No popular authors found.

Categories

No categories found.


Join Celiac.com's forum / message board and get your questions answered! Our forum has nearly 1 MILLION POSTS, and over 62,000 MEMBERS just waiting to help you with any questions about celiac disease and the gluten-free diet. We'll see you there!






Follow / Share


  FOLLOW US:
Twitter Facebook Google Plus RSS Podcast Email  Get Email Alerts

SHARE:

Popular Articles

No popular articles found.
Celiac.com Sponsors:

Early Diagnosis of Gluten Sensitivity: Before the Villi are Gone by By Kenneth Fine, M.D.

This article originally appeared in the Winter 2004 edition of Celiac.com's Scott-Free Newsletter. Transcript of a talk given by Kenneth Fine, M.D. to the Greater Louisville Celiac Sprue Support Group––transcribed by Marge Johannemann; Edited by Kelly Vogt.

Celiac.com 03/04/2004 - Gluten sensitivity is the process by which the immune system reacts to gluten contained in wheat, barley, rye, and oats. The reaction begins in the intestine because that is where the inciting antigen, gluten, is present (from food). When 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). The clinical focus of gluten-induced disease has always been on the intestine because that is the only way the syndrome was recognized before screening tests were developed. The intestinal syndrome consists mainly of diarrhea, gas, bloating, nausea, vomiting, fat in the stool, nutrient malabsorption, and even constipation. Although the small intestine is always the portal of the immune response to dietary gluten, it is not always affected in a way that results in villous atrophy. Even though recent research has shown that celiac disease is much more common than previously suspected, affecting 1 in 100-200 Americans and Europeans, past and emerging evidence indicates that it accounts for only a small portion of the broader gluten sensitive clinical spectrum (often referred to as the “Tip of the Gluten Sensitive Iceberg”). With better understanding of how gluten triggers immune and autoimmune reactions in the body under the control of various genes, and advancing techniques of detecting these reactions, it is becoming apparent that the majority of the gluten sensitive population (the submerged “mass of the iceberg”) do not manifest villous atrophy in its classic, complete form and therefore do not have celiac disease. In these non-celiac, gluten sensitive individuals, the brunt of the immune reaction either affects the function of the intestine, causing symptoms without structural damage, affects other tissues of the body (and virtually all tissues have been affected in different individuals), or both. This is important because the commonly used diagnostic tests of clinically important gluten sensitivity (blood tests for certain antibodies and intestinal biopsies) are only positive when villous atrophy of the small intestine is present. But if only a small minority of gluten sensitive individuals actually develop celiac disease, the majority, who have not yet or may never develop villous atrophy, with or without symptoms, can remain undiagnosed and untreated for years. This can result in significant immune and nutritional consequences, many of which are irreversible even after treatment with a gluten-free diet. Some of these disorders include loss of hormone secretion by glands (hypothyroidism, diabetes, pancreatic insufficiency, etc), osteoporosis, short stature, cognitive impairment, and other inflammatory bowel, liver, and skin diseases, among others. Only with early diagnosis, can these problems be prevented or reversed.

I am here to report on a scientific paradigm shift regarding early diagnosis of gluten sensitivity based on about 30 years of medical research by myself and others. My message is that earlier and more inclusive diagnosis of gluten sensitivity than has been allowed by blood tests and intestinal biopsies must be developed to prevent the nutritional and immune consequences of long-standing gluten sensitivity. Imagine going to a cardiologist because your blood pressure is high or you’re having chest pain, and the doctor says he is going to do a biopsy of your heart to see what is wrong. If it ‘looks’ O.K., you are told you have no problem and no treatment is prescribed because you have not yet had a heart attack showing on the biopsy. You would not think very highly of the doctor utilizing this approach because, after all, isn’t it damage to the heart that you would want to prevent? But for the intestine and gluten sensitivity, current practice embraces this fallacious idea that until an intestinal biopsy shows structural damage, no diagnosis or therapeutic intervention is offered. This has to change now because with newly developed diagnostic tests, we can diagnose the problem before the end stage tissue damage has occurred, that is “before the villi are gone,” with the idea of preventing all the nutritional and immune consequences that go with it.

There are many misconceptions regarding the clinical presentation of gluten sensitivity or celiac disease: For example, that you cannot be gluten sensitive if you have not lost weight, are obese, have no intestinal symptoms, or are an adult or elderly. However, the most widely held and clinically troublesome misconception is that a negative screening blood test, or one only showing antigliadin antibodies (without the autoimmune antiendomysial or anti-tissue transglutaminase antibody) rules out any problem caused by gluten at that time or permanently. For some reason, the high “specificity” of these blood tests has been tightly embraced. Specificity means if the test is positive, you surely have the disease being tested for with little chance that the positive is a “false positive.” But sadly, a negative test does not mean you do not have the problem. This is the biggest pitfall of all because the only thing a very specific test, like blood testing for celiac disease, can do is “rule in” the disease; it can not “rule it out.” If you’ve got very far advanced and/or long-standing celiac disease, it is likely that the test will be positive. However, several studies have now revealed that it is only those with significant villous atrophy of the small intestine who regularly show a positive antiendomysial or anti-tissue transglutaminase antibody, the specific tests relied upon most heavily for diagnosis of gluten-induced disease. When there was only partial villous atrophy, only 30% had a positive test. More disturbing perhaps, were the results with respect to screening first degree relatives of celiacs with blood tests. Despite some biopsy-proven early inflammatory changes in the small intestine but without villi damage, all blood tests were negative.

