[Miss Emily]

I went to Barnes and Noble today and read through Elizabeth Hasselbeck's new publication, "The gluten-free Diet." First of all, I have to say that I do think that the book is great news by the way of awareness for Celiac Disease. However, it had inaccuracies throughout the publication that I found extremely frustrating and I would have liked to see her work with the Celiac Disease Foundation. The most alarming for me was her constant mention of the fact that she "cheats" on her diet. Especially in her chapter, "How not to be a Party Pooper" where she mentions more than once that she will sacrifice herself and risk it and eat a potentially glutenous food to be polite. She even goes as far as to say that at a White House Dinner she ate a gluten filled meal but said
“felt no pain afterward. My adrenaline completely eclipsed my tummy troubles on that once in a lifetime opportunity.”
Are you kidding me? My issue with statements like this is that it leads the public to beleive that people with Celiac can tolerate gluten now and then or in small amounts. Furthermore, it makes those of us who take our health seriously and remain strict to our diet look rude for not "risking" it and "diving" in. I personally deal with this everyday and do not think it is impolite to refuse something that could make me ill. What if I cannot make it to work the next morning because I am ill from being glutened!? Also, even if she did not have a reaction every time she risked it or cheated, it is damaging her intestine regardless if symptoms are present or not. I have nothing personally against her, and had high hopes for her book, and still think it had lots of valuable information. That being said, Miss Hasselbeck is an advocate for Celiac Disease and must remember that her words impact the general public in a huge way.

[mushroom]

I am in total agreement with you, Miss Emily. Any statement that trivializes the response to gluten is very damaging to our cause. I believe the people most likely to cheat (my sister is one of them) are those who do not experience the full GI response and are therefore not aware of the harm they are doing themselves.

[curiousgeorge]

My son's ped told me I couldn't possibly be compliant with the diet and must cheat. I was furious.

[MySuicidalTurtle]

I put this on hold at the library. Can't believe she'd cheat like that- especially at a White House event! There, if anywhere, could they cater to dietary restrictions, I am sure. It is way better not to eat than to cheat. Anyways, I'll read the book when it comes in and see how I like it.

[jerseyangel]

MySuicidalTurtle, on May 26 2009, 08:23 PM, said:

Can't believe she'd cheat like that- especially at a White House event! There, if anywhere, could they cater to dietary restrictions, I am sure. It is way better not to eat than to cheat.

My thoughts exactly.....I guess what she eats is her own business, but I think it's irresponsible to put it in a book that is supposed to help people with the gluten-free diet.

Kinda like the diet is all well and good, except for special occasions. Gee...if only

[DingoGirl]

Wow, this seems to somehow defeat our cause.


My thoughts about Elisabeth have always been that she was diagnosed at a very young age, and really didn't suffer all of the terrible, lingering effects of undiagnosed celiac, and that it pretty much just hit her intestinally and nowhere else.

I sort of think that what we need is a REALLY famous person to become very deathly ill, by degrees and over a prolonged time, from celiac......then recover and tell his or her story. (would not wish that on anyone but, that's what I think).

My dream is that we get a group of long-suffering celiacs who have recovered on Oprah.


not bloody likely.

[Tim-n-VA]

I know more about Elizabeth than I'd like to but...

She was not diagnosed early. She had no choice on what to eat while on Survivor and had GI symptoms improve on the restricted diet during the show. The problems came back after her return leading to eventual discovery of the problem with gluten.

I'd read somewhere that the book was co-written by Dr. Peter Green but I checked Amazon and it only lists him as providing the forward.

It doesn't take long on this board to see that the responses to gluten vary in type and in intensity. Except in the most general sense, what one of us can get by with has very little exportability to others.

[Miss Emily]

Tim-n-VA, on May 27 2009, 03:57 AM, said:

It doesn't take long on this board to see that the responses to gluten vary in type and in intensity. Except in the most general sense, what one of us can get by with has very little exportability to others.

