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The G-Free Diet: An Opinion from Elaine Monarch, CDF



Tonight- like the many readers of the Celiac List-Serve- I received this letter from Elaine Monarch of the Celiac Disease Foundation. Because this letter accurately reflects my own view regarding the new book, The G-Free Diet, I am sharing this public letter with my readers.

Celiac Colleagues:

I am writing to call your attention to the current publicity surrounding the new book, The G-free Diet, A Gluten-Free Survival Guide by Elisabeth Hasselbeck, co-host of The View. While it is important to call attention to celiac disease, the information must be accurate - the inaccuracies in this book are potentially dangerous and detrimental to celiacs and to those yet to be diagnosed if people self diagnose and start eating GF. Our mission is to assist in getting people accurately diagnosed and the message in this book could defeat this mission. It appears that this book is being marketed as a fitness diet - eat g-free and feel so much better. Celiac is incorrectly referred to as an allergy not an autoimmune disease. The GF diet is the medically mediated prescription that controls the condition for a diagnosed celiac. Several items in the book are misleading and inaccurate and place further limitations on the GF diet. The gluten-free lifestyle is a lifelong commitment for the diagnosed celiac, not an option, not a fad diet - adhering to the GF lifestyle requires patience and persistence. This lifestyle can not be trivialized.

Thank you.

Elaine Monarch

Celiac Disease Foundation
Founder and Executive Director
13251 Ventura Blvd. Suite 1
Studio City, CA 91604

35 comments:

  1. Very interesting viewpoint and one that I share to a degree. I cannot comment on the book specifically as I haven't read it but I'm glad you brought this article to my attention as I can see how this book is going to get a lot of publicity.

    While I definitely advocate for the proper testing for CD I also believe that there is an even bigger undiagnosed population of people with gluten sensitivity who do not have full blown CD but must adhere to a gluten-free diet. So there are two sides to this coin for me.

    #1 you should get tested for CD before starting a gluten-free diet
    #2 if it makes you sick, don't eat it! (no matter what the tests say!)

    Thanks for the thought provoking post Karina.

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  2. I guess I'm going to think twice about this book. That is disappointing to me, I must say.

    But I do agree with Crystal, I've found quite a bit of success in eliminating foods from my diet. I have taken a test and shown positive for Gluten sensitivity, but have also found foods, like soy and too much dairy also bother my system and I feel better when I skip them.

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  3. I also haven't read the book, but plan to read it. I watched Elizabeth's segment on the view and felt she spoke accurately of the disease and only hopes to help others. I am dealing with the issue of proper diagnoses currently, and it has been beyond frustrating. A year ago, I went on a total elimination diet while breastfeeding my very sensitive son. I eliminated all of the top 8 and then some. Once weaning my son to elemental formula this year, I continued to stay gf and dairy free only cheating on special occasions. I found that I would become very sick from cheats and decided to go completely gf. I once even tried Rice Crispies to see if it was truly gluten or just wheat that was the culprit. I was sick 5 times that night after eating them. My blood test was negative and my gi said a small bowel biopsy may or may not show CD, so it could still leave me to wonder. He said if I was that effected, then I should eat gf, or I can go back on gluten and then get tested. Yeah right! I strongly believe I have CD regardless of a blood test. I fit almost all symptoms and have other auto-immune diseases. I will continue to be gf. I feel it is my only option, so while I do not have a Celiac dx and probably never will, I will live this way. While I think that proper dx is important, it isn't always so simple. This diet has completely changed my life and I wish had the dx as strange as that may sound. I would recommend the diet to people who struggle as well, even if they don't have it, but I agree it is best to get tested first. That wasn't an option for me.

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  4. Not a Hasselbeck fan, and probably wouldn't buy the book anyway.

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  5. Karina -
    Love your blog, but I have to say I disagree with this statement. After nearly 7 years of misdiagnosis and numerous health problems, we took my son off gluten based on a doctor recommendation and the turn around has been amazing. It has changed his life and ours.

    I don't need to do a biopsy to confirm what I already know any more than I need to meet God face to face to believe in him. Like others, we could have waited months on gluten to try to obtain an "official" diagnosis or we could have made the switch based on all of the information we had pointing to the truth. JMHO.

