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Celiac.com 12/09/2013 - People with celiac disease commonly suffer malabsorption, weight loss and vitamin/mineral-deficiencies. A team of researchers recently set out to assess the nutritional and vitamin/mineral status of current “early diagnosed” untreated adult celiac disease patients in the Netherlands. The research team included Nicolette J. Wierdsma, Marian A. E. van Bokhorst-de van der Schueren, Marijke Berkenpas, Chris J. J. Mulder, and Ad A. van Bodegraven. They are affiliated with the Department of Nutrition and Dietetics and the Department of Gastroenterology at Celiac Centre Amsterdam in VU University Medical Centre in Amsterdam, The Netherlands. Researchers assessed 80 newly diagnosed adult celiac patients, averaging 42.8 years old, ± 15.1 years. They compared vitamin concentrations for those patients against a sample of 24 healthy Dutch subjects. Before prescribing gluten-free diets to the patients, the researchers assessed nutritional status and serum concentrations of folic acid, vitamin A, B6, B12, and (25-hydroxy) D, zinc, haemoglobin (Hb) and ferritin. Almost nine out of ten celiac patients (87%) measured at least one value below the lowest normal reference levels. Specifically, for vitamin A, 7.5% of patients showed deficient levels, for vitamin B6 14.5%, folic acid 20%, and vitamin B12 19%. Likewise, 67% of celiac patients showed zinc deficiency, 46% showed decreased iron storage, and 32% had anaemia. Overall, 17% of celiac patients were malnourished, with more than 10% experiencing undesired weight loss, 22% of the women underweight (Body Mass Index (BMI) < 18.5), and 29% of the patients overweight (BMI > 25). Vitamin deficiencies were nearly non-existent in healthy control subjects, though they did show some vitamin B12 deficiency. Interestingly, vitamin and or mineral deficiencies were not associated with greater histological intestinal damage or with adverse nutritional status. This study shows that vitamin and/or mineral deficiencies are still common in newly “early diagnosed” celiac patients, even as rates of obesity upon initial celiac diagnosis continue to rise. Thorough nutritional monitoring is likely warranted for establishing a dietary baseline and maintaining nutritional levels during the course of celiac disease treatment. Source: Nutrients 2013, 5(10), 3975-3992; doi:10.3390/nu5103975 -
How Early Can Celiac Disease Be Diagnosed?
Dr. Rodney Ford M.D. posted an article in Summer 2007 Issue
This article appeared in the Summer 2007 edition of Celiac.com's Scott-Free Newsletter. This question, “how early can you diagnose celiac disease?” is a major concern for both parents and paediatricians. This is because, like many diseases, celiac disease comes on slowly. This means that it can take a long time to make the diagnosis. Celiac disease can develop slowly? Yes, celiac disease can develop very slowly. The symptoms can be subtle. It is a progressive disease. When you are first born, you cannot have celiac disease as you have never been exposed to gluten. However, if you have the right genetic make up (that is you have the celiac gene) and the right environmental circumstances (eating gluten and getting gut inflammation), then celiac disease can develop. Finding tissue damage Celiac disease is a condition that is recognised when you get damage to your small bowel tissue. This damage is triggered by gluten. The standard way to detect this tissue damage is by taking a gut biopsy of the small bowel skin (also called the mucosa). This is done by the technique of upper endoscopy whilst under an anaesthetic. Tiny fragments of gut tissue are snipped off with a pair of forceps. This tissue is then sent to a pathology lab. The lab people (histologists) look down their microscopes at this tissue sample. They are looking for the gut damage called villous atrophy which is characteristic of disease. Early antibody changes – IgG-gliadin Importantly, long before the tissue becomes obviously damaged by gluten, your body can begin to react to the gluten in your diet. An early sign of a gluten immune reaction is that your body produces antibodies to the gluten in your diet. This can be seen in a blood test that looks for an antibody called the IgG-gliadin antibody (also known as anti-gliadin-antibody). Also the IgA-gliadin antibody can develop at this time. Even in these early stages of gluten reactions (before the development of any gut damage of celiac disease), you or your child can be feeling unwell. Many of the symptoms of celiac disease can be recognized in these early stages. This is before the tissue damage can be seen by the histologist. The blood test to look for tissue damage is called the tissue transglutaminase antibody (abbreviated as tTG). Early bowel damage cannot be seen The next thing to happen is that the tissue in the small bowel gets slightly injured but not enough to be identified by the histologist. However, such damage can be shown by an electron microscope. This early damage can also be detected by the presence of the tTG antibody. Usually, when the tTG blood test goes up, then this is an indication to do the endoscopy and look for any tissue damage. However, early in the progression of celiac disease, this damage may not show up by conventional methods. This means that the small bowel biopsy and the histology results are good for confirming celiac disease, but they cannot rule it out. To act or to wait? In my experience, I have seen a number of children develop celiac disease whilst I have watched and waited. While we doctors wait and see if the gut will become progressively damaged, these children will continue to experience their gut symptoms and they may not be growing so well. We doctors are waiting to make a certain diagnosis of celiac disease. We want to repeat their blood tests and do another endoscopy. Is this reasonable? Experience has changed my mind. I have come to the conclusion that this is not an appropriate way to deal with these children. Currently, most medical specialists are adamant. They will not make a diagnosis of celiac disease until the histologist can confirm the typical tissue damage. How long can you wait? I have given up the “wait and see” approach. I act. I carefully scrutinize the symptoms and the blood test results - the gluten antibodies (IgG-gliadin) and tissue damage antibody (tTG) levels. I may organise an endoscopy test. If these findings suggest the development of celiac disease, then I make a pre-emptive diagnosis of “early celiac disease”, often before the gut gets badly damaged. I give these children a trial of a gluten-free diet – I see what their clinical response is. Pleasingly, most get completely better! If they get better, then they want to stay gluten-free. The problem is that the diagnosis of celiac disease currently hinges on the abnormal appearance of the small bowel. This damage can take years to develop. The main argument against my approach is that if you do not have a “definite” diagnosis of celiac disease, then you cannot advise a gluten-free diet for life. In my opinion, the decision to go on a gluten-free diet is not a black and white choice. For children, I give them the option of a gluten-free diet early in their disease. Let them feel well. Let them grow properly. Later, as an adult, they can challenge their diagnosis and have a formal gluten challenge when they understand the issues. Conclusion – my approach As you can see, it is difficult to say how early you can diagnose celiac disease. It is my practice to carefully assess children regarding their symptoms, their antibody levels, their genetic status and their endoscopy results (if appropriate). I do not think it is logical to leave children with significant symptoms waiting for the small bowel damage to eventually occur. Indeed, I think that these long delays in treatment are inhumane. Postponement of a gluten-free diet will cause these children to suffer ongoing symptoms. Worse, they can have growth failure, from which they may not recover. My approach is to put these children on a gluten-free diet early. I watch and see if thy have a clinical response: if they get better. The evidence shows that you cannot rely entirely on the small bowel biopsy for your diagnosis of celiac disease. These children can have a gluten challenge later in their lives. The onset of celiac disease is progressive. Why wait until the bitter end before going gluten-free? The onset of celiac disease is progressive. Why wait until the bitter end before going gluten-free? You can find out a lot more from my webpage: www.doctorgluten.com -