Unfortunently, that is not true. It may SEEM like the reaction time and intensity of Celiac patients varies. However, whether an individual is actually experiencing symptoms or not from ingesting gluten, the small intestine is being compromised regardless. In fact, many sufferers never have GI upset or common reaction symptoms. This is part of the reason Celiac is so misunderstood and so widely misdiagnosed. Therefore, no matter the differences in diagnosis etc. every Celiac will only be able to "get away with" the same 10 to 20ppm of gluten exposure before compromising their health and safety (this is true whether they experience symptoms at 3ppm, 20ppm or an entire slice of bread).

[Miss Emily]

jerseyangel, on May 26 2009, 05:29 PM, said:

My thoughts exactly.....I guess what she eats is her own business, but I think it's irresponsible to put it in a book that is supposed to help people with the gluten-free diet.

Exactly! Thank you. Yes, this book is marketed as a "Survival GUIDE" for the gluten free diet. In fact, I found this publication in both the Self Help and Diet section of my local bookstore. Therefore, if she is dispensing advice to "guide", then some of her opinions could be detrimental to an unaware/newly diagnosed Celiac. She made her personal choices everyone's business by putting them in her book and labeling it as a guide.

[mimommy]

Miss Emily, on May 26 2009, 05:02 PM, said:

First of all, I have to say that I do think that the book is great news by the way of awareness for Celiac Disease.
The most alarming for me was her constant mention of the fact that she "cheats" on her diet.
Are you kidding me? My issue with statements like this is that it leads the public to beleive that people with Celiac can tolerate gluten now and then or in small amounts.
That being said, Miss Hasselbeck is an advocate for Celiac Disease and must remember that her words impact the general public in a huge way.

mushroom, on May 26 2009, 06:00 PM, said:

I am in total agreement with you, Miss Emily. Any statement that trivializes the response to gluten is very damaging to our cause. I believe the people most likely to cheat (my sister is one of them) are those who do not experience the full GI response and are therefore not aware of the harm they are doing themselves.

curiousgeorge, on May 26 2009, 07:39 PM, said:

My son's ped told me I couldn't possibly be compliant with the diet and must cheat. I was furious.

I have not read her book, but I do agree that Miss Hasselbeck has helped create a new awareness of Celiac disease. I find that if I mention to people that my daughter has celiac, they actually know what I'm talking about. 6 months ago, that was just not the case.
However, I also agree that there is a huge misconception about celiac on an almost global level. Few, if any, who do not have it realize that it truly is a disease, not an allergy. I reinforce to my child constantly that if she didn't know for sure that he had celiac disease, she may be tempted to "cheat" on the diet. I explain to her that although she may not be having any GI pain from it, she is still causing damage to her body that will sooner rather than later create even more pain and problems. The general public is clearly not aware of that fact.
My daughter's ped's partner gave me the same kind of advice, Curious. When he presribed an over the counter pain reliever for her sore throat, I said I wasn't sure if it was gluten free. He responded, "Well, that is exactly why it is impossible to be on a completely gluten free diet!" I was stunned, although not really surprised. Did he think that we were following some sort of new age diet craze? He had her positive biopsy results IN HIS HANDS!!! I think that maybe it would be better to educate himself on the disease to better treat the patient. Or lobby and advocate a little to drug makers and the FDA to clearly mark drug labels, rather than judge a parent/patient. But, hey, that's just mho.
It really is up to each of us to create awareness, so kudos to EH and her book. Each individual must be their own best advocate, double for parents. So keep on learning, keep on trying, keep on helping.

[Miss Emily]

I agree with your statements. We must all be adocates for Celiac Disease if we want to educate the public with correct information. Also, I do recognize that Miss Hasselbeck's book is spreading awareness, which is wonderful. I just can't help wishing that she would have worked more closely with the CDF and NFCA. I think this would have prevented any confusion or errors in her book. Because, after all, we want the correct information being marketed, right? So, hopefully if enough people voice their opinions she may amend some of the information in some way or another. The sections regarding "cheating," using the "gluten-free" diet as a weight loss solution or "fad" diet, avoiding talking about Celiac and hiding it at social functions, etc. just create more misconceptions about Celiac Disease. At the very least, I would hesitate reccomending her book to the newly diagnosed and suggest more medically sound and informative publications (such as those written by physicians and the medical community in collaboration with the CDF). Hopefully, her book will cause a positive chain reaction in publications!

