Irritable Bowel Syndrome and Digestive Health Support Forum banner
1 - 9 of 9 Posts

·
Registered
Joined
·
247 Posts
Discussion Starter · #1 ·
This recent study in Canada points out the alarming frequency with which doctors misdiagnose celiac (easily treatable by removing gluten from the diet) with IBS. Note that 29% of those studied had been misdiagnosed with IBS and that the average number of YEARS before they were correctly diagnosed with celiac was 11.7 years. Celiac is a food allergy to gluten, mitigated by IgA type antibodies. Blood testing by an experienced physician can determine if you have celiac.1: Dig Dis Sci. 2007 Apr;52(4):1087-95. Epub 2007 Feb 22.Department of Medicine, Ottawa Health Research Institute, University of Ottawa, Ottawa, Ontario, and Queen's University, Kingston, Ontario, Canada. The purpose of this study was to characterize the diagnostic process, frequency of associated disorders, family history, and impact of a gluten-free diet in individuals with celiac disease. All members of the Canadian Celiac Association (n=5240) were surveyed with a questionnaire. Respondents included 2681 adults with biopsy-proven celiac disease. The mean age was 56 years. Most common presenting symptoms included abdominal pain (83%), diarrhea (76%), and weight loss (69%). The mean delay in diagnosis was 11.7 years. Diagnoses made prior to celiac disease included anemia (40%), stress (31%), and irritable bowel syndrome (29%). Osteoporosis was common. Prior to diagnosis, 27% of respondents consulted three or more doctors about their symptoms. Delays in diagnosis of celiac disease remain a problem. Associated medical conditions occur frequently. More accurate food labeling is needed. Improved awareness of celiac disease and greater use of serological screening tests may result in earlier diagnosis and reduced risk of associated conditions. PMID: 17318390 [PubMed - in process]
 

·
Registered
Joined
·
23,983 Posts
FYI"Symptoms of these diseases--celiac disease, gastroesophageal reflux disease (GERD), food allergies, lactose intolerance, and eosinophilic gastroenteritis--can sometimes coexist or be confused with a functional GI disorder. Depending upon the history and symptom presentation, these diseases may need to be considered when making a diagnosis. Significantly, they all have distinguishing characteristics that can differentiate them from functional GI disorders. Celiac disease (sometimes known as celiac sprue or gluten intolerance) is a genetic, or hereditary, disease. The ingestion of gluten (found in wheat, barley, rye, and possibly oats) results in an immune response that causes damage to the small intestines and inhibits absorption of certain important nutrients. The prevalence of celiac disease has not been well defined in the U.S., and the disorder has been considered an uncommon disease. The prevalence in the U.S. is reported to range from 1:250 to 1:1,500. Studies in several European countries indicate prevalence as high as 1 in 250 to 300 of the general population. Celiac disease is rarely diagnosed in African or Asian populations. [Results of a study by Fasano et.al., published in Arch Intern Med. 2003 Feb 10, suggests a prevalence of 1 in 133 in the U.S. general population.]In the U.S., there may be a general lack of knowledge about the disease among many physicians. Some of the symptoms are similar to, but distinguishable from, those found in other disorders such as IBS, Crohn's disease, ulcerative colitis, diverticulosis, intestinal infections, chronic fatigue syndrome, and depression. Symptoms of celiac disease include, but are not limited to, one or more of the following: recurrent abdominal bloating and pain chronic diarrhea pale and foul-smelling stool, gas weight loss missed menstrual periods irritability fatigue anemia delayed growth painful skin rash pale sores inside the mouth tingling numbness in the legs discoloration of the teeth seizures bone pain joint pain muscle cramps The disease can also be present without apparent symptoms, but can still lead to complications.Celiac disease can be diagnosed with a blood test to measure the level of antibodies to gluten. A biopsy of the small intestine is generally the most effective way to diagnose celiac disease. A biopsy may also be done, if it appears that celiac disease is present, to look for tissue damage. http://www.aboutibs.org/Publications/Celiac.html
 

·
Registered
Joined
·
10,398 Posts
quote:Diagnoses made prior to celiac disease included anemia (40%), stress (31%), and irritable bowel syndrome (29%)
This is puzzling. But adding all the diagnosis given, it's 153%! It's not clear what or where the overlap is here. Were some people misdiagnosed multiple times consecutively or simultaneously? It appears that most subjects had gastrointestinal symptoms and a diagnosis of anemia excludes IBS, so it's not clear how many people were in that category of IBS and anemia. They didn't breakdown which type of physician made which diagnosis, but it appears that in many cases, GI doctors were not involved.Another interesting thing is that of those who had serological testing, very few had a positive test if the test had been prior to 1998, as if testing labs didn't learn how the test correctly until that time. It's not clear how many serological testing overall (the false negative rate).
 