Celiac.com 07/19/2008 - When I was 6 years old, I lived in Dallas, Texas, and I had a best friend named Judy. It was at her house that I first ate a bagel. I fell in love with its chewy, crusty texture. I didn’t know much at that age, but I knew that I loved eating those bagels – I couldn’t get enough. I also knew, from a very young age, that something was wrong with me. Something that they would one day discover and name after me. I had stomachaches all the time. I can’t remember a time when my stomach didn’t hurt at least a little bit. “You were so healthy when you were young,” my mother is fond of saying. Painfully shy and uncomplaining–yes. Healthy, no. We were just blissfully unaware of what lay in wait for future doctors to discover. In high school, I was anemic, and experienced several bouts of tachycardia that were written off to anxiety. And then after I was married, I twice struggled with infertility. Later, the “stomachaches” returned and worsened and doctors removed my gallbladder thinking that stones were to blame and then my uterus thinking it might be hormones causing my symptoms. Along the way, in trying to diagnose me, doctors discovered insulin-dependent diabetes, low thyroid and high cholesterol. I also have bipolar disorder. I take a combination of 13 medications a day for my health maintenance, and I’ve been to the hospital at least 18 times in the past year. But still, I felt that they hadn’t hit upon that one thing that was really wrong, that was causing my stomach to hurt so badly. Then, two years ago, I had added “severe bone pain” to my ever-growing list of symptoms and went to see a rheumatologist. He refused to believe it was a simple case of arthritis and tested me for malnutrition. I had no Vitamin D in my blood – a tell tale sign that something was wrong with my gut. Next came the antibody test and then a biopsy that proved that the tiny villi that lined my intestines were indeed “flattened.” We had a diagnosis after only 10 years of actively seeking one. I had celiac disease, an auto-immune disease where you can’t digest wheat or gluten, the wheat protein. “What? I can’t eat bread? I can’t have bagels?” I was sure I would starve to death when I heard that this removal of all glutens from the diet was the only treatment for the disease whereby the lining of a person’s intestines is badly damaged. If left untreated, it can lead to things like malnutrition, brain ataxia, osteopenia, and eventually a cancer called lymphoma. More specifically, what was happening was the lining of my intestines was shriveling, shrinking in reaction to the gluten in the bread or other products made with wheat. The damaged intestines repair themselves with the removal of gluten from the diet, but it must be strictly adhered to for life. Even the smallest taste of wheat or gluten would immediately return my villi that line the intestines to a flattened mass. At first I was afraid to eat anything. All day long, gluten loomed at me from dark corners. At night I dreamt of bagels and pizza. The problem is that gluten is hidden in many foods. Obviously it is in bread, bagels, pizza, pasta, most fried foods (all wheat flour-based products) but it also is in many processed foods like canned soups and salad dressings, ice creams, foods made with caramel color, malt, barley, rye, HVP, spelt, and the list goes on. It also means that I must use separate utensils to butter my gluten-free bread, separate pots and pans to cook my food and separate colanders to drain my corn or rice-based pastas. Even certain toothpastes and lipsticks are suspect. To have celiac disease means that you no longer can rely on that convenience factor of ordering take-out or eating fast-food. It means that you have to be prepared each and every time you eat, bringing with you sauces and dressings, buns and breads. You learn, too, that part of the reason bread is bread is because of the gluten. It is what holds it together and gives it its chewy texture. Breads made from rice and corn and the like are mealy and fall apart. They must be kept frozen and then toasted, and even then are just not the same. Eating out is risky. You must carefully research a restaurant before you go, finding out if they offer any gluten-free foods and usually speaking to the manager and the chef. I usually go to one of two restaurants that I know to have gluten-free menus. Even then you risk cross-contamination or accidents. The other day, I found a crouton in the bottom of my salad bowl. This can be disastrous to a person with celiac disease. It signaled all things dark and dastardly, and sure enough, later that night, it started: a gnawing, a clawing from the inside out. Something akin to severe hunger but more raw than that. Then it settled in the pit of my stomach and churned into a piece of broken glass. A reaction to gluten can feel as though every time you move you’re stabbed by a shard of glass until you’re bleeding from the inside out. This can result in severe projectile vomiting and other gastrointestinal symptoms that are mostly unmentionable. The Other Celiacs There are those people who have celiac who are really upbeat about it all – perky even. There are also celiac patients who have mild or no symptoms of the disease. I’m not one of them. They will tell you that we are among the lucky ones, the ones who know they have the illness, the ones who have been diagnosed and now have all this healthy good-for-you food at our disposal. They laud the nature of the illness whereby the only treatment is dietary and does not require surgery or other invasive means. But if you ask me, I would much rather have one surgical procedure that would “cure” me and be able to digest wheat the rest of my life than to have to make such a lifestyle overhaul. To have celiac is to be socially awkward at best and to be in constant pain at worst. It is not something one wishes to have. The worst part is no one (other than another celiac sufferer) understands, from the family member who wants you to try “just one bite” of her homemade streusel to the restaurateur who mistakes white flour for a non-gluten product because it has been “bleached” to the medical professional who thinks it’s a simple allergy rather than an auto-immune disease. The lack of awareness of celiac is astounding given that nearly two million Americans are said to suffer from it. The problem is it is widely under-diagnosed. One in 133 Americans are said to have celiac disease but only one in 2000 knows they have it. Lack of Awareness When we are little kids, we are taught that doctors are there to help us. I have very few doctors who actually help me. I had one doctor -- an endocrinologist – say that they would figure it all out at the autopsy. To have a chronic illness is to realize that there is no cure. You will not be cured. You will learn to live with some amount of pain and illness. This lack of awareness