Celiac Disease Insights from Shelley Case – Part 1

In September 2009, a very 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. The good news is that the problems and challenges of diagnosing patients with celiac was discussed. Even though the actual news about why the diagnosis rates are not where they should be, admitting there is a problem is a good first step in correcting the situation.
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, though this is 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. When Shelley was finished speaking, doctors scrambled to pick up her book. There is hope.
When Shelley agreed to do an interview with me about this conference, I was so excited. I knew she could explain things in ways that people like me could understand, even though she can understand a lot of the medical jargon that I can not. Shelley is a busy lady and always going somewhere to speak, working with the Canadian Celiac Association and constantly updating her best selling book The Gluten-Free Diet: A Comprehensive Resource. Even so, she was kind enough to take the time to talk to me in depth about the Chicago conference recently.
Most of us know there is a problem getting people properly diagnosed with celiac disease in this country. It now seems that the mainstream medical community is going to find that out as well. 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 an acceptable length, we’re just going to talk bout the blood tests for celiac disease.
Problems plaque the celiac blood tests and doctors not ordering the complete celiac panel(which leads to some people having false negatives on the test) is just the start of it. The full panel is required to be of value when testing for celiac. Another drawback is that some patients with celiac test negative on certain parts of the test, due to them having a positive marker on another part of the test. 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. Well, maybe not that exactly, but they’re certainly going to tell the patient that they do not have celiac, period.
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. Theose people will never know if they have celiac or gluten intolerance because they will never go back to eating gluten to find out.
Oh, and 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. The experts now agree that they do not know the answer to either question – how much gluten must be consumed, for how long, to ensure accurate test results.
We’ll get a host of problems with the biopsy test next week, including the fact that it might not be the gold standard that so many have considered 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 7th. Winners will be announced on this post on Monday, February 8th. Good luck!
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!

Gluten-Free7smIn 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!


64 thoughts on “Celiac Disease Insights from Shelley Case – Part 1”

  1. I would love to win this book for my wife who was recently diagnosed. How perfect that the give away is on Valentines day. Please help me give my Valentine the gift of a lifetime for her life time.

  2. I have Shelley’s book and have found it to be a tremendous resource. I’m a huge fan. I have a friend who is just beginning a gluten-free diet and this would be a wonderful gift for her. I highly recommend this book for everyone with Celiac Disease and gluten intolerance.
    Shelly Stuart, RN

  3. Thanks for the great article. It is not surprising that the medical community is behind in knowledge/support of Celiac Disease. I also know several people who suffer terribly from “classic symptoms” of Celiac or gluten intolerance, but because the blood tests have come back negative, they have been told it’s okay to continue the consumption of gluten, no follow up tests necessary. I am also VERY concerned that biopsy results may not be easily interpreted. I am looking forward to your next installment regarding this problem and perhaps some information about how best to confirm a diagnosis of Celiac.

  4. My daughter (7 yrs) and I both have Celiac. It’s been just over a year and we still have some struggles. We would be delighted to have a book written by such a well respected dietitian as Shelley Case.

    Thank you,

    Julia Lynch

  5. I would love to read her book! Being newly diagnosed I still have a lot to learn about eating truly g-free!
    Thanks for the article!

  6. I’m not competing for the book because I have my own copy, well highlighted and underlined. If you don’t win the book, you should buy it. It answers every question about nutrition that you might have if you are a celiac.

