended that 35% of the population is gluten intolerant and 45% of the population have the gene for celiac.  That alone is huge.  Naturalpaths seem to be more up on gluten being a major source of ills and often tell patients to go gluten free.  
 
So you are very accurate in your assessment.
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I have no idea whether I should believe Enterolab or not... I had been on a GF diet (as strict as our celiac sprue dx daughter, although I do eat out occasionally, as GF as I can) since 2003.  According to their results, anyone with a reading of over 8 had an autoimmune reaction and mine was something like 11.  (I think the numbers can go into triple digits.)  I also had a reaction to dairy (that was 16) which I was eating all the time back then.  I subsequently quit eating dairy.

The person I spoke with said the reaction to gluten was definitely an autoimmune reaction - not borderline or a possible anomaly -- and so they would interpret it as celiac disease even though I didn't have the genes.  However, not everybody believes Enterolab's stool sample results - they have not yet undergone a peer review process which I guess is the medical community's standard of believability.

I definitely would not have showed any autoimmune reaction in a blood test and have no idea how my villi would look.  There might be another  type of autoimmune reaction for nonceliacs that involves the body attacking some other location other than the villi.  I don't know.  

It's all interesting!
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I've wondered about the wheat allergy/wheat intolerance/celiac continuum myself. It seems to me that testing for the most common food allergens should be considered a part of the normal blood work that people go in for with their regular health exams. They test for kidney, liver etc. function. They should also test for lactose intolerance/allergy, wheat allergy, CD...as a part of a routine blood work-up. It could eliminate many troubling health problems early.
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The US doctors were arrogant idiots....While the Europeans were investing better tests and scoping more people because the socialized medicine keeps costs low by keeping people heatlhy, the US doctors just did business as usually.   There's was a scathing review of the American GI community in the Wall Street Journal...The link is 
http://post-gazette.com/pg/05343/620030.stm  

The developemnt of the tTg-IgA antibody test came on the scene just 5 years ago and makes it possible to find a celiac reaction before the symptoms are as dire as weight loss, diarrhea, and pretty much total villous attrophy--the old criteria. Since then, the progress has been incrrediable.  

I've been dx nearly 27 years & being celiac has never been better!
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The main Celiac Sprue immune suppressant genes (if turned on) are HLA-DWB1 (0201 or 0302).  The gene predisposing to gluten sensitivity are any DQ1, DQ2, not by 0201 or 0302.  

A person can have gluten sensitivity damaging the intestine on a sub-microscopic level destroying function or damaging other organs/tissues without having celiac sprue.

Sounds like you are in the middle of finding answers and more questions...confusing at the beginning of the journey.
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I think you are on track.  Diagnostic tests are not necessarily effective at detecting the condition or disease for which they are designed.  This field is forever evolving; any diagnostic test could be missing those who suffer, even though the test is considered 'gold standard'.  A good example is the TSH test for thyroid, which is not completely effective at identifying those who could benefit from thyroid medication. 
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I think that you are right on.  I was told that I tested negative to celiacs disease despite the fact that I had all the same symptoms.  Turns out that I am gluten intolerant and allergic to wheat and other gluten foods.  If I had listened to the first Dr who tested me I would be very sick now, as they did not even bring up the possibility of a gluten/wheat allergy.  I figured it out myself, and then with the help of an alternative MD.  I wonder how many people suffer needlessly because they tested negative on a test and nobody suspected an allergy or intolerance.
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Thanks!


      

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