Blood tests negative; is an endoscopy necessary?

[DPR]

My blood test results for food allergies came up negative across the board. My GI still wants me to undergo an endoscopy to see if I have celiac disease. I'd be shocked if I have celiac disease.

[tex]

I'd be shocked if I have celiac disease.

You're probably correct, because the type of gluten-sensitivity that most of us have, cannot be detected by the classic celiac diagnostic criteria. Unless you have fully-developed celiac disease, your small intestinal biopsies will show a Marsh 1 rating, (or less), like most of us, which indicates lymphocytic inflammation, but no villus atrophy, so the finding will be negative for celiac disease. Of course, there's a rare chance that you might have fully-developed celiac disease, so it's your call, depending on whether you want to submit to an upper endoscopy exam, to rule out celiac disease.

A stool test for anti-gliadin antibodies, at Enterolab, would provide much more useful information, but few GI docs are up-to-speed on that option, so they won't even consider it.

Please keep us posted, if you decide to go through with it.

Tex

[DPR]

Thanks for the info. I don't even think my body is sensitive to gluten. I think I'm in remission at the moment or close to it, and since I started introducing foods with gluten back into my diet I am actually feeling better. I had been gluten free for at least a month and it wasn't doing anything for me. I don't think eating foods with gluten is the reason I'm feeling much better, but I think it indicates that I am not sensitive to gluten.

I talked to my GI about enterolabs and stool testing and he said that he had looked into it and didn't think that there testing is very credible. From what I've read online before talking to him about it I'm pretty skeptical myself.

This post on a celiac forum really sparked my suspicion about enterolab.

I often get asked about Enterolab, as I don't hold their anti-gliadin stool testing in high regard.

Dr. Fine's story is pretty much on his website. He is a published expert on microscopic colitis. He started suspecting that in some patients the colitis was caused by an autoimmune celiac-like reaction. He was disappointed in the inaccurate serum tests so he developed highly sensitive stool tests. The discovery of gluten-caused microscopic colitis was a very nice piece of science.

The problem I have isn't with Enterolab isn't Dr. Fine's published work, but that he has never published anything on the the stool tests. When that happens, particularly in someone with a track record of publication, you have to wonder why they aren't publishing. Perhaps he wants to keep the methods proprietary but the other reason might be that he suspects the data he has collected so far won't pass a peer review. Also, most of his customers wouldn't read the paper anyway so it's not going to affect his revenue. He has a nice business going and only occasional scientist skeptics like me saying "hey, waitaminute..."

Enterolab runs the test with VERY low sensitivity levels. A staggering 60% of the people who approach Enterolab because they are feeling unwell have anti-gliadin in their stool, as do 29% of healthy volunteers. That means that half the folks with anti-gliadin IgA might be perfectly normal. There is research that IS peer-reviewed suggesting that stool anti-gliadin IgA can come and go as a normal part of immune function supporting this idea. Even serum anti-gliadin IgA can come and go. (That's why you want the newer celiac panel tests along with anti-gliadin.) The stool anti-TTG is a better test for celiac, but I haven't seen many people on the board come up with anti-TTG from Enterolab. One person who did have anti-TTG missed getting treated for Crohn's for over a year because Enterolab said she had celiac and didn't mention that she needed to see a doctor to rule out other GI disorders. Not cool.

Fine has his lecture slides posted at http://www.enterolab...renew/frame.htm (works best with Internet Explorer). The data are interesting and worth a glance if you're curious. It is generous of him to post them for the public. The problem that shows up in his slides and the reason I don't recommend Enterolab testing is because the long-term outcome data show that fecal anti-gliadin IgA is actually a poor predictor of whether someone will feel better on the diet. In other words, you get better information from trying the diet.

Also notice from his data that plenty of people without the fecal IgA felt better gluten-free. The testing isn't a substitute for giving the gluten-free diet a good strict try.

The genetics are fine if you're happy with only the HLA-DQ beta subunit. Enterolab gets the genetic testing done at Red Cross in case you were curious. Unlike some services, which only tell you if you're DQ2 or DQ8, you will get the full results. It does not test for alpha subunit. The genetic test is not diagnostic but many people find it interesting.