·
Registered
Joined
·
247 Posts
Discussion Starter · #4 ·
The important thing to take away from this study is that people who have IBS symptoms have celiac disease but it takes on average 11.7 YEARS to get proper diagnosis. That is an average of 11.7 years of suffering that could have been completely avoided and an extra 11.7 years of damage to the intestine that may or may not ever heal completely.It should be noted that the biochemistry of celiac disease was only finally identified in 1997, so it is not surprising that lab testing didn't get to a reasonable level of sophistication until more recently.Many doctors are still ignorant about celiac disease. There are often symptoms beyond the defining symptoms of IBS, which should serve as a red flag and result in celiac testing, However there are several factors that one should keep in mind. First, some celiac patients never exhibit 'red flag' symptoms and only exhibit IBS symptoms. Second, the normal progression of celiac starts with mild IBS symptoms which increase over time and often take years to develop the 'red flag' symptoms because they mostly result from the damage to the intestines that often occurs slowly, over years.The bottom line is that it makes no sense to not get tested for celiac by a physician who is educated and experienced with it if you have IBS symptoms. The only reason to not get tested is if you can't afford the test (which is pretty cheap and usually covered by insurance).
 

·
Registered
Joined
·
23,983 Posts
What?"The important thing to take away from this study is that people who have IBS symptoms have celiac disease"False!!!IBS patients have a specific "cluster" of symptoms from IBS, minus red flags.Celiac disease patients have bowel symptoms from Celiac.Again they are not the same disorders.and""Symptoms of these diseases--celiac disease, gastroesophageal reflux disease (GERD), food allergies, lactose intolerance, and eosinophilic gastroenteritis--can sometimes coexist or be confused with a functional GI disorder. Depending upon the history and symptom presentation, these diseases may need to be considered when making a diagnosis. Significantly, they all have distinguishing characteristics that can differentiate them from functional GI disorders. "There is of course no problem asking your doctor about celiac or any other condition that can MIMICK some bowel symptoms of IBS or if you think you have red flag symptoms. Especially if you have other family members with it.Irritable Bowel Syndrome: How far do you go in the Workup?"What about celiac disease? This disorder should always be considered in evaluating IBS, because the diarrhea and abdominal discomfort due to proximal small intestinal villous atrophy and inflammation will specifically respond to a gluten-free diet. Therefore, making a diagnosis early may be cost-effective. The prevalence of celiac disease in the US is reported to range from 1:250 to 1:1500 (17). However, this is influenced by the method of assessment as well as the prior probability of the disorder being present in the population under study. With regard to the method of assessment, in a study set in Olmstead County (18), the reported prevalence was 1:4,600, and the cases were identified by clinical and pathological criteria. In contrast, when serological methods are used, the prevalence is at 1:250 or even higher (19), and in one recent study the prevalence for women was 1:125 compared to males at 1:250 (20). So, when clinically suspected, primary care physicians and specialists may now obtain anti-gliadin and anti-endomysial IgA antibody serologies. These are reasonably effective screening tests, given that the sensitivities and positive predictive values range from 90% - 100% (17). However, in populations where the prevalence of this disorder is low, many positive serological tests will be false positives. Therefore, because the gold standard of diagnosis requires upper endoscopy with duodenal biopsy, endoscopy is almost always needed for confirmation of the diagnosis. But can we be satisfied that these studies are enough to exclude celiac disease? In this issue of Gastroenterology, Wahnschaffe et al.(21) raise concerns about the possibility of missing a diagnosis of latent or potential celiac disease among persons thought to have IBS. Patients with latent or potential celiac disease have a genetic susceptibility for the disease, but do not have the histopathological findings (i.e., no villous atrophy or notable mucosal inflammation) when exposed to a gluten diet, so a small bowel biopsy will not make this diagnosis. In contrast to potential celiac disease, latent disease is characterized by mucosal changes that occurred at some point in time and recovered on a gluten-free diet. The authors propose that both these groups may still respond clinically to a gluten free diet. This creative study attempted to identify patients with latent or potential celiac disease (i.e., who presumably had negative serological screens for celiac disease) in a sample of 102 IBS patients. They evaluated a variety of serological, intestinal and genetic markers, and compared the findings to control groups with treated and untreated celiac disease, latent celiac disease and normal controls. They found two surrogate markers: a) the expression of HLA-DQ2 alleles DQA1*050/DQB1*0201, a genetic marker for celiac disease, and
an increased intestinal IgA titer against tissue-transglutaminase and/or gliadin were elevated in the small sample of patients with latent celiac disease. Notably, the assessment of intestinal (rather than serological) antibodies is a unique aspect of this study; it is a diagnostic method for celiac sprue that is not commonly done. Then, when evaluating the IBS patients, they found that 35% had expression of the HLA-DQ2 genotype, and this subgroup of IBS patients had significantly increased IgA antibodies against the celiac disease-associated antigens gliadin and/or tissue-transglutaminase in the duodenal aspirate, as well as increased intra-epithielial lymphocytes (also characteristic of celiac disease) when compared to IBS patients without expression of the HLA-DQ2 genotype. Furthermore, 26 IBS patients were put on a gluten-free diet for 6 months. The 13 patients who were positive for the HLA-DQ2 alleles and for the intestinal celiac disease-associated antibodies had a significant reduction in stool frequency and intestinal IgA antibody titers for the celiac disease-associated antigens. This improvement did not occur in the remaining IBS patients on gluten free diet who were negative for HLA-DQ2 gene expression. They conclude that the presence of these two markers in patients with IBS may identify a subgroup with latent or potential celiac disease that may respond to dietary restriction. These findings must be put into a clinical perspective. First, the authors identified the IBS patients as those who had a "…variable combination of abnormal bowel habits in the absence of endoscopic, histopathological, laboratory and microbiological abnormalities." However, these criteria are not sufficient for diagnosing IBS. We do not know how many of these patients actually had abdominal pain, the key symptom criterion for a diagnosis of IBS. Clinically, patients with diarrhea and no pain are considered separate from IBS ("functional diarrhea"), and they define a group where celiac disease is more likely than patients with typical IBS having abdominal pain. In fact, if many of these patients did not have pain, and therefore did not fulfill criteria for IBS, then the findings of the study and its implications for IBS may be quite different. Second, the sample sizes for some of the cells were small. Only 5 patients had latent celiac disease, and the improvement in response to gluten restriction occurred in a sample of 13 patients with IBS who were HLA-DQ2 positive. It will also be valuable to conduct this study in a controlled fashion using a large group of patients with IBS not having celiac disease markers in order to determine the placebo response rate to a gluten free diet. Even the reduction in serologies with a gluten free diet may not provide complete evidence for a clinical response, since dietary restriction of gluten might reduce the antigenic challenge to the immune system, leading to a serological response that is unrelated to the changes in stool frequency. Despite these limitations, this study has raised some important concerns regarding our sense of "security" in accepting normal histopathology to exclude celiac disease in patients having symptoms of IBS, and has opened the door to pursuing these issues in larger clinical trials. "http://www.romecriteria.org/reading1.html
 

