In September 2009, an important conference took place in Chicago. Takeda sponsored the American Gastroenterological Association (AGA) Education Conference. The goal of the conference was for celiac experts to share information about celiac disease with other doctors, though as the conference name implies, most were gastroenterologists. We all know that the first line of defense for celiac patients is the primary care doctor. The good news is that the many problems and challenges of diagnosing patients with celiac was covered in detail during the two day event. Admitting there is a problem is the first step to correcting the situation – hopefully.
As one would expect, celiac experts like Dr. Peter H. Green and Dr. Joseph Murray were speakers at the conference. However, the most exciting news for me was the fact that Shelley Case was also a featured speaker. Shelley was the only dietitian invited to present at the event – hardly surprising since she is considered the foremost authority on the gluten-free diet in North America. Her topic was “The Gluten-free Diet: What Every Physician Needs to Know”. Almost every doctor I met during my own celiac journey (and most I’ve met since my diagnosis) do not believe that people can eat great food on the gluten-free diet and therefore, most patients won’t follow the diet even with a biopsy diagnosis of celiac. Therefore, some doctors seem to try and avoid diagnosing patients with celiac disease. Thankfully, when Shelley was finished speaking, many doctors scrambled to pick up her book.
Shelley agreed to speak to me with me about this conference even though she is a very busy lady. She is always going somewhere to speak, work with the Canadian Celiac Association and constantly updating her best selling book The Gluten-Free Diet: A Comprehensive Resource. Shelly went over many details of the conference with me recently, but first she shared some interesting news about a similarity between the U.S. and Canada. Most of us know there is a problem getting people properly diagnosed with celiac disease in this country. Shelley reports that Canada doesn’t seem to be doing on so well on that front either. The last survey they did regarding length of time for a celiac diagnosis ws 11.7 years. That was several years ago and they are now analyzing the data from the last such study. Results are preliminary but so far it’s not looking like there has been improvement to shorten that time substantially. At the Chicago conference, there were several issues discussed regarding why many doctors are not giving their patients the proper care and service when it comes to celiac disease. To keep this post a quasi acceptable length, we’re just going to talk bout the blood tests for celiac disease.
Problems plague the celiac blood tests and doctors not ordering the complete celiac panel is just the start of it. Another drawback is that some patients may have a false negative on the IgA tTg or IgA EMA test, due to them having an IgA deficiency. IgA deficiency is much more common among people with celiac than in the general population. Sounds confusing, right? Yes, that’s another problem. If a doctor doesn’t understand the many nuances involved with the celiac blood tests, they’re going to send many patients away with a clean bill of health. At least they’re going to tell the patient that they do not have celiac. To learn more about celiac genetic testing (different than celiac blood tests), read the New York Times take on the topic, as well as the genetic testing article from Shelley’s website.
I’ve met countless people that tested negative on the celiac blood tests but they tried the gluten-free diet anyway. When the diet resolved a host of health issues, they stuck with it. Those people will never know if they have celiac (or non celiac gluten sensitivity) because they will never go back to eating gluten to find out. Please forget anything you’ve heard about how much gluten is enough to consume – and how long it must be consumed – in order to be properly tested for celiac disease. Some experts now agree that they do not know the exact answer to either question. The estimates of several pieces of bread a day might be correct, but the length of time this must be consumed for accurate test results is not actually agreed upon. We’ll cover the host of problems with the biopsy test next week, including the fact that it might not be the gold standard that doctors have considered it for many years.
OK – now for the fun part! Leave a comment below if you would like to win a copy of Shelley Case’s “must have” book The Gluten-Free Diet: A Comprehensive Resource Guide. Shelley has generously offered to donate FIVE of her books for our lucky readers. The deadline for comments is Sunday, February 14th. Winners will be announced on this post on Monday, February 15th. Good luck!
UPDATE 2-15-10: Congrats to the following winners of Shelley Case’s book! They are Julia Lynch, Ina, Angie Adams, Will and Elisabeth Mills.
Special thanks to Shelley Case for sponsoring this give-away and most especially for taking the time to speak with me about the conference in Chicago!
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I am a Kinesiologist working with many Clients who have Celiac or intolerence to Gluten. This would be a great resource.
The problems understood now about the so-called “gold standard” biopsy are more numerous than previously believed by many. This Wednesday (2-17) we’ll talk about the many things Shelley told me were discussed about the topic. Even I was shocked.