For some reason, it’s been perfectly acceptable to celiac diagnosticians that a patient must have far advanced intestinal gluten sensitivity, i.e., villous atrophy, to be diagnosed and a candidate for treatment with a gluten-free diet. That means from the specific testing standpoint, there’s never (or rarely) a false positive. But what about the larger majority of gluten-affected people who do not presently have or may never get this end stage, villous atrophic presentation? They are out of luck as far as blood testing is concerned. So the fact is that we have erroneously relied on specificity (always picks up gluten sensitivity after it has caused villous atrophy, never having a false positive) instead of sensitivity (doesn’t miss gluten sensitive people even though they might be picked up early, even before full-blown celiac disease develops). Would a test relying on specificity rather than sensitivity be good enough for you, or your children? Consider the risk of not getting an early diagnosis versus going on a gluten free diet a few months or years prematurely. While I do not recommend anyone to have a biopsy (especially children) for diagnosis because of the shortcomings and invasive nature of this technique, I particularly do not want someone to have a biopsy showing villous atrophy, since by that time, associated bone, brain, growth, and/or gland problems are all but guaranteed. And here is another related problem: You have a positive blood test, but, if a small bowel biopsy comes back normal or nearly normal, you are told that the blood test must have been a “false positive” and that gluten is not your problem. Would you believe that, especially in light of the fact that most such people would have gotten the blood test in the first place because of a specific symptom or problem? Let’s hope not. All that means (positive blood test, negative biopsy) is that the gluten sensitivity (evidenced by antibodies to gliadin in the blood) has not yet damaged your intestines severely.

Evidence of this comes from a study that I performed. We tested 227 normal volunteers with blood tests for celiac disease. Twenty-five of these people (11%) had either antigliadin IgG or IgA in their blood versus only one (0.4%) that had antiendomysial, anti-tissue transglutaminase, and antigliadin IgA in the blood. So for every one person in a population that has the antibodies that have 100% specificity for celiac disease of the intestine (antiendomysial and anti-tissue transglutaminase), there are 24 that have antibodies to gliadin that may not have celiac disease. So what is going on with the 11% with antigliadin antibodies in blood? Are these false positives (rhetorically)? You’re telling me that there is a disease called celiac disease and it is associated with antibodies to gliadin in the blood and sometimes it damages the intestine? But people with antigliadin antibody in their blood but no other antibodies do not have a clinically significant immunologic reaction to gluten? Do you see the problem? How can 11% be false positives? What about the 89% with none of these antibodies? You cannot equate having no antibodies at all (a negative test) with having antigliadin antibodies alone. If you have antibodies to gliadin, something is going on here. Where there’s smoke there’s fire. The purpose of this study was to test this hypothesis: That an antigliadin antibody alone does indicate the presence of an immune reaction to gluten that may be clinically important. Using tests for intestinal malabsorption and abnormal permeability (i.e., tests of small bowel function, unlike a biopsy which says nothing about function), we found that 45% of people with only an antigliadin IgG or IgA antibody in blood (without either antiendomysial or anti-tissue transglutaminase antibody) already had measurable intestinal dysfunction, compared to only 5% of people with no antibodies to gliadin in their blood. When we did biopsies of these people’s intestines, none had villous atrophy with only a few showing some early inflammation. Thus, having an antigliadin antibody in your blood does mean something: That there is nearly a 1 in 2 chance that functional intestinal damage is already present even though it may not be visible structurally at the resolution attained by a light microscope assessment of a biopsy.

As mentioned at the outset, not all gluten sensitive individuals develop villous atrophy. Evidence for this has been around for a long time. In 1980, a medical publication titled “Gluten-Sensitive Diarrhea” reported that eight people with chronic diarrhea, sometimes for as long as 20 years, that resolved completely when treated with a gluten-free diet, had mild small bowel inflammation but no villous atrophy. In 1996 in a paper called “Gluten Sensitivity with Mild Enteropathy,” ten patients, who were thought to have celiac disease because of a positive antiendomysial antibody blood test, had small bowel biopsies showing no villous atrophy. But amazingly, these biopsies were shown to react to gluten when put in a Petri dish, proving the tissue immunologically reacted to gluten (which was likely anyway from their positive blood tests). Two other reports from Europe published in 2001 showed gluten sensitivity without villous atrophy (and hence without celiac disease). In one of these studies, 30% of patients with abdominal symptoms suggestive of irritable bowel syndrome having the celiac-like HLA-DQ2 gene but no antibodies to gliadin in their blood, had these antibodies detected in intestinal fluid (obtained by placing a tube down into the small intestine). Thus, in these people with intestinal symptoms, but normal blood tests and biopsies, the antigliadin antibodies were only inside the intestine (where they belong if you consider that the immune stimulating gluten also is inside the intestine), not in the blood. This is the theme we have followed in my research, as we are about to see.

More proof that patients in these studies were gluten sensitive came from the fact that they all got better on a gluten-free diet, and developed recurrent symptoms when “challenged” with gluten. Although the gluten-sensitive patients in these studies did not have the villous atrophy that would yield a diagnosis of celiac disease, small bowel biopsies in many of them showed some, albeit minimal, inflammatory abnormalities. Yet, when a symptomatic patient in clinical practice is biopsied and found to have only minimal abnormalities on small bowel biopsy, clinicians do not put any stock in the possibility of their having gluten sensitivity. As much as I would like to take credit for the concept, you can see from these studies that I did not invent the idea that not all gluten sensitive patients have villous atrophy. It has been around for at least 23 years, and reported from different parts of the world.