    Love your blog always -

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  6. I haven't read the book, but as a coeliac I find the number of people following the diet as a health fad worrying because so many of them "cheat" when they feel like it, which just gives restaurants the idea that everyone who says they can't eat gluten can do this and a little gluten won't do any harm. Although it might just jealousy on my part I guess, I'd love to be able to just "take an evening off" for a meal out or because I'd seen a particularly tempting cake!

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  7. I can't believe that such a book was published in the first place without working closely with this foundation. Seems like there should have been more research done, and that several experts should have signed off on it.

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  8. Like Molly Beth, I too do not have a proper dx. Just as I saw the MIRACLE changes by going gluten-free, my COBRA (laid off from a non-profit last July) went to almost $700 per month. That meant no more health insurance. Still unemployed all these many months later with savings running out come August. Eating G-F is not cheap either, which really speaks to how food is politics, but I digress. So, I continue to heal my body as if I had the formal dx of celiac's, but knowing I do not have the luxury of rent/food AND medical care at this point in my life.

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  9. Hi, having self diagnosed first and then later on recieved offical Coeliac 'Certificate' I can understand how you would scrap the test if it makes you feel better. However, if the book really has false information in it, it is a potential health hazard. To be honest, the letter did upset me because I know people are going to read the book and then try and be helpfull and make it harder for us really. And it annoyes me that a book with false medical information can still go on the market. Does that make sense?

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  10. I get really annoyed at people who listen to my story about gluten and dairy intolerance and think it's like a diet that helps me to loose weight! I wish I could eat normally I wish I didn't have to give up so many of my favorite foods and I wasn't even overweight to begin with. There is no silver lining to a gluten free diet it's a pain even with all of your wonderful recipes.

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  11. Thank you for passing this along. I went to the book store yesterday to check it out and was amazed at what I was reading. I thought maybe I was just biased and had a more strict point of view. I guess the inaccuracies and "fad" diet theme I was picking up was right on. I even shared that with a very nice older woman who picked up the book. She shared with me her daughter couldn't eat gluten and was looking for more information. I told her there were much better sources and she went to get those. I would like to share this letter on my blog too if that is OK with you. We really need to look out for each other and get good information out there.

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  12. Thanks for this thought provoking post, Karina, and the thoughtful and insightful comments that follow.

    As a friend o mine says about another disease we happen to both have, MS, the issue of diagnosis is fraught. A low fat diiet DOES help people with MS, for instance, but many neurologists discount or don't know about the extensive research that supports this. As far as a celiac diagnosis goes, II happen to have been tested years ago by a naturopath as having intolerances to wheat gluten, dairy, eggs, and, alas, garlic, and mushrooms. Over the years I have tried adding said things back in off and on. I am now in the process of realizing I will mostly likely always have to be free of all gluten, dairy and eggs. Is it celiac disease on top of the MS? I don't know. But I do know how slippery diagnosis is, and how real symptoms are. It is disconcerting if something is touted as a "fad" when it is really needed by some of us with serious illness. But I find this happens all the time, with other diseases, too. Things about that are real in experience are discounted clinically, due to the politics of medicine and research design. And diet and nutrition are not exempt from these politics. In fact they may be the most burdened with them of all.

    Like the previous poster, I am not a diagnosed celiac, but know beyond a doubt I feel better eating this way, and that it has softened my MS symptoms and the way they aggravate other things, and so I will continue. I also follow a very low fat diet based on the life work of Dr. Roy Swank, who was a professor of neurology with his own practice, and treated MS patients with it successfully over the course of his career, and which has helped many many people stop or slow the progression of MS, and those suspected of it, but who can't get a definitive diagnosis. These are things I know in my bones are really helping me. I do have a diagnosis of MS, but sometimes, of course, wish I didn't. So diagnosis is a bugaboo, often necessary, but always problematic and open ended, no matter how you slice it.

    Thanks for the provocative post, and for all your great tips and recipes, Karina. They have made doing this doable, and thereby enhanced the quality of my life and commitment to diet as a fundamental healing force.

    best,

    moonwatcher

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  13. I just finished reading this book and I didn't find much "trivializing" going on. The author has struggled significantly with this illness and does discuss allergies, but definitely recognizes celiac as an autoimmune disease.