PS. I printed this letter from the CDF and slipped it is a copy of her book before I loaned it, just as a precaution

An Open Letter from the Executive Director of the Celiac Disease Foundation
Wednesday May 6, 2009
Elaine Monarch, Founder and Executive Director of the Celiac Disease Foundation, tonight sent the following open letter to the celiac community:
Celiac Colleagues:

I am writing to call your attention to the current publicity surrounding the new book, The gluten-free Diet, A Gluten-Free Survival Guide, by Elisabeth Hassselbeck, 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 gluten-free. 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 gluten-free and feel so much better. Celiac is incorrectly referred to as an allergy not an autoimmune disease.

The gluten-free 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 gluten-free diet. The gluten-free lifestyle is a lifelong commitment for the diagnosed celiac, not an option, not a fad diet – adhering to the gluten-free lifestyle requires patience and persistence. This lifestyle can not be trivialized.

Elisabeth will be interviewed on Larry King Live this evening on CNN. PLEASE take the time to call in to the show or send an email to Larry King Live to help correct some of this misinformation.

Email Larry King Live at: http://www.cnn.com/f.../form5.lkl.html. The phone number for call-ins to the show is 1-800-676-2100.

Thank you.

Elaine Monarch

[DingoGirl]

Tim-n-VA, on May 27 2009, 04:57 AM, said:

I know more about Elizabeth than I'd like to but...

She was not diagnosed early. She had no choice on what to eat while on Survivor and had GI symptoms improve on the restricted diet during the show. The problems came back after her return leading to eventual discovery of the problem with gluten.

Yup, she DID find improvement on Survivor, and I think she was about 20-ish years old? I guess I consider that early as I wasn't diagnosed until I was 44. I had NO intestinal troubles for my entire life and was extremely physically strong and healthy at age 20, with a stomach of steel and perfectly normal bowel issues until about four years before dx....but had mental/neurological celiac all of my life.

so - all I meant was that......she was relatively young at time of dx and didn't have to go through two or more decades more, become increasingly sicker.....


hey, she referenced this forum in her book......


wonder if she's reading this thread?

[Miss Emily]

DingoGirl, on May 27 2009, 10:25 AM, said:

hey, she referenced this forum in her book......


wonder if she's reading this thread?

Hopefully she is! It's an amazing forum!

[sbj]

I think part of the problem (cheating) might be in the marketing of the book. The book itself is titled "The gluten-free Diet, A Gluten-Free Survival Guide." Notice that it is NOT called A Gluten-Free Survival Guide for Celiacs. I may be mistaken, but from what I have read and seen, she is at least partially trying to sell this diet to everyone, not only to celiacs. In that sense it is quite true that there are many gluten intolerants who can cheat on this diet. Dr. Fasano himself has stated that there are some who are gluten intolerant but who have a level of symptoms such that they can tolerate a slice of pizza every once in a while. (Of course this is dangerous for celiacs.)

I also wonder if someone who has read the book can fill me in? It is my understanding that she basically self-diagnosed after the show and going gluten-free. She later had a genetic test and with the positive response and genetic test she is a "diagnosed" celiac. I have not heard if she has conducted a challenge to test positive via blood panel and I have not heard that she tested positive via endoscopic biopsy. If true (that she diagnosed based on symptoms, diet change, and genetics alone), then it is quite possible that she is gluten intolerant and does not have celiac disease.

I don' think it serves the celiac community well to have so many people out there pushing the gluten-free diet as a healthy lifestyle choice. We all know people who see this as a diet and everyone cheats on diets. These authors have to make very clear the difference between a diagnosed celiac and those who want to try a diet because they feel that gluten, in general, is not healthy for anyone.

[FMcGee]

Right - one healthy eye roll from waitstaff is all I needed to get annoyed with the people who have made gluten-free a fad. I would not eat like this if eating gluten had no effect on me. I really love the heck out of gluten-full foods (pardon me, I'm not even three weeks in yet and still get really sad when my boyfriend orders tiramisu), so I don't get why people would do this to themselves if they tolerate gluten just fine. So, there's probably a combination - I'm annoyed with the people for making it a fad that waiters can ignore, and I'm perplexed at their bizarre decision that treats going gluten-free like it's no big deal and anyone can do it if they want. Petty? Probably.