of the disease and its effects even among medical professionals is unnerving. I’ve shown up at hospitals vomiting blood, writhing in pain with blood pressure so low I should be crawling yet I’ve been told nothing was wrong with me, that all of my blood work was “perfectly normal” and therefore I should just go home and rest. Of course if they had checked my gluten antibodies, they would have found that they were twice as high as was normal, pointing to an accidental ingestion of gluten, which sent my body into a tailspin of auto-immune hell. Yet there is no “auto-immunologist” to which I can turn for help. What’s even more frustrating is that celiac disease is not a rare illness – it is estimated that it could even affect three million Americans! Lessons Learned I dream of bagels that I can digest that taste good. I dream of hospitals where treatment comes without scrutiny and care comes with respect. And I dream of a place I can go and be welcomed where “everybody knows the name” of celiac sprue. A place where people understand that it is not a simple thing to just“eliminate gluten” from one’s diet as gluten – the wheat protein – isin many, many foods, some obvious, yes, but many hidden, too. In the meantime, I’m learning to eat to live and not the other way around. And I’m enjoying the simple things in life – the friends who will drive far enough to find a gluten-free restaurant; the same friends who won’t devour the bread basket in front of you! -
Celiac.com 05/28/2013 - Is an intestinal biopsy always necessary to diagnose celiac disease, or can diagnosis be made without biopsy? To answer that question, a team of researchers recently set out to compare celiac disease–specific antibody tests to determine if they could replace jejunal biopsy in patients with a high pretest probability of celiac disease. The research team included Annemarie Bürgin-Wolff, Buser Mauro, and Hadziselimovic Faruk. They are variously affiliated with the Institute for Celiac Disease in Liestal, Switzerland, and Statistik Dr. M. Buser, Riehen, Switzerland. Their retrospective study included blood test data from 149 patients with celiac disease, along with 119 controls. All patients underwent intestinal biopsy, and all samples were analyzed for IgA and IgG antibodies against native gliadin (ngli) and deamidated gliadin peptides (dpgli), as well as for IgA antibodies against tissue transglutaminase and endomysium. They found that tests for dpgli were superior to ngli for IgG antibody determination: 68% vs. 92% specificity and 79% vs. 85% sensitivity for ngli and dpgli, respectively. Predictive values were also higher for dpgli than for ngli; positive (76% vs. 93%) and negative (72% vs. 83%). Regarding IgA gliadin antibody determination, sensitivity improved from 61% to 78% with dpgli, while specificity and positive predictive value remained at 97% (P less than 0.00001). A combination of four tests (IgA anti-dpgli, IgG anti-dpgli, IgA anti- tissue transglutaminase, and IgA anti-endomysium) yielded positive and negative predictive values of 99% and 100%, respectively and a likelihood ratio positive of 86 with a likelihood ratio negative of 0.00. Omitting the endomysium antibody determination still yielded positive and negative predictive values of 99% and 98%, respectively and a likelihood ratio positive of 87 with a likelihood ratio negative of 0.01. Conclusion: Antibody tests for dpgli yielded superior results compared with ngli. A combination of three or four antibody tests including IgA anti-tissue transglutaminase and/or IgA anti- endomysium enabled reliable diagnosis or exclusion of celiac disease without intestinal biopsy in 78 percent of patients. This two-step method of performing jejunal biopsy only in patients with discordant antibody results (22%) would catch all patients except those with no celiac-specific antibodies; who would then be caught through biopsy. Source: BMC Gastroenterol. 2013;13(19) -
Celiac.com 03/21/2017 - More Italians are being diagnosed with celiac disease than ever before. According to the Report to the Parliament from the Ministry of Health, 182,858 Italians were diagnosed with celiac disease, compared with less than 172,000 in 2014; an increase of about 6%. Celiac diagnosis are much more common in women, with 129,225 cases, compared with men, who saw 53,633 cases. The regions of Campania and Lombardy saw the highest numbers, with 2268, and 1,867 cases, respectively. Lombardy has the most cases, with 17.7% of the total, or 32,408 citizens with celiac disease, with Campania and Lazio ranking second at 9.7% of the total, or 17,777 cases. In Italy, celiac disease sufferers receive specific gluten-free products free of charge. Costs for that program rose accordingly, from €227,753,844 in 2014 to €241,773,048 in 2015. Source: West-info.eu -
Celiac.com 06/08/2010 - At first, a diagnosis of celiac disease can be daunting, to say the least, and for some people, even devastating. It means giving up some of your favorite foods—pastas, breads, pizzas, cakes, cookies, and pretzels—at least as you used to know them. So why should you consider yourself lucky if you’ve been diagnosed with celiac disease? Because you’ve been given the key to better health. Okay, so I’ve never been good at saving the punch line for the end. It’s true, though, you DO have the key to better health: A gluten-free diet. Still not feeling like you just won the lottery? Well, consider this: Celiac disease is the most common genetic disease of humankind—yet for every person diagnosed with celiac disease, 140 go undiagnosed. They may still suffer from gastrointestinal distress, headaches, depression, joint pain, or other symptoms. Many are told they have “irritable bowel syndrome,” fibromyalgia, or chronic fatigue syndrome—and that there’s nothing that can be done for them. “Go forth and live your life in misery,” is, in essence, their lifetime sentence. You, however, know that simply a dietary modification (no, I didn’t say a “simple dietary modification,” and you’re probably acutely aware of the difference) is the key to better health. The gluten-free diet is a medical necessity for our family, but it is also a healthy way of life. Sometimes I used to think, “If only I could not have to worry about making tonight’s meal gluten-free, I’d make…” What? What would I make?!? Would I make macaroni and cheese from a box? Ick! Would I make spaghetti? So what! The gluten-free stuff is just as good these days. Would I make a quick trip to Kentucky Fried Chicken or a pizza place? Oh, now there’s a healthy meal (well okay, every now and then maybe!). People often tell me they find the cost of the gluten-free diet to be prohibitive. True, the cost of a loaf of gluten-free bread could buy you an entire meal in some restaurants…but think of this: What if your condition required prescription medication? The cost of even some of the cheapest medications could buy (at least) a loaf of gluten-free bread each day. We are fortunate to live in a time when celiac awareness is at an all-time high. Gluten-free foods are delicious and readily available (even the “PollyDanna” in me couldn’t have said that with so much conviction 13 years ago when we first began this lifestyle!). These days, customer service reps on the other end of the toll-free lines at food companies actually know what we’re talking about when we ask if their products are gluten-free. Excellent cookbooks and resource books abound, as do support groups and seminars. Yes, if you’ve been diagnosed with celiac disease, you can consider yourself lucky for a number of reasons. If you’ve read my books or heard me speak, you know my mantra, so sing it with me now: “Deal with it…don’t dwell on it!” Before long, you too will realize how very lucky you are.