·
Registered
Joined
·
10,398 Posts
quote:hat people who have IBS symptoms have celiac disease
False Celiac does not meet Rome criteria. There are going to be organic indications such as weight loss and anemia. That study clearly indicated these patients didn't meet Rome criteria and therefore did not have "IBS symptoms".
quote:t should be noted that the biochemistry of celiac disease was only finally identified in 1997
Nope, goes back decades. The only thing that changed in 97/98 was discovery and addtion of transglutamase antibody to the testing suite, but the others worked if they were all done and done right. More likely, the discovery of this other antibody made testing more popular.
quote:Many doctors are still ignorant about celiac disease
That may be true for family doctors, but they should be sending patients to GI doctors.
 

·
Registered
Joined
·
12 Posts
I have a question. My Celiac panel came back positive, however after having an Endoscopy and several biopsies, they came back normal and negative for Celiac. I am still trying to avoid gluten and wheat as much as possible and I am gradually feeling a little bit better. Is this totally backwards or normal?
 

·
Registered
Joined
·
34,955 Posts
The blood tests have a fairly high false positive rate. Which is why they are used for screening only, and not the final diagnosis. Just like with a mammogram they don't remove the breast to cure the cancer immediately because a lot of positives on the mammogram turn out to be something that isn't cancer.http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsumis one paper where they report the high false positive rate.For a lot of IBSers the gluten containing foods also have starches in them that may be bothersome, so you can feel better cutting back on them even if you don't have celiac.UNC is doing a study on the Atkins diet in IBSers because it does seem for some people a diet low in starch of any kind works. The study is nice because then we can have some data to back up the observation.K.
 

·
Registered
Joined
·
20 Posts
This is very interesting to me. I had a few blood tests done. My general doctors blood tests came back as a maybe for celiac. My GI doctors tests came back as a negative.I had an allergy test done, and gluten/wheat came up as an allergy. Not severe, but existing. I'm currently on a gluten-free diet (well it's more like a nothing but rice and chicken diet), and on days where I feel better, I have felt a lot better. On days where I feel bad, I still feel bad, but not end of the world bad. Maybe I should go and get more tests done for celiacs.
 
1 - 9 of 9 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top