    Yes, she self-diagnosed, however, having been through the same physician merry-go-round, I can certainly understand why. If a person can get an accurate diagnosis early on, that's terrific, however, many people do not have that experience. She didn't give up on finding a doctor and in the end, she found a celiac specialist.

    I am not sure what the "inaccurate information" is. I didn't see any red flags in the book. She was thorough and had physician input throughout.

    Point being, I wouldn't write this one off. Doctors still aren't in complete agreement about this illness and many aren't that well-versed in it. Eliminating gluten, while hard, is not inherently dangerous and while I appreciate allopathic medicine for its many benefits, I also acknowledge its limitations.

    Taking time to do your homework, see doctors as approriate and being an advocate for your own health is a good start on the road to becoming well.

    Just two cents from someone who has read the book (and many, many others on this topis:-)

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  14. I was tested for Celiac Disease, and the test found no villi were damaged. However, I found that if I eat even a little gluten (soy sauce, whatever) or dairy, I become very ill. I did do the fecal test, and it showed a sensitivity to gluten and an intolerance to casein. So, while I'm sorry she's presenting it as a fitness book (I only saw her this a.m. on Fox), I am glad the message is getting out that there is more to gluten problems than just Celiac Disease.~~Dee

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  15. I have been hearing about this book- though have yet to see a copy. Though there is so much information available in books and online, I think it is critically important that we look at the background of the people providing the information, that references are properly sources where applicable and that we use our own inherent judgment before trusting anyone's opinion on what is best for our health- and in this I include advice from natural and conventional health care practitioners.

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  16. Hi, just came back to check the box for getting follow up comments--great discussion!

    moonwatcher

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  17. I have not read the book, so cannot comment on it directly. But I struggle with the idea of a spectrum of gluten intolerance, similar to the autism spectrum.

    Positive blood test and positive biopsies are required for diagnosis of celiac. And eating gluten before for an extended time before testing is required to prevent a false negative test. But what to do about folks who have positive blood tests and negative biopsies? They could also have the opposite scenario, though most MD’s probably would not do a biopsy with negative blood tests.

    I cannot get a study I watched on video from Digestive Disease Week 2008 out of my mind. A researcher that I have been unable to identify, even with numerous attempts, presented on diagnosing celiac. I believe he was from Scandinavia (possibly Finland) and I have not been able to find his name. If anyone can supply it, I would be very grateful.

    His study tested approximately 150 people suspected of celiac. About half blood tested positive. These patients had biopsies and about half of those where positive. So, in rough numbers, 75 were blood negative and no biopsy was done, if I recall correctly. 75 where blood positive, resulting in 35 who were blood positive/ biopsy positive, and 35 blood positive/ biopsy negative.

    This blood positive/biopsy negative group was divided in two. Half were put on a gluten free diet, half simply told to eat as they had been. Both where followed and tested a year later.

    The gluten free group had negative tests the next year. The regular diet group still had positive tests. I am not sure what the results of the biopsies were. The researcher stated that our requirements for celiac diagnosis might be too strict. And this makes me wonder about the possibility of a gluten intolerance spectrum, with celiac as an advanced endpoint.

    I always tell people they must eat gluten before testing. And understand their frustration when they do not get a definitive diagnosis. I fully understand if they try a gluten free diet, and continue it if they feel better. I Are they preventing some of the numerous and significant complications of celiac from developing?

    I also accept the challenges of the gluten free diet, and do not recommend as a hot new weight loss fad. On one hand, that is almost humorous. Think about all the folks who are now struggling with weight gain after going gluten free.

    We (the world scientific and medical communities) need to continue researching gluten intolerance and sharing the findings. It takes a while to prove things that start out as observations. I believe gluten intolerance is in the discovery phase. I see why folks search out unproven information, in large part because we often do not have answers.

    We all need to increase the availability, nutrition, and enjoyment of gluten free foods. Thanks Karina for all your efforts.

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  18. Thank you- everyone- for such thoughtful and insightful comments. This is such an interesting discussion.

    I appreciate all sides to the diagnosis issue. I had no health insurance when I had symptoms, so an endoscopy was beyond my budget. I started with a gene test to determine if I carried one of the genetic markers for celiac; I did; in fact I have HLA DQ8 and a gene now being looked at for gluten sensitivity, HLA DQ1. At the time the gene test was $130, and I could order it myself, on-line.