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Celiac.com 01/09/2017 - Some researchers have criticized the usefulness of the 7 level Marsh-Oberhuber classification of mucosal damage in patients with celiac disease. Even though assessing duodenal biopsies with dissecting microscopy is a somewhat crude method, it can provide useful information in cases of obvious villous atrophy. For the past 15 years, one research team has analyzed duodenal biopsies with dissecting microscopy before sending them to the pathology department for histology. Their feeling is that, if dissecting microscopy and traditional histology were comparable, the grading of the histological lesion would be unnecessary, or even pointless, for proper diagnosis of most enteropathies. That research team recently set out to settle that question. The team included F Biagi, C Vattiato, M Burrone, A Schiepatti, S Agazzi, G Maiorano, O Luinetti, C Alvisi, C Klersy, and GR Corazza. They are variously affiliated with the First Department of Internal Medicine, the Biometry and Statistics, the Department of Pathology at University of Pavia, Fondazione IRCCS Policlinico San Matteo, Pavia, Italy; and with the Department of Translational Medicine, Università del Piemonte Orientale, Novara, Italy. They conducted a retrospective analysis of the clinical notes of all 2,075 patients undergoing duodenal biopsy between September 1999 and June 2015. They collected and statistically compared the results of duodenal mucosal evaluation with both dissecting microscopy and traditional histology. Their results, using κ statistics, showed a substantial agreement of the two methods (κ statistics 0.78). Sensitivity of dissecting microscopy for detection of severe villous atrophy was 85.1% (95% CI 81.2% to 88.5%) and specificity was 95% (95% CI 93.8% to 96%). Although dissecting microscopy is no substitute for traditional histology, these results suggest that most celiac disease-related and other flat enteropathies can be sufficiently diagnosed without grading villous atrophy. Source: J Clin Pathol. 2016 Dec;69(12):1051-1054. doi: 10.1136/jclinpath-2016-203711. Epub 2016 May 4. -
Celiac.com 07/08/2016 - If their symptoms don't get worse, many patients diagnosed with celiac disease as children do not pursue follow-up care as adults, according to data presented at Digestive Disease Week 2016. There's been some really good stuff coming out of Digestive Disease Week 2016 in San Diego. One example is a talk given by Norelle Reilly, MD, from the division of pediatric gastroenterology and the Celiac Disease Center at Columbia University Medical Center in New York City. According to data presented by Dr. Reilly many patients diagnosed with celiac disease as children do not pursue follow-up gastroenterology care as adults, unless symptoms worsen. Reilly and colleagues sent a 33-question survey to nearly 8,000 recipients via the medical center's proprietary distribution list and received 98 qualified responses. According to Reilly, 37% of respondents said they were not seeking ongoing care for celiac disease. These respondents reported an average of 2 to 5 years, and sometimes as many as 10 years, between doctor visits for their celiac disease. Compare that with an average of six months between doctor visits for people who were getting regular care. Large numbers of patients diagnosed with celiac disease in childhood do not seek follow-up care as adults, especially those diagnosed earlier in childhood, who may have fewer ongoing symptoms, Reilly said. She ended her talk by asking "providers caring for children and adolescents with celiac disease [to] educate early as to the importance of ongoing care, emphasize the importance of follow-up and the reasons for follow-up, particularly with patients who lack symptoms and may not seek care otherwise and to provide a referral, and formally transition the patient to adult care to improve compliance." Reference: Reilly N, et al. Abstract #35. Presented at: Digestive Disease Week; May 21-24, 2016; San Diego. Read more at Helio.com.
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The following guidelines were received from the Oct. 1993 CSA/USA National Conference in Buffalo, NY: 1) You can claim only the EXTRA COST of the gluten-free product over what you would pay for the similar item at a grocery store. For example, if wheat flour costs $0.89 per 5 lbs. and rice flour is $3.25 per 5 lbs., the DIFFERENCE of $2.36 is tax deductible. You may also claim mileage expense for the extra trip to the health food store and postal costs on gluten-free products ordered by mail. 2) The cost of xanthan gum (methylcellulose, etc.) used in gluten-free home baked goods is completely different than anything used in an ordinary recipe, so in the opinion of the IRS, the total cost of this item can be claimed. 3) Save all cash register tapes, receipts, and canceled checks to substantiate your gluten-free purchases. You will need to prepare a list of grocery store prices to arrive at the differences in costs. You need not submit it with your return, but do retain it. 4) Attach a letter from your doctor to your tax return. This letter should state that you have Celiac Sprue disease and must adhere to a total gluten-free diet for life. 5) Under MEDICAL DEDUCTIONS list as Extra cost of a gluten-free diet the total amount of your extra expenses. You do not need to itemize these expenses. Suggestions: 1) You may want to write the Citations (as given below) on your tax return. Always keep a copy of your doctors letter for your own records. 2) Your IRS office may refer you to Publication 17 and tell you these deductions are not permissible. IRS representatives have ruled otherwise and this is applicable throughout the US Refer them to the following Citations: Revenue Ruling 55-261 Cohen 38 TC 387 Revenue Ruling 76-80, 67 TC 481 Flemming TC MEMO 1980 583 Van Kalb TC MEMO 1978 366 -
Celiac.com 02/18/2008 - A greater awareness of celiac disease, coupled with better and more accurate tests for celiac disease have helped to bring about a situation where most people currently diagnosed with celiac disease show no symptoms at the time of their diagnosis. Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. This finding has caused doctors to call for an adjustment to screening procedures for high-risk populations. A team of researchers led by Dr. Grzegorz Telega recently surveyed medical records of people diagnosed with celiac disease at Children's Hospital of Wisconsin from 1986 to 2003. The statistics showed that the number of celiac disease diagnosis rose from a single case in 1986 to 93 cases in 2003. The total number of cases during that period was 143. Before the mid-1990’s, more than 85% of children diagnosed with celiac disease were under 10 years old, with the average age being just over 5 years old. After 1995, less than 50% of children diagnosed with celiac disease were under 10 years old, and the average age at diagnosis had risen to about 8.5 years of age. Children diagnosed before the age of 3 years old usually complained of classic celiac-associated gastrointestinal symptoms, such as malnutrition, diarrhea, abdominal pain, and bloating, while children diagnosed at older ages had less pronounced symptoms. One of the important conclusions made by the research group is that the possibility of celiac disease should be strongly considered in people with other autoimmune disorders, even if those people do not show gastrointestinal symptoms traditionally associated with celiac disease. The research team called upon primary care doctors to adopt a practice of celiac screening for all people with elevated risk factors, including people with a family history of celiac disease, people with Addison’s disease Down Syndrome type 1 diabetes, thyroiditis, Turner syndrome, and type 1 diabetes. The team also called for screening of patients with short stature, iron deficiency anemia, and high transaminase levels. Arch Pediatr Adolesc Med 2008;162:164-168.