I am gluten intolerant, diagnosed at age 36 after years of feeling not really well, and being told I was the picture of health. I was the first person in my family to uncover this problem… and we now know that 2 of my 3 kids, my mom, one brother and a niece also are gluten intolerant. I know several people, just in the past few years, who experienced a false negative blood test result and an improperly conducted biopsy resulting in a false negative. This seemingly willful misunderstanding on the part of the American medical community makes me want to shout the truth from the rooftops… or go door to door distributing work like Shelly Case’s or Dr. Fasano’s. As it is I try to inform and educate those whom I can, when I have the opportunity and a receptive audience. Thanks for the great information!
For a detailed treatment of negative testing gluten syndrome, check out http://www.theglutensyndrome.net. for research, diagrams, and explanations. Also for warnings on the real risks of gluten challenges and cheating. Thanks for Dr. Aristo Vojdani, PHD, Immunologist, Immunosciences Laboratories, CA for this information, which fits the gluten syndrome community like a glove.
In short, here are published reasons the testing today is inadequate.
1. Gluten breaks into many more “pieces” (peptides) than just gliadin, and there are different forms of gliadin which are not tested today. In particular, gluteomorphins, ( gliadinomorphins, gliadorphins) are opiate like peptides of incompletely digested gluten that cause a great deal of neurological interference ifn ot other issues also, and they are not tested by the standard tests today. We need to test a larger variety of antibodies. Unfortunately there are more antibodies to test than there are tests developed, so a negative antibody test is never conclusive. One doctor, Thomas O’Bryan tested over 370 of his patients for gliadin, tTG, gluteomorphins, and later added gluten and wheat, all IgA, IgG, and IgM, and 77 % of them came up with a positive when more antibodies were checked. Significant, even factoring in some false positives. Gluteomorphin peptide testing is only available in the urinary peptides panel from Genova Diagnostics at this time.
2. We need to test IgM antibodies. Sometimes the IgM antibodies do not convert if activation induced cytidine deaminase is not functioning, for instance.
3. tTG is not always elevated unless there is severe villi damage.
4. Gluten antibodies have been shown to damage many innocent tissues all over the body by molecular mimicry. It doesn’t always damage the villi. Usually it damages OTHER tissues, particularly brain and nerve tissue, including the NERVES in the organs and various body parts. If the nerves are damaged it is thought that they may be silenced so damage occurs silently until significant injury produces organ failure, etc.
Villi damage was merely discovered first because it could be observed, so it was assumed to be a gold standard of dx. A negative biopsy merely means the gluten did not not pick the villi to be injured first. Very possibly there may be serious damage somewhere else in the body. In these common situations, the villi may EVENTUALLY become injured as inflammation and dysfunction increases and damage spreads.
Furthermore, it is not well understood that occasionally going gluten free causes a temporary withdrawal that can be quite difficult, including depression, anxiety, exhaustion, and other symptoms. This may be related to changes in blood flow in the brain, or withdrawal of gluteomorphins/antibodies from receptor sites in the cells. Patients go through symptoms that mimic drug withdrawal and may need to be supported and reassured that others have come through this phenomenon. This may last several days up to a couple of weeks or ??? This is often seen in autistic children also when they are taken off gluten. See pages on adverse reactions to going gluten free or gluten challenges.
http://glutensensitivity.net/Adverse_reactions.htm
http://glutensensitivity.net/cases.htm#ztop
Seesawing back and forth on and off gluten has produced similar severe reactions and from anecdotal experience is not advised. http://www.theglutensyndrome.net discusses these types of reactions with links and references. Call for referrals and support if you are in a difficult situation or to report such a reaction. I am collecting experiences to post. 630-628-9126
I had 3 celiac tests done. the first one said I have the gene but no other problems. I was having healh issues but I don’t know if they are related to celiac. I had another test done –different lab and doctor–he said not celiac. I had 3rd test done–different lab ad doctor—it says I have the gene but he said not celic. I had my thyroid removed shortly after the first test. I feel a lot better and AM following a gluten free diet. I am now (never was before) slightly anemic. I have no other celiac related symptoms. Now what??? Just curious what you thought. I am seeing a doctor who also has celiac. I would sure like to get to the bottom of this. This is the short story. I can provide more details if needeed.
thanks….Patty
I had 3 celiac tests done. the first one said I have the gene but no other problems. I was having healh issues but I don’t know if they are related to celiac. I had another test done –different lab and doctor–he said not celiac. I had 3rd test done–different lab and doctor—it says I have the gene but he said not celic. I had my thyroid removed shortly after the first test. I feel a lot better and AM following a gluten free diet. I am now (never was before) slightly anemic. I have no other celiac related symptoms. Now what??? Just curious what you thought. I am seeing a doctor who also has celiac. I would sure like to get to the bottom of this. This is the short story. I can provide more details if needeed.
thanks….Patty
I will be picking up a copy of this book! I am hoping that doctors become more educated in the future. I had to fight for a diagnosis for my daughter who did not have the symptoms that he doctor thought she needed to have to have celiac. My persistence lead to her final diagnosis via endoscopy.