For many years there has also been proof that the intestine is not the only tissue targeted by the immune reaction to gluten. The prime example of this a disease called dermatitis herpetiformis where the gluten sensitivity manifests primarily in skin, with only mild or no intestinal involvement. Now from more recent research it seems that the almost endless number of autoimmune diseases of various tissues of the body also may have the immune response to dietary gluten and its consequent autoimmune reaction to tissue transglutaminase as the main immunologic cause. A study from Italy showed that the longer gluten sensitive people eat gluten, the more likely they are to develop autoimmune diseases. They found that in childhood celiacs, the prevalence of autoimmune disease rose from a baseline of 5% at age two to almost 35% by age 20. This is a big deal if you think of how much more complicated one’s life is when one is both gluten sensitive AND has an additional autoimmune disease.

So preventing autoimmune disease is one very important reason why early diagnosis and treatment of gluten sensitivity is important. Early diagnosis before celiac disease develops also holds the potential of preventing other clinical problems such as malnutrition, osteoporosis, infertility, neurologic and psychiatric disorders, neurotube defects (like spina bifida) in your children, and various forms of gastrointestinal cancer. Another reason for early diagnosis and treatment is very straightforward and that is because many gluten sensitive individuals, even if they have not yet developed celiac disease (villous atrophy), have symptoms that abate when gluten is removed from their diet. Furthermore, from a study done in Finland, a gluten sensitive individual who reports no symptoms at the time of diagnosis can improve both psychological and physical well-being after treatment for one year with a gluten-free diet.

Despite the common sense and research evidence that early diagnosis of gluten sensitivity offers many health advantages over a diagnostic scheme that can only detect the minority and end-stage patients, until now, the limitation was still in the tests being employed. As mentioned above, the main tests used for primary (before symptoms develop) and secondary (after symptoms develop) screening for celiac disease, blood tests for antigliadin and antiendomysial/anti-tissue transglutaminase antibodies, are only routinely positive after extensive damage to intestinal villi. As shown in a 1990 publication, this is because unless you have full blown, untreated celiac disease, the IgA antibodies to gliadin are only INSIDE the intestine not in the blood. Measuring antigliadin antibody in blood and intestinal fluid (obtained by the laborious technique of having research subjects swallow a long tube that migrates into the upper small intestine), researchers found that in untreated celiacs, antigliadin antibody was present in the blood and inside the intestine, whereas after villous atrophy healed following a year on a gluten-free diet, the antigliadin antibody was no longer in the blood but was still measurable inside the intestine in those with ongoing mild inflammation.

An important conclusion can be drawn from these results, as these researchers and myself have done: Gluten sensitive individuals who do not have villous atrophy (the mass of the iceberg), will only have evidence of their immunologic reaction to gluten by a test that assesses for antigliadin IgA antibodies where that foodstuff is located, inside the intestinal tract, not the blood. This makes sense anyway, because the immune system of the intestine, when fighting an antigen or infection inside the intestine, wages the fight right in that location in an attempt to neutralize the invading antigen, thereby preventing its penetration into the body. It does this with T cells on the surface of the epithelium, the intraepithelial lymphocytes, and with secretory IgA made with a special component called secretory piece that allows its secretion into the intestine.

The excellent English researchers that made the discovery that they could detect the immunologic reaction to gluten inside the intestine before it was evident on blood tests or biopsies knew it was a breakthrough, testing it many times over in different ways, and further extending the clinical spectrum of gluten-induced disease to include a phase before the villi are damaged, so-called “latent celiac sprue”. Furthermore, they developed this technique of assessing the intestinal contents for antigliadin antibodies into what they viewed as a “noninvasive screening test for early or latent celiac sprue” (what others and I would simply call “gluten sensitivity”). However, this was not exactly noninvasive, nor was it simple. It still required the patient to swallow a tube, followed by a complete lavage of all their gastrointestinal contents with many gallons of nonabsorbable fluid that had to be passed by rectum and collected into a large vat to be analyzed for the presence of antigliadin antibodies.

While this was indeed a conceptual breakthrough, it practically went unnoticed by the medical community because the cumbersome procedure of washing out the intestine just could not be done in a normal clinical setting. To this day, I am not sure how many people even know that it was not me, but rather this well known celiac research group, led by the late Dr. Anne Ferguson, who pioneered the assessment of the intestinal contents as a viable and more sensitive source of testing material for the early reactions of the immune system to gluten. What we did in my research was to refine and simplify the method of collecting and measuring these intestinal IgA antigliadin antibodies before they can be detected in blood. That is, instead of washing out the antibodies from the intestine, we allow them to be excreted naturally in the stool (feces). And so with that idea, and our ability to measure these antibodies in stool, as others before us had done for fecal IgE antibodies directed to food antigens, our new gluten (and other food) sensitivity stool testing method was born.

It was actually my research of microscopic colitis that led me to discover that stool analysis was the best way of assessing for gluten sensitivity before celiac disease develops. Microscopic colitis is a very common chronic diarrheal syndrome, accounting for 10% of all causes of chronic diarrhea in all patients, and is the most common cause of ongoing chronic diarrhea in a treated celiac, affecting 4% of all celiac patients. However, from my published research, despite the presence of the celiac HLA-DQ2 gene in 64% of patients with microscopic colitis, very few get positive blood tests or biopsies consistent with celiac disease. Yet, small bowel biopsies revealed some degree of inflammation sometimes with mild villous blunting in 70% of cases. According to the facts and previously discussed shortcomings of celiac blood tests, antibodies to gliadin are unlikely to be detected in the blood in these patients because they lack villous atrophy. So negative blood tests for antigliadin antibodies per se did not, in my mind, rule out the possibility that these patients with microscopic colitis, a disease that under the microscope looks like celiac disease (but of the colon), and that affects many celiac patients, were not gluten sensitive themselves. But as Dr. Ferguson’s research revealed, these antibodies might be detectable inside the intestine. And since we surely were not going to perform that cumbersome intestinal lavage test in my patients, we decided to see if we could find these antibodies in the stool as a reflection of what is coming through the intestine.