    Now there is a simple blood test for gliadin antibodies (this was not available to me back in the day). Any doctor can order it for you.

    The important note is- if you request a Celiac Panel/blood test, you MUST be consuming gluten for it to be accurate.

    This is one of the reasons the misinformation being broadcast via The View and YouTube to "try the diet- it's good for everyone" is not helpful.

    If you are not eating gluten at the time of a blood test, your antibody numbers might read within the normal range. This may lead your doctor to believe you do not have celiac disease when you actually might be sustaining damage.

    Or it may also encourage some to cheat now and then, or even give up on the gluten-free diet because, "Well, I wasn't really a celiac".

    The problem is- celiac wreaks a lot of silent havoc. Many celiac induced conditions- osteoporosis, for instance- have no symptoms. Until you fall and break a hip.

    Not everyone has the classic sprue symptoms Hasselbeck suffered. Some have less obvious symptoms such as low ferrtin levels, B12 deficiency, migraines, or a skin rash known as DH.

    Her broad claim that the G-Free Diet lowers cholesterol I find astonishing. As a classic sprue celiac myself, I had dangerously low cholesterol for years while I was eating gluten.

    After a year of eating gluten-free, my cholesterol began to climb (I was finally absorbing food) and in fact, within the next few years my cholesterol numbers climbed to borderline high. (This experieince also happened to the late, great Bette Hagman, gluten-free cookbook author.) While eating may impact cholesterol for some indivduals- low or high- there is no One Size Fits All truth regarding the G-Free Diet and cholesterol.

    My personal belief regarding related autoimmune disorders is that research will eventually support a connection with consuming gluten and casein, and even other proteins. Autoimmune diseases run in families, they are genetic. And they tend to "run in packs" as a rheumatologist told me.

    I have absolutely no quarrel with anyone who wrestles with an autoimmune disease believing that eating gluten-free helps alleviate symptoms. The genetic markers for several autoimmune diseases often share family history. Without going into medical detail, my family medical history features several autoimmune diseases, two cases of diagnosed celiac, and various cancers.

    The bottom line?

    Research into celiac genetic markers is on-going. As is the relationship between various autoimmune diseases. They don't have all the answers yet.

    This we know for sure:

    Gluten is the trigger for celiac disease.

    Celiac disease is life threatening. It's not a disease where you can cheat on holidays, or eat "just a little", or pick the sausage off a pizza crust and call that g-free.

    Cheating or risking chronic exposure through cross contamination (Hasselbeck recommending eating out at Wendy's boggles the mind) keeps the body in a state of inflammation. Inflammation is the key that unlocks disease.

    Presenting the gluten-free diet as a fun way to "lose weight" is misleading (untrue for many- moi included; I've gained 20 pounds since going gluten-free- and yes, that's a good thing). It also undermines the seriousness of our dilemma eating out. It's hard enough convincing extended family, friends and wait staff that "just a little" won't hurt us, that this diet of ours isn't just another fad.

    Celiac disease ups our risk of non-Hodgkin lymphoma, anemia, osteoporosis.

    Diseases that put you at risk for celiac disease are: Type 1 diabetes, autoimmune thyroid disease, microscopic colitis.

    I'm sure other thoughts will occur to me throughout the day. keep the conversation going- it's an important discussion.

    Thanks again, and be well,

    Karina

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  19. I agree there is NO SIZE that fits all. I have been tested for celiac and do not have the disease, however, I'm clearly gluten intolerant. Gluten makes me bipolar/manic depressive and so strict adherence to the GF diet is vital to maintain my mental health. I also have two diagnosed Aspergers Syndrome/ADHD children whose condition greatly improved on a GF diet. Like Crystal(first poster) said, if it makes you sick in any way, shape or form...Don't eat it!

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  20. I would recommend checking out Tom O'Bryan, a clinical nutritionist/chiropractor from Chicago who has made celiac, non-celiac gluten sensitivity and autoimmune disease his life's work. An interview with him can be found on www.celiac.com; I found a decent overview of the information he presents in lectures at - http://missionhillspt.wordpress.com/2009/04/15/summary-of-gluten-research/. He has researched hundreds (or more) of peer-reviewed journal articles which "connect the dots" about how the inflammatory response to gluten (and subsequent intestinal damage) leads to nutrient deficiencies and chronic degenerative conditions - particularly autoimmune diseases. Based on basic biochemistry, physiology and biology, this is a fantastic resource for usuable, fact-based information.
    I'm not a fan of Ms. Hasselbeck, but she has at least provided a public forum in which we can begin some very important conversations. I hope all will remember that what works for someone else may not be exactly the path for you, as there can be decades of contributing factors to consider.
    And thanks many times over for your postings and recipes - all well done!