Also if you desparately need a piece of paper to wave at somebody, and you're willing to spend a fair amount of money to get it, Enterolab is a good bet. You have a 98% chance of getting at least a gluten-sensitive gene and a 60% chance of getting fecal IgA. Not half bad compared to how hard it is to get a typical GP or GI doctor to admit you're gluten sensitive!
http://www.celiac.com/gluten-free/blog/ ... viewpoint/

[Gabes-Apg]

for the 100's of people on this forum, hardly any have ever had reliable guidence for allergy or irritants from medically prescribed blood tests
Most of the people in this group that react to ingesting Gluten, came up negative on the celiac blood test.

Most of us have doctors/specialists that struggle to accept ingredients as the main irritants, and that changes in diet can minimise symptoms.

I have met two people that did test positive to the celiac blood test about 10 years ago. They gave up gluten for numerous years and then it gradually crept back into their diet. 2 years later they start having chronic symptoms again. One of them had the blood test it came up negative and then they had a endoscope and the villi of the intestine was damaged.
you may be tolerating Gluten ok with minimal symptoms, but if it is an allergen/irritant to you, then it will be doing damage to your intestine, as we get older, repairing that damage gets harder.

with the doctor saying one thing, articles on the net saying another, and forums like this saying something else it can all be very overwhelming. take the time to read some of the posts and articles on this site, there are alot of intelligent people that are willing to help

[tex]

Well, DPR, I read your quote written by that "expert" on laboratory testing methods, but I failed to find any substance in it, just accusations and innuendos. I have no idea why he or she has chosen to criticize the best source that we have available to us for determining food sensitivities with this disease, but evidently he or she has some agenda in mind, and the author conveniently fails to mention the most vital information, namely that Enterolab is fully-accredited by the state of Texas, and their tests are patented, in most of the developed countries of the world, so that no one else can use them for commercial testing purposes. Incidentally, despite that poster's claim to the contrary, Dr. Fine's test procedures have indeed been verified by their "peers" - a lab in Italy has published a verification using a process that is very similar to their patented testing procedure:

http://www.celiac.com/articles/740/1/It ... Page1.html

I won't go into detail about why Dr. Fine's research hasn't been published, (actually, much of it has, just not the most recent and most important part). That's a complex issue, that has been discussed here many times in the past, and if you're interested, you can find those topics in the archives. Suffice to say that he pissed off the top wheels in the medical "Good Old Boys Club", and so they refuse to allow his works to be published in the peer-reviewed medical journals. As far as Dr. Fine's professional integrity is concerned, you can check that out yourself, online, with the Texas Board of Medical Examiners. The last time I checked, (and I did indeed check), he had a clean slate, so obviously, no valid claims of malfeasance have been filed against him, or his practice. Since he has performed many, many thousands of tests for clients all over the world, I find it hard to believe that if he ran a shoddy, "snake oil" operation, he wouldn't have at least a collection of adverse rulings against him by now - he's been doing this for over 10 years, you know.

If you're happy with your GI doc's treatment, and you're in remission, that's great, but I can absolutely guarantee you that this is not the place to post BS questioning the validity of the tests offered by Enterolab, or Dr. Fine's integrity.

You claim that changes in your diet did not bring your "remission" - well what did? That's what counts. Anything that didn't bring remission is irrelevant, so why do you choose to dwell on what didn't, instead of telling us what did bring your remission? We're here to learn, so please tell us what worked for you.

Tex

[DPR]

Isn't it possible that the person is criticizing enterolab because he or she believes the testing isn't accurate, instead of having ulterior motives. He or she makes some pretty compelling points that I haven't found Dr. Fine refute or anyone else for that matter (which isn't to say they're correct or someone has shot those arguments down and I haven't found it). I understand that enterolab is accredited, but that doesn't have anything to do with whether or not stool testing for gluten sensitivity is accurate. Also, just because another lab is using the same kind of testing doesn't mean the accuracy of the test for gluten sensitivity's been verified. And isn't that article just about identifying celiac disease? That post from the celiac forum agreed that stool tests are effective in identifying celiacs.

I'm not an expert and am very new to researching all of this, but I am extremely skeptical by nature. What is pretty alarming to me is all the old posts from various forums that I've come across from 06, 07, 08, etc saying that Dr. Fine had said he's about to publish all his finding for peer review. I think I came across a post from 06 saying at that point he'd been saying for years that he was almost done his paper for peer review.

I don't mean to insult people here, but a lot of the arguments that I've seen here and elsewhere in favor of enterolabs sounds just like the arguments that pseudoscientists (I'm not calling you guys or Dr. Fine that since I really don't know enough to make a judgement) make to defend their beliefs. Most specifically that there is some sort of conspiracy in the scientific community to suppress information that goes against the status quo.