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How is celiac disease diagnosed?
Scott Adams posted an article in Frequently Asked Questions About Celiac Disease
The traditional approach to diagnosing celiac disease is a three-step process: Perform a biopsy of the lining of the small intestine. This is a surprisingly easy procedure which takes only a few minutes, although small children are usually sedated first, which adds to the cost and complexity of the biopsy. If the villi are damaged (flattened or atrophied mucosa), go to step 2. Place the patient on a gluten-free diet for six months or longer and then perform another biopsy. If the villi are healed, go to step 3. Put gluten back in the diet for six months or longer, and then perform a third biopsy. If the villi are again damaged, then the diagnosis is complete. At this point, the patient goes on a gluten-free diet for life. Many doctors now feel that step number three is unnecessary, and some feel that even the second biopsy may be unnecessary. Part of the reason for this change in thinking is the development of three useful antibody blood tests: endomysial, reticulin (IgA), and gliadin (IgG and IgA). If the patient has been eating gluten regularly and all three tests come back positive, there is a very high chance that the patient has celiac disease. If all three tests come back negative, then it is very likely that the patient does not have celiac disease. Mixed results, which often occur, are inconclusive. All of the laboratory tests that can be performed are strongly affected by a gluten-free diet. Tests will return negatives if the individual has been on a gluten-free diet for some time, and there is much debate about the length of time a patient must return to a gluten-laden diet before being tested. It probably depends on many factors: the level of damage that was done before starting a gluten-free diet, the length of time the person has been gluten-free, the amount of healing that has occurred, and the sensitivity of the individual to gluten. A tentative diagnosis of celiac sprue is usually offered if the patients symptoms clear up after some time on a gluten-free diet. This is often followed by a "challenge" in which one of the offending grains (usually wheat) is eaten to see if the symptoms reoccur. However, this approach is much less desirable than having a firm diagnosis from a combination of antibody tests and one or more biopsies. Because a gluten-free diet precludes accurate testing, if you suspect celiac disease, it is advisable to have diagnostic tests performed before starting a gluten-free diet. Some physicians will accept positive antibody tests, one biopsy, and improvement on a gluten-free diet as sufficient for diagnosing celiac disease. Many other doctors prefer to perform a second biopsy, feeling that if it shows normal villi after a period of eating gluten-free then the diagnosis is confirmed. There are still some doctors who prefer the three-step approach mentioned above, though most view this as unnecessary. -
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Celiac.com 04/04/2012 - After numerous studies over several decades showing higher mortality rates in people with celiac disease, including a comprehensive study in 2009, published in Gastroenterology, news of a recent UK study, finding mortality rates for people with untreated celiac disease that are similar to the general population, has raised a few eyebrows. With diverse study data fueling differing opinions, questions regarding long-term mortality in people with celiac disease will likely take time to resolve. In the meantime, a review of scientific literature brought up this small 2007 study. In it, a research team compared long-term mortality rates in people diagnosed with celiac disease as children with rates for those diagnosed as adults. They wanted to find out how those rates might differ and if the rates might be related to the disease and the length of gluten exposure before diagnosis. To find an answer, the team gathered data for 285 children and 340 adults diagnosed with celiac disease. They continued to gather data for each until the end of 2004, excepting those who failed to follow up for other reasons. From their data, the team calculated standardized mortality ratios (SMRs) for the period starting five years after patient diagnosis. They found that adults diagnosed with celiac disease had 38% higher mortality rates (SMR 1.38, 95% CI 1.16-1.63). Children on the other hand, faced rates three-times higher (SMR 3.32, 95% CI 2.05-5.07). This excess mortality in children was mainly due to higher rates of death from accidents, suicide, and violence (seven deaths, SMR 3.22, 95% CI 1.29-6.63), cancer (five deaths, SMR 3.72, 95% CI 1.21-8.67), and cerebrovascular disease (two deaths, SMR 10.03, 95% CI 1.21-36.00). The 2007 study found that adults with celiac disease face a modest increase in mortality rates over the long-term, but that mortality rates for those diagnosed with celiac disease as children were three-times higher starting five years after diagnosis. The team proposed that the increased mortality in children from external causes may be due to behavioral changes associated with living with life-long celiac disease and its treatment. Stay tuned for further developments regarding mortality rates in people with celaic disease. Source: The American Journal of Gastroenterology. 2007;102(4):864-870. -
Celiac.com 07/12/2012 - A research team affiliated with the Department of Endocrinology and Nutrition at Complejo Hospitalario Mancha Centro in Alcázar de San Juan, Spain, recently set out to study how bone mineral density correlates with duodenal Marsh stage in newly diagnosed adult celiac patients. The team made up of A. García-Manzanares, J.M. Tenias, and A.J. Lucendo. For their study, the researchers wanted to estimate the rates of low bone mineral density (BMD) in adult celiac patients and to better understand nutritional and metabolic factors associated with osteoporosis and osteopenia. To do so, they recruited patients a consecutive group of 40 adults (36 females/4 males), between the ages of 18 and 68, who were newly diagnosed with celiac disease. Average patient age was 44.25 years. For each patient, the researchers conducted bone density scans on the left hip and lumbar spine using dual-energy X-ray absorptiometry. They also assessed nutritional parameters and conducted a hormone study to exclude secondary low BMD. Overall, at diagnosis 45% of patients showed low BMD at both hip and lumbar spine. Risk of hip fracture was generally low, but climbed into the mild range for patients with villous atrophy (p = 0.011). The team also found that major fracture risk varied according to Marsh stage (p = 0.015). They found significant differences in nutritional status between patients with and without duodenal villous atrophy. Marsh III stage patients showed substantially reduced body mass index and blood levels of pre-albumin, iron, vitamin D and folic acid. The team found no differences found in blood hormone levels between Marsh stages or BMDs. They found that the amount of bone mass loss in the lumbar spine was directly tied to Marsh stage. They found a parallel association between BMD and Marsh stage in the hip, but this was not statistically significant. Overall, results showed that duodenal villous atrophy, through malabsorption, was the main factor for low BMD in patients with adult-onset celiac disease. Source: Scand J Gastroenterol. 2012 May 16.