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  21. I think that this exposure from a celebrity is great and will help more than hurt. I received an email today from a woman who, because of the publicity surrounding Elisabeth's book, came upon my website and read all about celiac disease. All this new information has made her realize that all this time, all her problems she has been suffering (she even had to quit her job), all her misdiagnoses (she was told it was stress and to eat more fiber) was maybe due to gluten. I have encouraged her to get tested for celiac disease even though she has been gluten-free for 4 days and already feels better (I know what that feels like). If it weren't for a celebrity's voice, who knows how much longer this 26 year old woman would suffer.

    I did read the book, and wrote a review on my blog. I pointed out some inaccuracies, but overall I thought she did a really good job. I have read pretty much every book out there on dealing with celiac (some of which also had inaccuracies), and I will say that I think she did a better job than some others I have read.

    I don't think she is trivializing anything. She is quite serious about her diagnosis and being strictly gluten-free. I think that because she is a celebrity OTHERS are trivializing it.

    Dr. Peter Green, the foremost authority on celiac disease, wrote the foreword of the book and lent medical information.

    To kitchen-therapy: here is the video you were looking for from Digestive Disease Week:
    http://surefoodsliving.com/2008/06/09/progress-in-treatment-and-screening-for-celiac-disease/

    I really think we need to all look at this in a positive light, see the good that will come from this book. I don't think that anything she has said so far is so damaging to our cause.

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  22. Good for you for getting the word out. I remember seeing this reviewed somewhere and I thought to myself, Huh? So many people writing books just to make money. It's a sad commentary on our society.

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  23. I am newly diagnosed with celiac - blood test done April 12, biopsy May 5. In between the two, I bought Hasselbeck's book, and have learned so much from it. The most important thing I have learned is the absolute importance of following this strict way of eating, and avoiding cross contamination at all costs. I didn't interpret the book the way others have just stated. For me, this was what I needed to understand the importance of following the strict guidelines, and watching EVERY SINGLE THING that goes into my food and onto my plate. I am grateful to Elisabeth for writing this book and giving her personal account. It is raising awareness of this disease outside the realm of people affected by it, which I think is important.

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  24. I think there are two separate issues - the book and her comments in the television interviews. I have a problem with her interview comments that everyone can benefit from eating gfree and the segment on Rachael Ray where Rachael held up the cover of Elisabeth on Fitness mag and said something like if it helps you look like this, then try gfree. Elisabeth has said that she wouldn't choose to eat any other way and this is how she ate to get back in her swimsuit. Also, don't think the word allergy should be used in interviews & need to explain celiac symptoms/testing more. Also, she makes eating out gfree seem so easy on the View. Bottom line, if you read the book, it sounds like you will understand celiac disease despite some inaccurate info, but what about those who never buy the book and just go by her interviews?

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  25. I haven't lost any weight since going gluten free...just the opposite. I wish it was a fun way to lose weight!

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  26. To Alison-surefoodsliving.com,
    Thank you for posting the link to the video of Dr. Maki's presentation on celiac diagnosis at Digestive Disease Week 2008. I will refer to it often.

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  27. I have also read the book and while I agree that some of the book had great useful information and had great potential (and I really did like parts of it), she still blows it. This book is supposed to be a guide. But in it, she admits to going to the White House, not telling them she has a food intolerance and then eating a full gluten meal. And, comments on how she didn't get sick that night. This is a guide on how to live gluten free with celiac disease? I would not recommend it to someone new who didn't know better. To top it off she was sitting with the First Lady, Prince Charles and Condoleezza Rice. What an opportunity to teach about celiac! She blew it.