One thing that I find unfortunate with the internet and all this info at our disposal is that it is really easy to be tricked when it comes to science. If you don't know anything about science its very easy to be tricked into thinking, for example, that evolution is a lie. If we aren't experts in the relevant field that we are interested in its so easy to be tricked. Doctor's could easily be full of shi* and Dr. Fine could be correct, or it could be the other way around. Dr. Fine's behavior makes me very skeptical of him, and if the medical community is suppressing his research and won't publish it I don't see why he can't just release it on his own. Until he does so or until his findings are published in medical journals I'm not going to bother ordering his tests.

Changes in my diet definitely brought about helping me get better. I think the 1 change that made all the difference was limiting my fiber intake. For the past 4 or 5 years I've been a really healthy eater, and what I think brought about my first ever really bad flare up of colitis was actually taking my healthy eating to another level and became an extremely strict eater (which is pretty ironic). For the past couple of years (before my MC problems) I've always kept a food log counting calories, protein, carbs, fat, fiber, and at the time of my first major symptoms of MC I was eating 35-50g of fiber everyday, mostly from fruits and vegetables.

Cutting out gluten when I was diagnosed with CC brought that number down to about 25-40g of fiber per day (probably just north of 30 on average), which wasn't enough of a drop to make me feel noticeably better. Now that I'm just eating between 8-15g of fiber a day, I'm feeling much much better and I'm really pissed at myself for not cutting out all that fiber sooner.

[Gabes-Apg]

you have a right to your approach and opinion

be mindful of the fact that the Big Pharmaceutical companies (big pharma) OWN the journals. the health systems to support patients of many countries (USA, Australia, UK) are reliant on taxes and profits from pharmceutical sales.

once Doctors finish their uni degree- the only ongoing education they are required to do to maintain their qualifications is coordinated by big pharma.

most of the research into treating illnesses is funded by Big Pharma, and 'published articles' are generally published to link to the launch of a new med.

having an article published doesnt make that treatment, that test, that approach credidible. In 90% of cases it means that someone (generally big pharma) can make a profit from it.

I agree that for every theory you can find on the net, there is an article that can print words to discredit that theory. Regardless of where you live, and what medical system you are using, there is one thing about MC that applies to everyone, there is not right way or wrong way - there is your way.
what ever works for you to minimise symptoms occuring and to have a functional digestion system is the key to success.

[tex]

DPR,

Low fiber is part of the treatment regimen that we've always recommended here, so you're certainly on the right track with that.

Since you seem to have a problem researching the issues surrounding Dr. Fine's publishing status, please read the thread at the following link, and please read it carefully. Please read all of the posts, but give special attention to my initial post, and to the posts written by Cara, (jcc), on pages 2 and 3 of the thread. Cara is a former member of the old original braintalk forums, who, (along with a couple of friends who were also braintalk contributors, started their own website, after the original braintalk forums crashed and burned a few years ago. She and her crew know their stuff.

Regarding other posters in that thread, Mary Beth is a licensed dietitian, who has MC, and Polly is a practicing MD, who has MC, so please take note of what they have to say, also.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9970

In case you're interested, Cara's website can be found at:

http://glutenfreeandbeyond.org/forum/index.php

Are you sure you're not from Missouri? Seriously, If reading the thread that I've referenced above, (and reading it with an open mind), doesn't convince you, then you might see if Cara and her members are willing to try to enlighten you. I truly hate to see someone who probably has good intentions, spreading such misinformation around the internet. As you say, it's hard enough to find valid information that we can trust, without someone badmouthing a legitimate laboratory. There are plenty of labs on the internet that offer worthless tests that deserve your criticism, Enterolab is not one of them.

Tex

[DPR]

you have a right to your approach and opinion

be mindful of the fact that the Big Pharmaceutical companies (big pharma) OWN the journals. the health systems to support patients of many countries (USA, Australia, UK) are reliant on taxes and profits from pharmceutical sales.

once Doctors finish their uni degree- the only ongoing education they are required to do to maintain their qualifications is coordinated by big pharma.

most of the research into treating illnesses is funded by Big Pharma, and 'published articles' are generally published to link to the launch of a new med.

having an article published doesnt make that treatment, that test, that approach credidible. In 90% of cases it means that someone (generally big pharma) can make a profit from it.

