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!
{ 64 comments… read them below or add one }
/me raises hand and wave it in the air wildly
Ooh, pick me, pick me!
Thanks for offering the chance to get this book for free. It looks fascinating!
I would LOVE to win a copy of her book!!!!!
The book looks very interesting!
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.
I would love to win the book!
Did they mention anything about future testing for Celiac Disease without patients eating gluten?
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
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.
What a wonderful offering on a miserable Monday. I would LOVE a copy!
Fingers crossed. Sign me up. I’m feelin lucky.
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
I would love to win this book!!!
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!
A friend who is familiar with Celiac said this book is a great resource. Sounds like it should be in my library!
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.
/jumps up & down while clapping her hands. I love that y’all give away stuff that’s so very useful!
I, too, would love to win the book!
Thanks for the offer. I enjoy your blog, and am just starting one of my own. Check it out! We’re being snowed in here in Wisconsin as well. 10-14 inches today alone! Stay safe.
Greetings from snowed-in Maryland. The book sounds great. Thanks for all the info. Now – are you on Facebook???
Oh, I want one!
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.
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.
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.
Would love a copy of the book. My nephew has been recently diagnosed and I know it would really help him.
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
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!
Sounds like a wonderful resource. Thanks for the opportunity to win this book.
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.
Hope I win one of Shelley’s books!
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.
And of course, I would love to win this book!
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!
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.
I appreciate Shelly’s work. Keeping up on this is exhausting and frustrating.
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.
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!
Ooooo, I would love to get a copy of the book! It seems so helpful!
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….
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
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.
I would like a copy of the book.
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
This book sounds helpful – especially when explaining my diet to friends
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!!
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.
Love the article and would love to win the book
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!!
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.
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!