Here’s the first set of data that we found showing the superior sensitivity of stool testing versus blood tests for antigliadin IgA antibodies. In untreated celiac disease patients, we found a 100% positivity in the stool versus only 76% in blood. In hundreds of microscopic colitis patients since tested, only 9% have antigliadin antibody in blood but 76% have it in stool. And the same is true of 79% of family members of patients with celiac disease; 77% of patients with any autoimmune disease; 57% of people with irritable bowel syndrome-like abdominal symptoms; and 50% of people with chronic diarrhea of unknown origin, all of whom have only about a 10-12% positivity rate for blood tests (like normal volunteers). Thus, when you go to the source of production of these antibodies for testing, the intestine, the percentage of any population at a higher than normal genetic and/or clinical risk of gluten sensitivity showing a positive antigliadin stool test is 5 to 7.5 times higher than would be detected using blood tests. In normal people without specific symptoms or syndromes, the stool test is just under 3 times more likely to be positive than blood (29% vs. 11%, respectively). That’s a lot more people reacting to gluten than 1 in 150 who have celiac disease. 29% of the normal population of this country, almost all of whom eat gluten, showing an intestinal immunologic reaction to the most immune-stimulating of dietary proteins really is not so high or far fetched a percentage, especially in light of the fact that 11% of them display this reaction in blood, and 42% carry the HLA-DQ2 or DQ8 celiac genes.

Why is this so important? Because some people with microscopic colitis never get better when they’re treated, and most autoimmune syndromes only progress with time, requiring harsh and sometimes dangerous immunosuppressive drugs just for disease control. If the immune reaction to gluten is in any way at the cause of these diseases as research suggests, and if we had at our disposal a sensitive test that can diagnose this gluten sensitivity without having to wait for the intestinal villi to be damaged, then treatment with a gluten free diet might allow the affected tissues to return to normal or at least prevent progression. We now have that test in fecal antigliadin antibody. Just a few weeks ago we completed the first follow-up phase of our study: What happens when a gluten sensitive person without villous atrophy goes on a gluten-free diet for one or two years. While I am still gathering and analyzing the data, most of the subjects reported a much improved clinical status (utilizing an objective measure of symptoms and well being). Not everybody gets well, because sadly not everyone stays on a gluten-free diet (as they sometimes admit on the surveys). Some people have the misconception that if they don’t have celiac disease, but “I just have gluten sensitivity” then maybe they do not have to be strict with their gluten elimination diet. I do not think that is the case. Although a gluten free diet is like anything: Less gluten is not as damaging as more gluten, but certainly no gluten is optimal if a gluten sensitive person desires optimal health.

Of the first 25 people with refractory or relapsing microscopic colitis treated with a gluten-free diet, 19 resolved diarrhea completely, and another five were notably improved. Thus, a gluten-free diet helped these patients with a chronic immune disease of a tissue other than small bowel (in this case the colon), who have been shown to be gluten sensitive by a positive stool test in my lab. The same may be true of patients with chronic autoimmune diseases of any other tissue, but who do not have full-blown celiac disease. Gluten-free dietary treatment, sometimes combined with dairy-free diet as well, has been shown to help diabetes, psoriasis, inflammatory bowel disease, eczema, autism, and others.

Thus, my approach (and I believe the most sensitive and most complete approach) for screening for early diagnosis and preventive diagnosis for clinically important gluten sensitivity is a stool test for antigliadin and anti-tissue transglutaminase IgA antibodies (IgG is not detectable in the intestine) and a malabsorption test. The malabsorption test we developed is special, because you no longer have to collect your stool for three days; we can find the same information with just one stool specimen. Stool testing in combination with HLA gene testing, which we do with a cotton-tipped swab rubbed inside the mouth, is the best diagnostic approach available for gluten sensitivity.

Who should be screened for gluten sensitivity? Certainly family members of celiacs or gluten sensitive people being at the highest genetic risk. For the most part, all of the following patient groups have been shown to be at higher risk than normal for gluten sensitivity: Chronic diarrhea; microscopic colitis; dermatitis herpetiformis; diabetes mellitus; any autoimmune syndrome (of which there is an almost end-less number like rheumatoid arthritis, multiple sclerosis, lupus, dermatomyositis, psoriasis, thyroiditis, alopecia areata, hepatitis, etc.); Hepatitis C; asthma; chronic liver disease; osteoporosis; iron deficiency anemia; short stature in children; Down’s syndrome; female infertility; peripheral neuropathy, seizures, and other neurologic syndromes; depression and other psychiatric syndromes; irritable bowel syndrome; Crohn’s Disease; and people with severe gastroesophageal reflux (GERD). Autism and possibly the attention deficit disorders are emerging as syndromes that may improve with a gluten- free (and additionally casein-free) diet. A diagnosed celiac might be interested in our testing to know (after some treatment period no shorter than a year) that there is no on-going damage from malabsorption, for which we have a test. If a celiac is having ongoing symptoms or other problems, a follow-up test should be done just to be sure there’s no hidden gluten in the diet, or something else that could be present, like pancreatic enzyme deficiency which often accompanies celiac disease, especially in its early stages of treatment.