I agree that for every theory you can find on the net, there is an article that can print words to discredit that theory. Regardless of where you live, and what medical system you are using, there is one thing about MC that applies to everyone, there is not right way or wrong way - there is your way.
what ever works for you to minimise symptoms occuring and to have a functional digestion system is the key to success.

That all might be true but Dr. Fine could easily post his findings online.

Thanks Tex. Actually I was born in Houston, lived there for less than a month, and my family moved to where I still live to this day, about 30 miles north of Philadelphia . I'm exhausted from studying for the LSATs so I'll check out those links tomorrow. Do any of those links answer any of the criticisms of the original post that I quoted, especially the claim that "stool anti-gliadin IgA can come and go as a normal part of immune function supporting this idea. Even serum anti-gliadin IgA can come and go" and also why "the long-term outcome data show that fecal anti-gliadin IgA is actually a poor predictor of whether someone will feel better on the diet; In other words, you get better information from trying the diet"?

This is another interesting post by "Skylark"

How do I back up my statements? I couldn't figure out how to link to PubMed to show empty search results on a search with Fine as author and "antibodies". Typing "fecal antibodies celiac" into PubMed produces only 34 results in the whole database, and there are really no studies that support Fine's assertions.

The genetic testing interpretation is interesting at Enterolab. Basically, if you order a genetic test, you have better than 81% chance of Enterolab telling you that you are predisposed to gluten sensitivity.

From their FAQ. "How common are the gluten sensitivity and celiac genes?"

DQ2 is present in 31% of the general American population. DQ8 (without DQ2) is present in another 12%. Thus, the main celiac genes are present in 43% of Americans. Include DQ1 (without DQ2 or DQ8), which is present in another 38%, yields the fact that at least 81% of America is genetically predisposed to gluten sensitivity. Of the remaining 19%, most have DQ7,7 (an allele almost identical in structure to DQ2,2, the most celiac-predisposing of genetic combinations) which in our laboratory experience is associated with strikingly high antigliadin antibody titers in many such people. Thus, it is really only those with DQ4,4 that have never been shown to have a genetic predisposition to gluten sensitivity, and this gene combination is very rare in America..."

For the stressed-out person wanting something to confirm their dietary gluten sensitivity, it doesn't get any better than that!

The Enterolab FAQ page says in reference to stool antibodies "Extensive research has revealed that this hypothesis is true, and has resulted in the development of new methods for detection of gluten sensitivity, celiac sprue, and other food sensitivities." but the statement is not referenced at all.

Here is a recent study on serum and anti-gliadin IgA. The authors did fecal as well as serum anti-gliadin antibodies and for starters they found a poor correlation between the two.
"CONCLUSIONS: In both studied populations of adults and children, AGA disappeared in more than 50% of the cases. The appearance of AGA has to be interpreted as a non-specific immunomodulation phenomenon, confirming the low specificity of AGA as a serologic marker for celiac disease."
http://www.ncbi.nlm....pubmed/16607144

This fecal antibody study on anti-gliadin IgA and anti-TG2 IgA came to the conclusion "Neither stool test was suitable for screening for coeliac disease in children with symptoms."
http://www.ncbi.nlm....pubmed/16377644

The really good assay for genetic gluten sensitivity and/or celiac is for either IgG or IgA against anti-deamidated gliadin, which as far as I can tell Enterolab doesn't use.
http://www.ncbi.nlm....pubmed/20022983
http://www.ncbi.nlm....pubmed/20456302
http://www.ncbi.nlm....pubmed/20171961

Even deamidated gliadin IgA can disappear with time, making it still an iffy marker in the absence of anti-TG2 or anti-endomysial antibodies.
http://www.ncbi.nlm....pubmed/20357057

Anti-TG2 is known to be problematic and prone to cross-reactivity.
http://www.ncbi.nlm....pubmed/15936306
http://www.ncbi.nlm....pubmed/16987503

This study shows that fecal anti-TG2 antibodies are a marker for inflammatory bowel disease and that anti-endomysial antibodies are a better marker for celiac.
http://www.ncbi.nlm....pubmed/15552265

And studies showing that fecal anti-endomysial antibodies would be the correct marker for celiac.
http://www.ncbi.nlm..../pubmed/8210980
http://www.ncbi.nlm....pubmed/11808976

So, basically Enterolab is looking at anti-gliadin IgA, which might be produced by normal immune systems, and anti-TG2 IgA, which is produced in other disease states.

The markers specific for gluten sensitivity and celiac disease would be probably be fecal anti-deamidated gliadin IgA/IgG and fecal anti-endomysial IgA.