  7. Shelley’s book sounds very interesting and one that I would like to add to my celiac/gluten intolerance library here at home. I understand very well how difficult it is to get doctors to listen to you. On my own, when my own PCP/allopathic doctor wouldn’t listen to me and my complaints, went to first an Integration Doctor, who diagnosed me with severe heavy metal toxicity and casein allergy and severe gluten and soy intolerances, along with about 20 other food intolerances, and then to a gastroenterologist to “confirm” if I did have Celiac. The biopsies came back negative, as did the gene test. But, the gene test only tests for 2 markers; they’ve since discovered 9 others. So who knows? All I know is that since I’ve stopped eating gluten I no longer have a bloated and upset stomach and my GERD went away. I’m also, finally, after a lifetime problem with constipation, getting that under control as well. I started doctoring with a Naturopathic Doctor in Oct 2009. He tested me and found my body to be extremely deficient in some key nutrients, and my body’s detoxification ability is virtually nil. I’m also teetering between adrenal fatigue and adrenal collapse. Since I’ve been doctoring with him and taking supplements for those vital lost nutrients, I’m FINALLY getting better. Yes! I also wanted to mention a vital fact: about 30-60% of the American people have a gene mutation in the P450 chromosome family that prevents their body from detoxing and metabolising correctly. So if you happen to have this problem on top of Celiac/gluten intolerance, well, just staying away from gluten isn’t going to allow your body to heal because you’ll need to fortify your body with the nutrients your body is lacking. As well, you could be malnourished and not know it. That’s what happened to me. The gene to test for is CYP2C9. Allopathic doctors don’t understand the need to test for that gene, but Integration and Naturopathic Doctors do. For further peace of mind, that might be something others will want to look into as well.

  8. Can you comment on gliadin? This protein includes wheat, rye, and barley but also spelt and kamut. As well as potential problems with oats,amaranth and quinoa. As a celiac that has been agressively eliminating gluten for 1 and a half years, I still have been experiencing abdominal bloating and pain. I am going to be eliminating all of these grains I have mentioned here to see if any improvemments occur. Another really interesting idea is the elimination of FODMAPS. If you are not familiar with the malabsorbtion of fermentable carbohydrates, please inform yourself. The IBS syndrome and gluten intolerant audiences should educate themselves to the possibility of a secondary intolerance. Reading “IBS-Free At Last” by Patsy Catsos gives you the information as to just what FODMAPS are and the instructions for identifying and eliminating them from your diet. As well as steps to reintroduce them back into the diet in a systematic way, observing symptoms. Thank you for all of your efforts to helping us live gluten free safely.

  9. Can you PLEASE send one to my mother’s doctor? She has no clue as to how to diagnose celiac and told my mother she doesn’t have it. I disagree, but of course my mother is happy with that diagnosis and is not willing to go to another doctor who specializes in celiac. But I inherited celiac from one of my parents. My mom has LOTS of symptoms, and I’m 99% certain it’s not my dad.

  10. Sounds like a wonderful and important book. Thank you for all you do to educate doctors. My journey to being diagnosed celiac was long and arduous like many others I have talked to. It’s so hard when the medical professionals that you want to trust don’t know how to help you. We have a very active celiac support group in my town and I would love to share this book with them.

    Thanks. Ruth Barz

  11. My daughter (age 29) was diagnosed with Celiac a few years back. She’s also following a vegan diet, in addition to the gluten-free diet. I would like to win a copy of the book for her. I certainly hope this book can accomodate some vegan recipes too!

  12. I would love a national state-by-state list of dieticians who are experts on the gluten-free issue. So far I have not been able to find one in my area. Perhaps a registration for such dieticians could be set up somehow. Like general practitioners and internists, many dieticians are not that familiar with how a gluten-free diet must work, so that they can make the proper nutritional recommendations. I worry most, in my 2+ years on a celiac-diagnosis-driven gluten-free diet, about not filling all my nutritional needs.

  13. Wow – would love to win the book. If not, I will definitely be buying it. I’ve been gluten and dairy free for 9 months and I’m still struggling. I feel better without question and I’m committed to being gluten and dairy free. Hidden ingredients are definitely my down fall.

  14. I would love to win this book. There is a lot of mis-information out there and I would like to have a book from a gluten-free expert!

  15. I would love to own this book. I am a textbook patient. Over 10 years of MAJOR symptoms until my diagnosis. Even then – I am the one that figured it out. Thanks for all the great information you provide.

  16. As a suffer of celiac – diagnosed 61 years ago as an infant – nearly dying from malnutrition – has been an experience. Flareups come and go. As a mature adult I have learned that to saty gluten free is the way to go. I have spent many years being told by doctors that it was impossible for me to have celiac. Back then it was considered a tropical disease – I lived in NY. I would really love to win this book because I believe I still need to learn ore about this problem. When you have celiac as an infant, suffer from extreme malnutrition – it does something to your body, and your life.