Historically, with respect to diagnostic methods for celiac disease, from 100 A.D., when celiac disease was first described as an emaciating, incapacitating, intestinal symptom-causing syndrome, to 1950, we had just one diagnostic test: Clinical observation for development of the end stage of the disease. Then in 1940 to 1960, when the discovery of gluten as the cause of celiac disease occurred, the best diagnostic test was removing gluten from the diet and watching for clinical improvement. It was during this period that the 72-hour fecal fat and D-xylose absorption tests were developed as measures of gluten-induced intestinal dysfunction/damage. In the mid- to late1950’s, various intestinal biopsy methods were pioneered and utilized, showing total villous atrophy as the diagnostic hallmark of celiac disease. You’ve heard the intestinal biopsy called the “gold standard”; well as you can see, it is a 50 year-old test, and thus, the “old” standard. It was not until the 1970’s and 80’s (and improved upon in the 1990’s) that blood tests for antigliadin and antiendomysial/anti-tissue transglutaminase were developed, but again these tests like all methods before, can reliably reveal only the “heart attack” equivalent of the intestinal celiac syndrome: Significant villous atrophy or bad celiac disease.

We are in a new century, a new millennium, and I have built upon what my research predecessors have started; mostly on the work of researchers who laboriously put down tubes and sucked out intestinal fluid for testing for antigliadin antibody when it was not present in blood. We now know that a stool test for antigliadin antibody is just as good and much simpler. The wide-reaching ramifications of knowing that so many more people and patients are gluten sensitive than have ever been previously known has led me to assume a professional life of medical public service. To do so, I started a 501(c)3 not-for-profit institute called the Intestinal Health Institute, have brought these new diagnostic tests to the public on the internet (at http://www.enterolab.com), and volunteer my time helping people with health problems by email and by lecturing. With greater awareness and education of both the public and medical community that early diagnosis of gluten sensitivity can be achieved before the villi are gone, more of the gluten sensitive iceberg will be diagnosed and treated early, leading to far fewer gluten-related symptoms and diseases than has ever been experienced before.

Dr. Fine has been an intestinal researcher and an academic and clinical gastroenterologist for 15 years. He is the Director of The Intestinal Health Institute and The www.EnteroLab.com Clinical Laboratory in Dallas Texas.

Celiac.com welcomes your comments below (registration is NOT required).



Related Articles




Spread The Word





38 Responses:

 
Laurie Andreoni, DC
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
31 Oct 2007 2:05:21 PM PST
Thanks for this. 'Celiac sprue' was mentioned in passing in school. After finding the majority of my patients were sensitive to wheat, and convincing them to eliminate just that grain from their diets, I've seen a multitude of symptoms resolved. I recently had a few new patients with celiac disease that were already on a gluten-free diet and still felt horrible. With appropriate nutrient supplementation, we're seeing a significant decrease in symptoms within 4-6 weeks. It's a beginning, but as they get better, the referrals increase and we can find out more. An article like yours is an enormous help to a 'newbie' like myself.

 
Kamal Rastogi MD
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
02 Dec 2007 10:52:07 AM PST
Certainly, this research article is an excellent information for my practice.

 
an unknown user
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
21 Dec 2007 12:23:58 PM PST
Excellent references, good explanation.

 
ruth Ortiz
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
16 Jan 2008 12:33:36 PM PST
I appreciate the information. Have been 'treated' for IBS for over 25 years and it just kept getting worse. A nutritionist finally came to my rescue! I am feeling much better at 80 years of age.

 
Jennifer Shaft
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
12 Feb 2008 11:17:22 PM PST
My 9 year old daughter had an IgG mid to high positive but showed no intestinal damage. She has chronic constipation, is underweight and shows a number of other symptoms. Being released by the negative biopsy really bothered me because I was so sure that we had finally found our diagnosis. It's nice to know that I am not completely crazy. I am bookmarking this for my husband to read.

 
Sarah
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
18 Feb 2008 1:08:53 AM PST
This article is very informative and helpful to me and to anyone who will read it. I was diagnosed with
gastroparesis a year ago. I already had IBS an umbilical hernia and was told last week that I have mesentericitis. I was told in 2001 I had lupus--yuck--just shoot me. lol. Because I've suspected being gluten sensitive for over a year, but haven't been tested so I'm not sure I can handle hearing anymore. I get an endoscopy/colonoscopy every year because my Mom's sister and brother both died of colon cancer. My Dr.GI takes biopsies on both so far was told I had hemorrhoids, so had surgery last September. Very frustrating when I've always eaten so healthy I thought. I never smoked or drank and I eat fish/chicken/veggies/fruits and never coffee. I do drink hot tea. What a mess my poor digestive system is in.

 
tami
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
03 Feb 2010 9:35:20 PM PST
Hi I was wondering if you found any information on mesentericitis. I was just told I had this. My doctor doesn't know how to treat it. Thank you.

 
Maurice Conard
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
19 Feb 2008 4:35:29 PM PST
I have been frustrated by the M.D. Gastroenteroligists in my city of Winchester, VA. They have told two of us they can do no more for us.

No stool tests were ever considered. A biopsy (colonoscopy) was taken of the colon but according to your data that means nothing.