This doesn't even begin to address the issues of assay accuracy and reliability, false positives, false negatives, and other information about the tests that is not provided by Enterolab.

[tex]

DPR,

Well, it's pretty easy to see why you, (and your "Enterolab-bashing expert"), are so confused.

The biggest problem appears to be that both you, and EBE, are confused about how the immune system works. If the fact that IgA antibodies fade with time, is what you are basing your skepticism on, you're quite lost, and you don't understand how the adaptive immune system works. Of course IgA antibodies fade with time. When someone sensitive to gluten eliminates it from their diet, the immune system begins to gradually discontinue the production of those antibodies, and they very slowly fade away. If gluten is later reintroduced into the diet, expedited production is resumed, of course.

It's a adaptive response - not an innate response. That's exactly what makes IgA anti-gliadin antibodies such a good, (specific), indicator of gluten-sensitivity. IgG antibodies are indicators of a "mature" reaction, and linger much longer, but they're not nearly as specific as IgA antibodies, for detecting food-sensitivities. IgA antibodies are superior for that task. Yes, the half-life of IgA antibodies is approximately 6 days. Even so, due to the lingering production of benign IgA antibodies by the adaptive immune system, anti-gliadin antibodies can be reliably detected in stool for at least a year after gluten is withdrawn from the diet. The serum tests for AGA includes both IgA antibodies, and IgG antibodies, while the stool test only looks for IgA antibodies. The half-life of AGA is 120 days, but that's irrelevant if serum is used as the test medium, because the sensitivity of AGA in serum is so low, (and the rate of false negatives is so high). The antibodies associated with food-sensitivities are produced in the gut, (not in the blood), so it's not surprising that they would be so much more easily detected in stool. The markers of celiac sprue can typically be discovered in stool, several years before the disease progresses to the point where sufficient antibodies are present in the blood, to yield a positive serum test result. It's ridiculous to use a blood test, to look for food reactions that occur in the gut, when the stool tests are so much more sensitive.

If you will go to the trouble to spend some time learning about how the immune system actually works, rather than relying on what some anonymous stranger says about testing for antibodies, you can see and judge for yourself, whether or not Enterolab's system is valid.

To address your other claims:

That all might be true but Dr. Fine could easily post his findings online.

Well, I could be having hallucinations, but it appears to me that he has posted his findings online. Have you ever bothered to look for information on his web site? That's a good place to start. He has discussions on microscopic colitis, gluten-sensitivity, celiac sprue, etc. His curriculum vitae lists 30 articles in peer-reviewed journals. Have you ever read any of them? As you can see, he was doing a lot of publishing, until the "Good Old Boys Club" decided to stonewall him, so that his articles were no longer eligible to be accepted to appear in peer-reviewed journals.

Here's one of the articles posted on his website that includes some insight into how his test procedure works. Have you ever read it?

http://www.enterolab.com/StaticPages/Ea ... nosis.aspx

The following information is also posted there, but if you don't place any value in government certifications or any other official verification, I'm probably wasting my time trying to open your eyes, because you seem to have your mind made up, (by someone else's misguided writings).

EnteroLab is registered with the U.S. Government's Department of Health and Human Services department as part of the Clinical Laboratory Improvement Amendments (CLIA). This agency oversees clinical laboratory standards and quality. We have also opted for (at our own expense) third-party accreditation from COLA, a non-profit national laboratory accreditation organization. EnteroLab passed this accreditation inspection in 2001 and re-accreditation in 2003, 2005, 2008 and 2010 with the highest standards. COLA accreditation is given only to laboratories that apply rigid standards of quality in day-to-day operations and pass a rigorous on-site laboratory survey. COLA is approved by the federal government and sponsored by the American Medical Association, the American College of Physicians-American Society of Internal Medicine, the American Academy of Family Physicians, the College of American Pathologists, and the American Osteopathic Association.

If you want the exact details on how his testing procedure works, you could have looked up his patent, which explains it in detail.

http://www.freepatentsonline.com/7604957.html

And here's an earlier patent that he holds:

http://www.freepatentsonline.com/6667160.html

Please note that patents are most definitely a form of publishing, and they are carefully peer-reviewed, before approval. If you carefully read all the details in those patents, you will see that they contain proof that his invention works.

Have I made my case?

Tex

[jmayk8]

My blood tests came back negative for Celiac but, I went thru with the endopscopy anyways. I found out all of my villi were almost completely gone, I had fully-developed celiac disease...