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  28. great discussion. i was diagnosed at age 48 with underactive thyroid and put on meds for that and my dose still isn't stable. i learned recently that gluten can trigger so many diseases, hypothyroidism included, so i began to educate myself about it. long story short, i decided to try eating gluten-free, and have concluded that i do indeed have some level of sensitivity or cd, and i must rid my diet of gluten. now through reading this forum i'm learning that i have to start eating that crap again if i want the blood test to be accurate??!!! i don't want to do this!!! it means i will start to feel sick again. exactly how long do i have to eat gluten for the test to be accurate?

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  29. Cheryl- The proof is in the pudding. If your thyroid antibodies decrease and normalize on a gluten-free diet (they did for my mother who has Hashimoto's; it took almost a year; she is not on any thyroid meds now) there is your answer.

    I am not a medical professional and I am not giving medical advice here; I am conveying my mother's story. It helped her and she continues to be gluten-free and thyroid medication free.

    If you need more proof to remain gluten-free, you'll need to ingest gluten for six weeks or so for the gluten antibodies blood test. But if your thyroid antibodies are falling on a gluten-free diet, the thyroid testing might be all the evidence your endocrinologist needs.

    Good luck!

    Karina

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  30. Thanks Karina. At this moment in time, I don't feel like I need any more proof for myself. It'll be very interesting to see how my body responds in other ways (thyroid, blood pressure, weight) on a sustained gluten-free diet. Your site offers amazing information for someone like me just starting out...we're definitely eating in much more now than eating out, so the recipe section gives me hope that there food pleasure is still possible!

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  31. Hi Karina,
    I posted earlier about my issues getting a positive test and how I have been GF fot too long now and will not return eating it anytime soon. I was wondering about the gene testing. Where did you order your testing? I feel that it would be so helpful to have a dx for family members and for understanding. I am convinced there are others in my fam with CD if I do in fact have it, which I lean more and more on everyday. But, the drs won't listen w/o the proof of a positive dx. It is so frustrating. SO I am considering the gene testing, but just read this article http://www.celiac.com/articles/21628/1/Celiac-Disease-Genetics/Page1.html and fear it could still be negative and I still have it. This would be devastating for me. I know regardless what ANY test says, I have to be gf, but I would really like the dx for my son and others in my family. What are you thoughts?

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  32. Elisabeth clearly stated, on national television, that the G-Free Diet was something EVERYONE should try.

    Correct me if I am wrong, but if an individual does not have the genetic markers that predisposes them to damage from gluten, then they would not benefit from a g-free diet, correct? My understanding was a person with a healthy immune system needs the nutrients provided from wheat, barely, rye and kamut. If an individual wants to shed a few pounds, I'm confused why the g-free diet is even recommended.

    Thank you Karina, for your excellent explanation and view points.

    Cheers,
    Crystal

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  33. I have an official diagnosis of celiac and probably needed it to start and stay on the diet since my symptom was anemia. It was a fluke I was tested for Celiac at all, and even with blood work indicating celiac, I had to manipulate a doctor (of 6 I'd seen that year) into doing the biopsy. Every doctor said "this blood work is a mistake - you don't have GI distress and therefore you don't have celiac - period". I almost had to threaten legal action to get the doctor to give me my test results...he was embarrassed to say the least.

    I think people should be tested for celiac before starting the diet. As stated earlier, there is such a thing as false negatives for blood work and according to Dr. Cynthia Rudert in Atlanta, many doctors don't even know how to do the biopsy correctly when looking for celiac. She said they need 6-8 samples. My doctor took 2 which is the norm in this country.

    If tests are negative or inconclusive, and evidence points to gluten being the cause of someones health problems, they can try the diet and see if it works - of course. If they feel better then they have some problem with gluten and should avoid it.

    Another concern is that many people can't get a doctor to test them for celiac. This is happening more and more in the U.S. I have a friend who was on more than 10 daily meds for all types of issues. She was only in her early 30's. Once she was diagnosed with celiac, she went off all but one med in less than a year. The last one she got off was the anti-anxiety drug and that was because she kept eating out and getting sick. Certainly it was in the best interest of the drug companies to have this person on the meds she was on, and more down the road, for the rest of her life.

    One of the best things about the the book is Dr. Green's forward. He explains that there is little training of doctors about celiac (in this country) as there is no treatment that the drug companies can benefit from. He states that the drug companies in many cases are funding med school programs.