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Celiac.com 09/13/2010 - What's happening in with the immune system when a child is first diagnosed with celiac disease? What happens when they are treated with a gluten-free diet? Some recent studies have indicated that both the adaptive and the innate immune system play roles in celiac disease. However, until now, doctors haven't known much about the immune phenotype of children with celiac disease and how that phenotype might by affected by a gluten-free diet. To move toward a better understanding of these issues, a team of researchers recently studied immune phenotype in children with either newly diagnosed celiac disease, or celiac disease treated with a gluten-free diet. The research team included Áron Cseh, Barna Vásárhelyi, Balázs Szalay, Kriszta Molnár, Dorottya Nagy-Szakál, András Treszl, Ádám Vannay, András Arató, Tivadar Tulassay and Gábor Veres. The are affiliated with the First Department of Pediatrics in the Research Group for Pediatrics and Nephrology at Semmelweis University and Hungarian Academy of Sciences, in Budapest, Hungary. For their study, the team described the status of major players within the adaptive and innate immune system in peripheral blood of children with newly diagnosed celiac disease. They then looked to see how the phenotype might have changed once the symptoms improved following treatment with a gluten-free diet. The team drew peripheral blood samples from ten children with biopsy-proven celiac disease at the time of diagnosis and again after once clinical symptoms subsided with treatment by gluten-free diet. They also drew blood samples from a control group of 15 children who suffered from functional abdominal pain. They measured the prevalence of cells of adaptive and innate immunity by means of labeled antibodies against surface markers and intracellular FoxP3 using a flow cytometer. They found that patients with celiac disease had lower T helper, Th1 and natural killer (NK), NKT and invariant NKT cell prevalence and with higher prevalence of activated CD4+ cells, myeloid dendritic cells (DC) and Toll-like receptor (TLR) 2 and TLR-4 positive DCs and monocytes compared to controls. Most of these deviations returned to normal, once symptoms subsided with gluten-free diet treatment. However, prevalence of NK and NKT cell, DC and TLR-2 expressing DCs and monocytes remained abnormal. The immune phenotype in childhood celiac disease indicates that both adaptive and innate immune systems are playing a role in celiac disease. Treatment with a gluten-free diet reverses immune abnormalities, but the mechanics of the reversal likely varies among cell types. Source: Dig Dis Sci. 2010 Aug 5. DOI: 10.1007/s10620-010-1363-6 -
Celiac.com 12/16/2009 - Research has suggested potential autoimmune involvement of the pituitary gland in patients with celiac disease, but such activity has only been shown in only a few patients on gluten-free diet. A team of researchers recently set out to assess the prevalence and clinical meaning of anti-pituitary antibodies (APA) in children and adolescents with the newly diagnosed celiac disease. The research team was made up of M. Delvecchio, A. De Bellis, R. Francavilla, V. Rutigliano, B. Predieri, F. Indrio, D. De Venuto, A. A. Sinisi, A. Bizzarro, A. Bellastella, L. Iughetti, and L. Cavallo. They are affiliated with the Unità Operativa Complessa di Pediatria, IRCCS Casa Sollievo della Sofferenza, San Giovanni Rotondo (FG), Italy. The team set out to assess the prevalence and clinical meaning of anti-pituitary antibodies (APA) in children and adolescents with the newly diagnosed celiac disease. For their cross-sectional study, the team recruited atonal of 119 patients with celiac disease from the inpatient clinic of University Hospital. Test subjects ranged from 0.9 to 15.8 years in age. Clinicians recorded their height, weight, and body mass index (BMI), and assayed their insulin-like growth factor-1 (IGF-1) and APA. Researchers determined APA in 98 sex- and age-matched control subjects. They found APA in 50 of those subjects (42.0%), 15 of whom showed high titer (30%), 35 showed low titer (70%), and 2 control subjects showed low titer (2%) (P<0.001). More patients with negative than with low titer (P=0.02) or high titer APA (P=0.03) showed higher IGF-1. High-titer APA patients showed more reduced height than did negative ones (P<0.01). Researchers positively correlated height with IGF-1 (P<0.01) and negatively with chronological age (P=0.001). They positively correlated IGF-1 with BMI (P<0.001). For height prediction the regression analysis showed the rank order 1 for chronological age and 2 for IGF-1. This results of this study demonstrate a substantial prevalence of positive APA in newly diagnosed celiac disease patients. High APA titers are associated with reduced height impairment, likely mediated by a reduction of IGF-1, thus indicating that autoimmune pituitary process may induce a linear-growth impairment. Source: Am J Gastroenterol advance online publication, 10 November 2009; doi:10.1038/ajg.2009.642.