I look forward to reading the book, but I think I will give my copy to my regular physician, who completely dismissed my symptoms and observations, until my TSH continued to decline after I remained gluten-free! I am glad to see the issue of a possible false negative on the IgA tTg finally being addressed with physicians. My physician was satisfied with a negative test, despite my IgA deficiency. Shelly is a valuable resource for those of us who have had to fight to be heard! Thanks Shelly!!!
I’m glad to see that more attention is being given to those who have regained their health by eating gluten-free, but without a celiac diagnosis. Thank you SO much for adamantly pushing this issue. I myself had the blood panel done, showed no celiacs, and therefore couldn’t get a good recommendation to have the endoscopy done b/c there was “no use.” However I personally had a stool test done thru EnteroLab and found that I’m highly gluten intolerant and are genetically predisposed. I changed my diet as a result and have seen a huge increase in my health and many problems have subsided. But I continue to get the “side glace” from medical professionals when I express that I must eat gluten-free but am non-celiac. I look forward to more PROFESSIONALS knowing what I’ve come to find out on my own.
I have fibromyalgia and have found that being gluten free really helps me. When I eat gluten products my muscles actually feel like they are on fire. I can hardly move and get around. I had a chiropractor who suggested that I try going gluten free for a couple of weeks to see if it would help. I was amazed how much better I felt without gluten. I still have fibro and sore muscles but I have much less pain and am not “down” as much as I was before. If I eat gluten within 4 hours I can feel it in the muscles. My regular doctor and rheumatologist tell me that it is in my head. They should feel the pain that I feel. Seems so many doctors just don’t get it. I don’t know if I am unusual in this but giving gluten up has sure helped me function better than I have for a number of years.
I had several negative blood tests and a negative biopsy. A Functional Medicine doctor then did stool testing that showed positive and followed it up with a DNA test for gluten. The DNA test showed that I had non-Celiac Gluten sensitivity and a double copy of it showing that both of my parents had it and that both of my daughters have it. I am now having trouble convincing some family members that have obvious symptoms, but have had negative blood tests, that they need the DNA testing. I even have one cousin who is very into organic foods and non traditional medicine. She has told me that she has had a wheat allergy and has followed a wheat free diet for over 20 years, but can eat barley, oats and rye. I can’t convince her that she is intolerant of all of those grains but may not show dietary symptoms. She has a lot of the conditions shown on the list of gluten related diseases! Trying to convince people (and doctors) that this isn’t just an intestinal issue is really a job!
Thank you for this article. And as Dr. Stephen Wangen notes, Celiac Disease is only a small subset of the folks that are gluten-intolerant overall (www.ibstreatmentcenter.com). Those of us without the DQ2 and DQ8 genes (such as I am, with two DQ3 genes) have substantial challenges too. Besides gluten, there’s casein, soy, eggs, bananas, etc. to be concerned with. And we won’t test positive for CD no matter how severe our intolerances are. The medical community still has a long way to go. JMW
My husband and 2 daughters have all been diagnosed with celiac disease.
My younger son went for a first degree relative blood screen with his younger sister at the UM Celiac Research program in Baltimore. Although my daughter was positive, my son tested negative. Years later, he decided that he would try a gluten free diet and has felt much better since then. Even the experts might not have all the answers re: screening.
I have been diagnosed with Celiac disease for some 20 years. What I find silly is the insistence of people with Celiac or glutten insensitivity to try and “reproduce” baked goods. Just quit eating such things and other grains as well. Humans did not evolve eating grains or milk or beans. Eliminate them all and find a much better lifestyle and a very much healthier diet.While you’re at it eliminate all the “industrial” liquid oils and their hydrogenated kin. Remember if it has a long “ingredients list it means it is an experiment and YOU are the lab rat. I just had my annual blood workup and it came back with results that most would find amazingly good. Grain filled diets are NOT normal and Celiacs are a natural response to such. More than 50% of people have sensitivity to gluten and EVERYONE is sensitive to WGA (wheat Germ Agglutinin). Stop, just stop and feel better and live more naturally.
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