    My friends case is extreme but probably half the people I've met with celiac were able to go off some rx meds after going off gluten. I have not had to take an antibiotic in over 3.5 years, the last round was one month before I was diagnosed. If one million people (or more) go gluten free and possibly off some rx meds because of it, this is bad for business for drug companies.

    The best thing about all the press the book is getting is that it's doing what we (the gluten-free community) have not been able to do - shine a mainstream media spotlight on celiac and gluten intolerance. The worst thing about the press the book is getting is that the book is not accurate about many parts of the diet and gives some pretty lame advice about social situations. It's good advice to say you should always have food with you if leaving home for two hours or longer. It's bad advice to say you can't have a gluten free meal at large social outings and that Outback salad dressings are not safe because of the citric acid in them.

    The book's release has helped our cause. Now it's time for us to shine the spotlight on the inaccurate information in it. If we don't, I think we are doing an incredible disservice to our own plight.

    Tiffany Janes
    Atlanta Gluten-Free Examiner

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  34. Intestinal inflammation leading to intestinal permeability is a huge problem that is underrepresented in our population. We tend to ascribe to the idea that the body's immune system is malfunctioning, but is that really the case? If you are putting in something that you cannot digest, inflammation will follow meaning that the body can't do its job of assimilating and absorbing nutrients. Antibodies can be made to proteins that can't be digested especially when they leave the intestines 'leaking' into the blood stream. That doesn't sound like a body system that isn't working properly but is working properly given the environment it must work in.

    People who are intolerant of gluten or dairy or other foods risk the same inflammatory response as those who have been diagnosed with Celiac. Constant inflammation can lead to other diseases.

    I am tired of seeing too many people benefit from removing gluten, meaning they aren't tired, depressed, not longer deficient in nutrients, don't have to run to the bathroom, can walk straight and a myriad of other problems resolved from not eating something that causes inflammation because their test is normal. This gives them a false sense of security. The leaking intestinal barrier and poor absorption is never addressed and the person goes on to develop chronic, debilitating and/or life threatening diseases that shorten their life. The human costs cannot becalculated. Tests are part of a picture in treating a patient but they aren't the whole book. They should be taken in context with their symptoms and presentation in exam as well as how they feel or respond to ingesting certain foods. This means that the practitioner must be knowledgeable in this area. Many gastroenterologists are not and few acknowledge intolerance vs celiac. Gluten intolerance and celiac are very underdiagnosed and this is a slow brewing epidemic.

    In medicine we know that it takes a good 8-10 years sometimes more for old information to be deemed as valid or new information to be accepted and assimilated. Why should people suffer in the meantime when the answer may just be don't eat that?

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  35. Part 1 of my post, sorry its so long!

    As a nurse practitioner and gluten intolerant person with multiple 'autoimmune' conditions who has negative blood tests I strongly urge those who advocate positive blood testing to re-examine that idea.

    Hasselbeck is a celebrity and her ability to bring an issue out into the forefront is commendable, but she is not a medical expert and I don't get the impression she portends to be. Americans need to stop looking to Hollywood for answers. You must be your own advocate, study, learn and read.

    I worked in corrections for awhile and I can almost spot a person who has food intolerances. Once they tell me their problems, I can start pinpointing certain foods that are causing problems.
    I have patients who don't eat red meat for example because they don't feel well and can't digest it. Do they need a test?

    There are too many false negatives in testing for celiac. If there isn't any damage to the small intestine or it is not significant, such as almost complete destruction of the villi, they will have a negative tissue transglutaminase. The biopsy is the same. It is taken from three areas of the small intestines and unless it is ordered that the pathologist evaluate the sample for inflammation, it can miss areas of damage and/or there hasn't been enough time for damage to occur. I know a specific case in which this occurred. This person had symptoms of irritable bowel syndrome, high antibodies and negative biopsy. So he was told as countless others are, eat whatever you want. Over the next 20 years he will cause chronic inflammation to his body by continually ingesting a protein he can't digest and damage to his body. What will be the result? Never mind that he gets headaches, fatigue and nausea when he eats gluten and he also gets mucous with eating dairy. He doesn't have these problems when he is abstaining from gluten. Testing can reinforce to a person the need for compliance or reinforce that there is no problem. For this patient his earlier symptoms and high gliandin antibodies were not looked at again because of a negative biopsy.

    ReplyDelete

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