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Celiac.com 10/12/2009 - It has been 9 months since my celiac diagnosis. It seems hard for me to believe that until January 23, 2009 I had never even heard of celiac disease. I have made up for lost time in the past few months. Hopefully, my story will help others who are newly diagnosed with celiac disease to hang on to hope and be encouraged that things are going to get better – much better as they move into a gluten free lifestyle. In 1971 I had a panic attack. I have never been the same since that day. I won’t go into the details of it because most people know what a panic attack is like. So I had a complete physical which included blood panels for the first time. When I got the results I found out I had an extremely elevated alkaline phosphatase level (400), normal is 80-130. My first thought was, “What the heck is alkaline phosphatase?” The doctor was alarmed. He ran more tests and suggested a liver biopsy. He thought I might have liver cancer. No liver disease was found. From that panic attack until my celiac diagnosis I was always anxious about my liver. I also fought the fear of more panic attacks. Nothing was ever conclusive. It just hung out there for over 35 years. Every time I changed doctors and had my blood tested I went through the same series of tests and concerns. Nothing definitive was ever diagnosed. Finally, my doctor told me my elevated counts were “normal for me.” Fast forward to the year 2003. Without any reason I lost 20 lbs. over an 8 week period. I thought it was kind of cool to be “skinny”. I had always being kind of “doughy.” When I had a physical I found my alk-phos was now over 400. I was anemic and more fatigued than ever. My doctor wanted me to have a colonoscopy and an endoscopy. He said he was more worried about the anemia than the high alkaline phosphate. I had a colonoscopy, but refused the endoscopy on grounds that I couldn’t bear the thought of having a tube put down my esophagus. What a mistake! I could have gotten this diagnosis 6 years earlier. The colonoscopy revealed no disease. When I did finally have an endoscopy in 2009 I was totally sedated and the test took about 4 minutes. It was the easiest test I’ve ever had. My doctor thought I was depressed and put me on anti-depressants. After adjusting to the meds I think I felt a little better, but deep down I knew something major was going on. I figured if I were the President I would be sent to the Mayo Clinic for a couple of weeks and they would find out what was plaguing me. I thought my problem could be found only by the best doctors in the world and it would be at great expense – more than I could afford, so I decided to just live the best I could. Before my diagnosis I was not absorbing many, if any, nutrients. At 6’2” I was a gaunt 156 lbs. I had rapid heart beat, shortness of breath, fatigue, anemia, terrible muscle cramps all the intestinal issues known to man. Numerous blood counts were way off. The 98 lb. weakling at the beach could have kicked sand in my face all day long. My wife told me she couldn’t look at me anymore. It’s hard to look at someone who is suffering from serious malnutrition. Everything I ate went right through me. I didn’t think about it at the time, but as I reflect back on it I know I would have died by now if I hadn’t gotten off the gluten. Now I can see signs of celiac since childhood. I was delayed in reaching puberty until I was a junior in high school. I also had fears that we not reasonable. There were some things going on neurologically for sure. I began feeling better within a few days after being diagnosed and going gluten free last January. My weight began going up, and I just knew the anemia would go away and so would the high alk-phos. 6 weeks after diagnosis (March 2009) I went in for a blood test. I was convinced the bloodwork would show normal levels in every category. I was proud and giddy. I couldn’t wait to get the results. Surprise, surprise! The blood count for anemia had not changed and the alkaline phosphatase was over 600! What the heck was going on! At least I felt better. I stumbled across a couple of articles on the internet about high alkaline phosphatase in celiacs and possible reasons. Many celiacs have low calcium and vitamin D, and in some cases it causes high alk-phos. Without getting too technical it seems that the alk-phos plays a role in bone growth and can go into overdrive when calcium and Vitamin D are extremely low. The solution for us may be in taking lots of calcium and Vitamin D supplements. I know this is controversial, but I decided to go directly to the source of vitamin D (the Sun) for 15 minutes of sunlight each day. I also have been taking a great gluten free calcium/magnesium supplement for the past 6 months. Last week I went in for more bloodwork. I know I continue to feel better all of the time, but after my last blood work I’m a little nervous about the actual results. The nurse called me the day after the blood was drawn and told me my count for anemia is now in the low normal range and the alkaline phosphatase is 300! It had dropped 300 points in 6 months. I think I’m on to something. I feel like I’m on the right track and will continue the supplements. I haven’t mentioned how low my cholesterol was in January. The LDL was 33 and the HDL was 18. The total cholesterol was 61. The doctor said it was the lowest cholesterol he had ever seen! Now it has gone up to a total of 140! Something is definitely working! I think just being gluten free for 9 months has been better than anything else, but I continue to be hopeful about the calcium and vitamin D supplements. I have gained 50 healthy lbs. since discovering I’m a full blown, card carrying celiac. I’m working out every other day with weights and I figure of the 50 extra lbs. about 25 of it is muscle and the rest is fat. Oh well. I do look better. My wife can look at me again and I can even look at myself once in a while. I had no idea what it was like to feel normal. Good things can be found through every struggle. Were it not for these trials I would not have found my faith and learned to trust God. I wouldn’t change that for anything. Everything happens for a reason. I do wonder what I may have done with my life had I been gluten free from birth. I don’t spend too much time thinking about it, though, since I can do nothing to change it. I consider it miraculous that I could have been in education as a teacher and administrator for 32 years before I hit the wall in 2005. I’m 60 years old now. I really look forward to the future. I feel like my best years are ahead of me.