  17. We bought this book years ago for our daughter, who was diagnosed at age 24 (after a lifetime of being unwell), and now my husband needs a copy of his own (to share with me!). He was diagnosed 6 years after our daughter, and as he is a marathoner and vegetarian, he needs to be sure he’s getting all the nutrition he needs. He can be lazy, and lives mostly on tofu!

  18. I would love to win a book! My friend and I have been doing gluten free for months. She’s had tests that say NO, and I’ve had issues, no test, BUT being gluten free has solved MOST of our issues. We are HUNGRY for information. The more informed….

  19. I would love to read your book so many symptoms my Dr refused to test me so went off gluten and finally here 2 years late went to a nautralpath and I am still testing positive so now my Dr has agreed to send me to a dietiation to see where I am getting the gluten It is a process of educating myself

  20. This sounds like a book I should have and read as I travel the gluten free life path. Please pick me!! thanks for a great site.

  21. 10 years of being tired and unexplained responses. Then finally 4 years ago they sent me to a hematologist. Every 3
    months I had blood work. Pancytopenia /ITP.. PLT run 75. to 80. Finally a visit to the emergency room lead me to a gastroenterologist. Then more testing began. I couldn’t believe it. I had to beg for the biobsy. My sprue test had high numbers. he didn’t think I needed a biobsy. Well I finally had one. Yes to celiac. I’ve had it for years. It’s been 3 months and my blood work still hasn’t improved being on the life style change. yes ,I call it a life style change. (not Diet) I would love to read your book. Now, 2 more people have been DX with celiac. That ER visit saved my life and my familys. I can now enjoy holidays. My family has no choice but to have a gluten free menu. If I receive t his book it will not only have one persons use. It will be shared with my entire family.
    Thank you
    Bonnie

  22. I am a dietitian and diagnosed celiac and continue to be amazed at how much there is to know and keep abreast with the latest research and findings in the celiac diet! Talk about constant evolving body of knowledge and opportunity to discover! I appreciate your website and all it has to offer. Very sad to hear about Godiva chocolates and Lindt chocolates. I would love to have a copy of Shelley Case’s book! to add to my library of references!!

  23. I was diagnosed 9 months ago and have just basically been winging it on information from the internet or buying food that’s made ” gluten-free” and sold at really high prices. I live in a small rural town that doesn’t have a doctor or dietitian that specializes in celiac. I went to a seminar 90 miles away to another city that had a group of gastroenterologist and one of them was speaking. After the presentation I asked him if I made an appointment with him could he educate me on the foods, nutrition, & hidden gluten, etc. I was told by him that he didn’t have that kind of knowledge, just what celiac was and how to diagnosis it. I found out later that they have a dietitian at the hospital but no one specializing in celiac. So my only other choice I’ve found so far is to travel 145 miles to the next larger city in hopes of finding a celiac dietitian. I really could use this book by Shelley to educate myself with. Living with celiac is bad enough but living in the sticks with it is worse.

  24. I’m one of those people who’s blood test came back negative, but my blood test for a wheat allergy came back “slightly” allergic, so I decided to stop eating wheat and started to feel so much better, I then decided to give up gluten all together! I’ll never go back to that life of hell! I say I have celiac because it’s easier.

    Can’t wait to read this book! Would love to read it for free!!

  25. I am a picky eater who was just diagnosed with celiac. Winning Shelley’s book would be a godsend for me. I need all the help I can to get me started in the right direction on this new lifestyle. Thank you for the opportunity.

  26. I fall into the negative results with celiac blood tests. However, I had DNA saliva testing done on my own which showed one positive gene for celiac from one parent and a gluten-sensitive gene from my other parent. I would love to WIN and READ this book!

  27. I am a Kinesiologist working with many Clients who have Celiac or intolerence to Gluten. This would be a great resource.

  28. 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.

  29. 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!

  30. 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

  31. 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

  32. 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

  33. 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.

  34. 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!!!

  35. 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.

  36. 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.

  37. 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!

  38. 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

  39. 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.

  40. 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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