I was diagnosed with small intestinal bacterial overgrowth and treatment was antibiotic, Neomycin for 14 days. I gained weight for five days after treatment ended and then started losing weight again and have lost another 10 pounds. This is nearly 50 pounds in four years. Went on antibiotic for second time out of necessity.

Assured I did not have cancer but again only blood tests were done. I get joint pains at times that swell a little and come and go. Usually, the joint pains start and hour or two after meals. Probably eating something wrong.

My digestive system is also a mess with constipation, but not extremely bad most of the time. I have only had diarrhea three times since the real blitz hit in September 2007. Yet, I had a big diarrhea session back in February 2007 and that may have been viral and triggered this.

Thank you very much for your work and concern for others. Most doctors today just want to give you a pill. That cures nothing and eventually does more damage than good.

 
ronna fisher
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
20 Aug 2015 5:08:46 AM PST
There is no way, my dear son that you read all this. If you did, it does go a long way in describing my life. I had all these special blood tests...positive. Then the endoscopy, blunting of the villi. If you read it, it sucks!

 
Dee
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
10 Mar 2008 9:02:41 PM PST
Reading these comments lets me see that I'm not alone. I have had symptoms of C-IBS for most of my life. In 2005 it flipped to diarrhea prominent with constant flares. My GI doc noted small intestinal inflammation on a biopsy, but the blood celiac panel 'ruled' it out. I actually asked for the blood test after discovering that my 5-year-old nephew had been diagnosed with celiac sprue and our symptoms were almost identical. Three years later I am still sitting with an IBS diagnosis. I am severely malnourished...cupped fingernails, osteoporosis, joint pain, thinning hair. People who have not seen me in years are shocked at my being skin and bones and immediately assume I suffer from an eating disorder. (I eat huge amounts of food and still remain a pitiful 90 lbs at best.) I need help, but the medical community treats me as though I'm a neurotic hypochodriac because I look so great 'on paper' when they test for other diseases (thyroid, adrenal function, liver function, etc.) I'm so tired of looking like a skeleton with skin. All my muscle has wasted away. I will sometimes gain a bit of the weight back and then another flare hits and I'm back down to under 90 lbs again. I just wish someone would help me, but when I brought up this article to three different specialists they all told me it was false..if the blood tests were negative and the 'pill cam' showed nothing, then it's IBS. I hate to cut out gluten unnecessarily, but who do you believe? I either have to go with my physicians' opinions (chosen by my insurance company) that I have IBS or undergo tests that, if positive, they will refuse to recognize as valid proof of a gluten sensitivity.

 
Sarah K
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
10 Feb 2010 1:43:39 PM PST
My recommendation is to go on a strict gluten free diet for no shorter time than 1 year like Dr. Fine in this article says, you have nothing to lose and everything to gain. Be strict about it, it's not that hard to do. That's what I am doing after 8 years with symptoms (IBS and peripheral neuropathy) I can find no other answer and am feeling a little different after 3 weeks on gluten free. Good luck.

 
Nancy
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
21 Mar 2008 7:32:28 PM PST
Dee, # 8 My 24 year old son diagnosed himself after many years of the Md saying it's IBS and just take Imodium. He had strong urges to eat gluten products but refrained from eating , using rice potatoes, and other starches. He has been gluten free for over a year now and is gaining the weight that he never could before. All of the symptoms including bloating , gas , diarrhea, etc. have gone away. His body is much stronger now. No more dark circles and bulging under his eyes.

 
Aimee
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
07 Apr 2008 11:36:36 AM PST
Just because you don't have a true diagnosis doesn't mean you can't go ahead and try living gluten free and see if it helps. That's what I'm doing while my doctors are going down every other road and I'm much better for it.

 
Christina
Rating: ratingfullratingemptyratingemptyratingemptyratingempty Unrated
said this on
13 Apr 2010 12:14:39 PM PST
It really is not a good idea to go gluten free while doctors are running tests because it could indicate inaccurate results. There is no benefit to a gluten free diet unless you have a diagnosis of celiac and have the lab results and symptoms to prove true celiac.

 
Sara
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
05 Jun 2010 10:13:59 AM PST
I disagree with what someone posted here: Not just celiac's need to refrain from eating gluten. I have been diagnosed as gluten sensitive which is a precursor to celiac as well as having Hahimito's Thyroiditis (an autoimmune condition). So there are many people that will benefit from following a gluten free diet. I do agree that changing the diet should wait until after testing if that is what the patient wants - a definite test result. But you don't necessarily have to wait for testing to remove gluten from your diet if you feel you will benefit from it.

 
aaa
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
28 Mar 2012 10:08:27 PM PST
A diagnosis doesn't create benefit... if a person feels better on a gluten free diet, a diagnosis is worthless! listen to your body, not your doctor who only knows how to fill out prescriptions.

 
pk
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
15 May 2008 2:03:17 PM PST
Excellent and very informative, please suggest appropriate tests in India for me!

 
Lynda
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
28 Jun 2008 9:14:21 PM PST
I too have suffered for almost 17 years with many doctors telling me that I am just stressed out and treating me like a hypochondriac. I started out having severe stomach pains with diarrhea, fever, vomiting after meals - it felt like poison in my stomach. After I had a colonosopy and was diagnosed with IBS. Years later, after still feeling bad and going to an alternative doctor, I found out that I have several food allergies. After cutting out these foods I feel so much better. However, all the symptoms and pain have not gone away. The other symptoms, such as joint pain, mental fog, fatigue, numbness, etc. are still present and getting worse. I believe that my problem has something to do with celiac disease or some other digestive disease not diagnosed. If you have similar symptoms or believe you have IBS, Crohns, diverticulitis, etc. then you need to get a book entitled 'Breaking the Vicious Cycle' by Elaine Gottschall. The book is about eating a specific carbohydrate diet. I read it and tried the diet for 3 weeks. It was like night and day between how good I felt and the usual horrible way I have felt for years. The diet is hard, especially for someone like me that is a carbohydrate addict - sweet tea and chips and queso! I really want to get back on this diet , but at the same time I want to go to a doctor and get an accurate diagnosis. I am afraid to even try and see a doctor again because I don't want to waste the money, be insulted, or have another false label like IBS. Thanks for this website because it gives people like me hope and support.