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Celiac.com 02/20/2009 - Doctors are recommending screening for bone density in children with newly diagnosed celiac disease. A team of researchers recently set out to evaluate children with celiac disease for bone deficits in spine (SP) and whole body (WB) bone mineral content (BMC) at time of diagnosis, and to evaluate whether such deficits are associated with deviations in growth and body composition. Additionally, the team sought to assess the effect of histological grade on BMC. The research team was made up of doctors Muralidhar Jatla, Zemel, S. Babette, Patricia Bierly, and Ritu Verma associated with the Department of Pediatrics, Division of Gastroenterology and Nutrition, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia Their study was supported by the Nutrition Center at the Children's Hospital of Philadelphia and the Clinical and Translational Research Center from Clinical and Translational Science Award UL1-RR0241340. Their findings were reported in a recent issue of Gastroenterology. The team conducted a retrospective study that compared the results of children who had undergone a dual energy x-ray absorptiometry scan at the time of their celiac disease diagnosis against a healthy reference sample matched for age, race and geographic region in the United States. All celiac disease diagnosis occurred between October 1, 2003, and June 15, 2006. To evaluate differences between the celiac disease and the control group, the research team expressed SP and WB BMC as sex-specific z scores relative to age and relative to height. They performed Pearson correlation, t tests, and analysis of variance to assess predictors of BMC. They evaluated a total of forty-four children with celiac disease and compared them with 338 healthy controls. The celiac children averaged 10.6 ± 3.4 years of age, were 77% female, and 96% white. The children with celiac disease were shorter than their healthy counterparts of similar age, sex and region. The children with celiac disease also showed significantly lower SP and WB BMC for age z scores compared with controls. The children with celiac showed significant deficits in WB BMC, even once the figures were adjusted for height. Low SP and WB BMC were associated with advanced histological grade in celiac disease. Low body mass index was associated with low WB BMC in celiac disease. The research team concluded that screening for low bone mineral content may benefit children who are newly diagnosed with celiac disease, as those with low body mass index and those with advanced histological damage (Marsh grade IIIc) face an elevated risk of osteopenia. Journal of Pediatric Gastroenterology and Nutrition:Volume 48(2)February 2009p 175-180
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Celiac.com 12/30/2004 - A new study on celiac disease was presented at the 69th Annual Scientific Meeting of the American College of Gastroenterology by S. Devi Rampertab, MD, from the North Shore Long Island Jewish Health System in New York. The study looked retroactively at 590 patients with a celiac diagnosis confirmed by biopsy from 1952 to 2004. They found that since 1980 the patient age of diagnosis has increased from 30.5 to 42, and the number of cases diagnosed after significant diarrhea decreased from 91% to 37%—and the time period from the development of the disease to its detection decreased from 11 years (before 1980) to four years now. New blood screening techniques are credited for the earlier detection of the disease, and the resulting decrease in the percentage of patients diagnosed after the development of a malignancy—which decreased from nearly 22% before 1980 to just over 5% now. The positive trends noted in this study further support the use of widespread serum screening to detect celiac disease, as it can prevent many of the complications caused by the disease. One thing that isnt clear, however, is why the age of diagnosis is getting higher—even though Italian studies have determined through mass-screenings that celiac disease is present in at least 1% of all children. Since that number is consistent with the number of people in the USA with the disease, it stands to reason that celiac disease may in fact be a childhood disease, and if so, the 42 year-old average age of diagnosis in the USA would indicate a massive failure of our health care system to detect the disease. More studies need to be done to determine the number of children in the USA with celiac disease. Since most celiacs have little or no symptoms—Celiac.com believes that the only reasonable way to get them properly diagnosed and treated would be to have widespread serological screenings of the general population. The disease affects at least 1% of the population in the USA, and the benefits for such screenings would far outweigh their cost.
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Lancet Nov 2001 Volume 358, Number 9292 1504-08 03 Celiac.com 11/14/2001 - A recent study published in The Lancet by Dr. David S Sanders et al. of the Gastroenterology and Liver Unit, Royal Hallamshire Hospital, Sheffield, UK, explored the number of people who were diagnosed with irritable bowel syndrome but actually had celiac disease. The case-control study was done at a university hospital in which 300 consecutive new irritable bowel syndrome patients who met the Rome II criteria for their diagnosis were compared against 300 healthy age and sex-matched controls. Both groups were investigated for celiac disease by analysis of their serum IgA antigliadin, IgG antigliadin, and endomysial antibodies (EMA). Patients and controls with positive antibody results were offered duodenal biopsy to confirm the possibility of celiac disease. An amazing 66 patients with irritable bowel syndrome tested positive for the antibodies, and 14 of them or 4.6% had active celiac disease as compared with 2 or 0.66% of the non-IBS matched controls. In other words there is a sevenfold increase over the normal population in the number of people with IBS who have celiac disease. All of the patients with celiac disease in the IBS group were therefore misdiagnosed. The study did not indicate how many of the other 52 patients who had positive antibody results would eventually develop celiac disease, but this would be an interesting follow-up study. Celiac.com believes that the 4.6% with celiac disease will grow higher over time. Conclusion: All patients with irritable bowel syndrome should be screened celiac disease.
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The following was sent to me from Rio de Janeiro by Dr. José Cesar da Fonseca Junqueira. If you have any questions you can e-mail him at: cjunqueira@ax.apc.org.br Rio de Janeiro - 05/27/96 - Celiac Disease. A Comparative study of two periods. Junqueira JC, Calçado AC, Percope S. 1996 Federal University of Rio de Janeiro Martagão Gesteira - Institute of Pediatrics. The aim of this study was to compare cases of celiac disease diagnosed in outpatients with malabsortion cases. The study was conducted at the Pediatric Gastroenterology Service of the Pediatric Institute Martagão Gesteira at the Federal University of Rio de Janeiro Brazil. It was done in two phases: from 1975 -1984 and from 1985 - 1994 (group 1, N=31 and group 2, N=21). Patients were selected based on the results of jejunal biopsy (group IV) and the favorable reaction to a gluten free diet. Data from the first interview (age, sex, nutritional status and prevalent symptoms) were analyzed. The number of biopsies and the level of compliance with the diet were also observed. The data collected was processed in a computer using EPI INFO 6.03 (January 1996)as software. The frequency of celiac disease over the studied years was compared with international data. There were no significant differences between the two groups in our study. However, the cases free of gastroenterological symptoms (atypical celiac disease) were not observed. The average age difference between the groups (group um X=24,39 months; group 2 X=32,03) was not statistically significant. A bigger study must be carried out to prove this theory. The analysis of nutritional status of the groups reveals the existence of severely undernourished patients. The number of biopsies and the level of compliance with diet were similar in the two groups. The decrease in the number of cases as well the increase in the age of patients were observed in group 2. These phenomena were probably due to a delayed exposure to gluten and to the expansion of the period of breast feeding. Other causes should be analyzed in a bigger research program. The conclusion of this study shows that there has been no change in the clinical features of the disease and points to the need for serological screening so that the entire spectrum of the disease can be established. Both groups had malabsorption and were very under-nourished (over 45%). One patient was diagnosed as having Diabetes Mellitus several years after and an other one is under investigation for poliarthrites. Serological investigation is not available in our country. The final conclusion is that we must have such serological screening to know the real spectrum of the disease. Adult celiac disease is not diagnosed in our country, mainly because the adult doctors do not know the full spectrum of celiac disease. Ill be presenting this work as a thesis at the University on May 29, 1996.
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