 
Kate
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
15 Oct 2008 9:02:36 PM PST
Fantastic Article. I showed slightly elevated anti-gliadin to which my doctor said I was not coeliac - not even mentioning that I could still be intolerant despite several health problems. I was told I probably had IBS but there was not much else that could be done. Luckily another doctor re-reviewed the test and suggested I start a Gluten Free diet, this article has helped fill in some gaps.
I was wondering, I also have PCOS (Poly Cystic Ovaries Sydrome) and there is a lot of cross over in the symptoms and health issues (Diabetes, irregular menstrual cycles, fatigue). Has there ever been a link between the two problems established?

 
Archer
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
04 Nov 2008 9:02:51 PM PST
Thank you so much for your articles. They are full of so much valuable information and give me hope. I tested positive over a year ago with the IgA antibodies but my scopes came back negative. I still decided to go on a strict gluten free which I have been on for over 8 months now. I am feeling so much better but still have very sharp pains every time I eat in my lower left side of the colon (it's been that way for over 3 years now). To read that Pancreatic enzymes might be an issue was helpful as I was wondering this myself but didn't realize there was a link with Celiacs. My Dr. is now saying that it's IBS (which was his initial diagnosis) given that I am still having pain after 8 months of a strict diet. How long does it take for the gut to heal? I don't think I was misdiagnosed given my blood test results, family history (my mom has an autoimmune disorder of Lupus) and 'stomach problems' have run in the family for years. How do you test for pancreatic enzymes (or lack of)? Many thanks again for your wonderful site. It's been tremendously valuable to me over the past 8 months.

 
Sue
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
16 Jul 2013 1:21:04 PM PST
Archer, You could also be soy intolerant. My symptoms continued after eliminating gluten. Then I did some more reading and discovered SOY protein can be as bad as gluten. When I eliminated SOY all my symptoms disappeared.

 
Pro.Dr.
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
26 Dec 2008 4:35:07 AM PST
Thank you so much for your articles. EXCELLENT ARTICLES!

 
Crystal
Rating: ratingfullratingfullratingemptyratingemptyratingempty Unrated
said this on
14 May 2009 4:41:00 PM PST
My mom has been diagnosed with celiac for over 20 years now and I have just started getting really sick after a stomach flu. I've been through tons of tests including stool samples, blood samples, CT scans, endoscopy and a biopsy. the stool and the biopsy showed beginning signs of celiac disease but my doctor won't 'officially' diagnose me. Even though he has told me flat out that there is really nothing else that would explain my symptoms. (especially the history of celiac in my family) he tried to tell me yesterday that maybe I should go back onto a regular diet, just in case 'we are missing something', and I wanted to just strangle him because the day before I got incredibly ill just from a little cross contamination. I'm beyond frustrated and depressed that I can't get answers from the people that I need them from the most.

 
MJF
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
18 Sep 2009 9:18:45 AM PST
Thank you very much for this fantastic information. My Mom was diagnosed with celiac three years ago, has fibromyalgia, and this spring was found to have a cancerous tumor in her colon. I don't want to go down this same road. I have tested very high positive for only one of the five antibodies on the celiac sprue blood panel--a confusing result. My MD said he didn't know what to do about this because I don't have intestinal symptoms. But I am hypothyroid and have inflammation in other tissues/joints, all things that signal at least to me, the warning signs of celiac (latent celiac). Even without any kind of diagnosis or doctor telling me what to do, I am going gluten-free. What other choice is there?

 
delancy
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
06 Jan 2010 5:17:25 PM PST
What an exciting journey, you sent me on reading your article. The contents has opened more doors for exploration, which I will immediately embark on.

In the interim, I am clueless as to why the medical; professionals have not taken the opportunity to advance their cognitional efforts into this area. We the patients would not be held "hanging ourselves" do to our lack of knowledge provided by or personal care providers.

 
r. wade markham
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
28 Mar 2010 6:23:41 PM PST
I have many of the clinical findings described.

 
Lorraine
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
04 Apr 2010 2:46:26 PM PST
Great article with well-reasoned arguments. I just wish the medical community would catch up. I have had symptoms for the past 10 years, but always fairly mild. Now after surgery, my symptoms have increased in severity. However, I don't expect that the doctors in my area will properly diagnose me. Since I experienced relief on a gluten-free diet a couple years ago after following it for only about a month, I am just gonna do what I know is best for my body and cut out the gluten again.

 
jmb
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
20 Jul 2010 9:22:45 AM PST
This article is awesome! I am fairly sure that I am gluten-sensitive and that my dad had full blown celiac. He had diabetes and died from fatty liver disease & cirrhosis. I'm not going to wait for the medical community to catch up. It seems silly to waste time testing when I could potentially be solving the problem myself. I've decided to go on a gluten-free diet to see if it helps my symptoms. In addition to the standard symptoms, I also have a lot of brain fog and chronic fatigue after years of stress. I am hoping that helps.

 
Beverley Bath
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
01 Aug 2010 1:38:35 AM PST
I have found your article very helpful. I have been suffering from diarrhea for around 36 years now. Also have osteoporosis & arthritis. I have been told I have IBS, & am on Imodium & Codeine,which doesn't help a great deal. I did feel much better by cutting down on gluten .I will try cutting it out altogether. I am intolerant to most foods & medication .Many thanks.

 
jjp
Rating: ratingfullratingfullratingfullratingfullratingempty Unrated
said this on
12 Oct 2010 10:18:26 AM PST
Interesting that people report joint pain after ingesting gluten. I have also noted that but was reluctant to mention to doctor and be seen as a hypochondriac.

 
BioChemGirl
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
08 Feb 2011 4:33:03 PM PST
As an infant I presented with classic celiac symptoms, but my mother, who is also a nurse, decided not to put me through the agony of an intestinal biopsy, so there was no definitive diagnosis. Naturally, I rebelled as a teen and went off the diet, and didn't notice any GI symptoms. However, I did have chronic anemia, symptoms of hypoglycemia, and more recently fatigue which I chalked up to no longer being in my 20s. When I became pregnant for the 2nd time a few months ago I finally decided to get the blood test for celiac because I felt so absolutely miserable and because a few test results had come back a bit low: glucose, cbc, alkaline phosphatase, vitamin D, and marginal B12. Since my symptoms were so strong as an infant I was sure I'd test positive but no, according to the blood tests, although I had the presence of both anti-gliadin and anti-tTG in my blood, they weren't high enough to be positive for Celiac Disease. I was really confused, especially since my Vitamin D panel showed that despite taking around 900 IU a day my body was absorbing almost none of the supplements. Every time I did a search to see what could cause my abnormal test results I kept coming back to celiac. Then I found this article and it now all makes sense. I have been on a gluten free diet for almost a month and am feeling much better. Doctors really need to pay attention to gluten sensitivity and they need to stop ordering the blood test. It's clearly not sensitive enough and the range of symptoms goes well beyond the gastrointestinal. Thank you for this well written and well researched article.

 
lld
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
04 May 2011 4:06:22 PM PST
This article give me hope for a proper diagnosis yet. After years of classic celiac symptoms I finally saw someone (G.I., Internist, Allergist, Immunologist) and was bounced around. My Allergist suggested the celiac blood test and after some research I'm sure this is what I have. Then, I was devastated to learn they came back negative. I don't WANT celiac or gluten sensitivity--but i was sure i was on the road to finding answers and finally feeling better. Now I'm going to go get a second opinion, get a stool test, and if all else fails, cut out gluten and see how it goes. Thanks!

 
laila
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
18 Aug 2011 1:11:49 PM PST
My 2.5 year old son has a slightly decreased nTTG test and the biopsy showed no damage to villi but mild inflammation in the small intestine and stomach and mild reflux. He is now on gluten free for 3 months but not much better.. I want to know if it could be something else because being gluten free is not easy where i live and I want to be 100% sure first

 
Flavorflave
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
14 Nov 2011 2:12:43 PM PST
Can't believe the information I just read...being gluten sensitive for as long as I can remember, and not knowing what is was. Also thanks for making me realize that just because I don't have full blown celiac doesn't mean I can still eat gluten (even though its my weakness i.e.,: pizza and noodles, I hate the gluten free stuff). Knowing this now I can take the information and hopefully prevent autoimmune disorders in the future especially preventing it from harming my unborn children... Thanks so much!

 
Stephenie
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
05 Jan 2012 8:49:53 AM PST
This article gives me insight into what is wrong with us. Certain health problems have emerged strong and gluten intolerance, allergy, and sensitivity could be at the root of IBS, colon cancer, pancreatic cancer, and diabetes.

 
Kathe
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
13 Feb 2012 10:30:13 AM PST
Great article. The gluten-free diet is a healthy way to eat...unless you focus on gluten-free junk food. It is always best to be tested for celiac and other intestinal issues prior to going gluten-free. If other diseases are ruled out and you still feel miserable, try going gluten-free. Be sure you really are 100% gluten-free - check your OTC meds, prescriptions, cosmetics, etc, as well as all the food you eat.

 
Melynda
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
29 May 2012 5:00:15 AM PST
My daughter is 18 years old. I just happened to be talking to a friend who is a celiac and described her problems. To my horror I found that my own child, who has been suffering from "stomach" issues since she was 2 YEARS OLD could possibly be gluten sensitive. I went to a site and found she had EVERY SINGLE ONE OF THE SYMPTOMS. How did a physician miss this with 16 years of issues? How!? It irritates me heavily that not one doctor, even a pediatric gastro doctor, did NOT figure this out.
She is now married and lives out of state but with my help and concern I hope she finally finds some relief! As I write this she is in bed with severe stomach pains. Her hubby asked me for pepto early this morning. It probably has gluten in it.
I will certainly be coming back to your site to learn as much as I can. THANK YOU SO MUCH!

 
wendy
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
22 Oct 2015 11:05:15 AM PST
I have been diagnosed with celiacs 16 years ago. My villi were totally flat. I went on gluten free diet and felt much better. Just realized past 2 years was taking a protein supplement that had gluten. Well now, my liver enzymes are 3 times elevated and I have mild inflammation. I am checking every single thing that goes in my mouth now. I am not overweight. but they said I have a fatty liver.




Rate this article and leave a comment:
Rating: * Poor Excellent
Your Name *: Email (private) *: