- By Nancy Kotlowski
- Published 07/27/2009
As much as I love home-cooking, I certainly also enjoy a nice meal out and the social life that usually accompanies dining outside the home. Since being diagnosed as a celiac disease nine years ago, I've learned to navigate through many restaurants safely and with confidence, yet on the other hand, there have also been many times when the message of cooking gluten-free was not properly transmitted from server to chef, and I've paid the serious price for their lack of awareness via a very sick body.
This past incident, however, has made me really angry and that's not like me - but when a restaurant so blatantly goes to great lengths to advertise and serve homemade gluten-free pastas on their menu, in my opinion, they are announcing that they have not only the understanding but the full awareness of exactly what gluten-free food preparation entails - this was so sadly not my experience on that lovely June evening. In fact, I went to great lengths to speak with the restaurant staff, and server five times from when the reservation was made on line, to a phone call, and throughout my meal. What more can a paying Celiac customer do to ensure their safety?
As it turns out, the special gluten-free pasta that I ordered ahead of time was then prepared with a basil cream sauce that was mixed with wheat flour, and then poured all over my delicious pasta and served to me. I instinctively asked the server as the beautiful plate of too-good-to-be-true pasta was placed in front of me, "okay so this meal is 100% gluten-free, correct?"...."Yes, enjoy!"....I was told.
It's this kind of negligence, and lack of understanding about how Celiacs and gluten-intolerant folks truly have to eat to ensure safety, that really incenses me.
I'm sure there are many of you out there who have experienced similar situations, and hopefully survived to tell about it. Our voices need to be heard and in my opinion when gluten contamination of food in a restaurant happens, it's not simply a stomach ache that ensues...there are serious symptoms involved that restaurants all across this nation need to be educated about. It's really a matter of life and death.
Good Morning all, Sorry I have not written in a few days. We have be busy like all of you. Friday night my husband and I went to our favorite place to eat (since the diagnosis). Pizzeria Uno. The most fascinating thing happen. We were sitting there eating our food talking about what else, G-free eating, when all of the sudden the couple sitting in the booth behind ours said "you all are eating gluten free?" As it turned out her husband was diagnosed with many food allergies including gluten. Poor thing. It sure made me appreciate my husbands single issue. Well, we did what any foursome would do..... we completely confused the waiters by moving to another table and sharing our stories. What amazing conversation we all had. And what better an opportunity to have than to spend an evening with people with the same issue.
So the next time you feel a little embarrassed about asking the waiter for special info regarding your diet, don't. You never know who will be listening and what a great opportunity that is.
Have a great day and keep on eating great food!
- By Nancy Kotlowski
- Published 07/1/2009
As soon as the diagnosis of celiac disease came, the doctor told us he would refer us to a really good dietitian. We were very excited to get in front of her because we had so many questions. As with anything else, the more information you get the more you need so you can filter through it all. I found out that the insurance would not cover it. The plan only covered a dietitian for a diagnosis of diabetes. I could have waited until letters were sent and pre-authorization was in place but we were anxious to see what we needed to do. So off we went only to find out that not only did this person not specialize in celiac disease, she told me that I knew more that she did. She was a weight loss specialist. The bill came in the mail the other day for $500.00. I was shocked. So here is a bit of advise. If you doctor advises you to see a dietitian, check with your insurance company for coverage and make darn sure they specialize in the disease or you will be wasting your money.
Have a great day!
- By Scott Adams
- Published 06/24/2009
The first thing that struck me when reading the Warning Letter was that Hassett seems to take too personally the fact that she never received a card or acknowledgment for sending Elisabeth Hasselbeck a sample copy of her own book. Having received dozens of books from various authors, I, too, am guilty of never sending out responses. I, myself, am just too busy to send out blanket responses to everyone who sends a book. My guess is that Elisabeth Hasselbeck, as a host on "The View," receives hundreds if not thousands of sample copies of books per year from authors all over the world, all of whom would love to be on her show—and she is also too busy to respond to all of them.
Looking at the portion of the Warning Letter that deals with "glaring similarities" of language between the two books, I really don't see too much similarity in the examples. The use of the phrase "Rome wasn't built in a day" is certainly not a surprise, after all, it is a saying that is used so often in the English language that is has, in fact, become a cliché! It could easily be argued that neither book presents any truly original ideas regarding celiac disease, and in cases of plagiarism and copyright violation, this is an important point. Since I do not think that a reasonable person would believe that the language examples cited in the Warning Letter would rise to the level of plagiarism, perhaps Hassett feels that it is her ideas that were stolen? Let's examine the ideas that are presented in this letter and try to determine if any of them are original ideas created by Hassett. Below are what I believe are the basic ideas that are presented as "glaring similarities" in the Warning Letter:
- Relapses happen so don't be discouraged / it will take time to figure the diet out.
- Wheat-free does not mean gluten-free.
- Forbidden list of foods with Latin names of grains.
- Symptoms of celiac disease.
- Deli meats might not be safe / the deli slicer could be contaminated.
- Double check products with their manufacturer because their ingredients can change without notice.
- Anti-caking agents used in spices may contain wheat.
- Those with celiac disease ought to shop in the outer isles of a supermarket.
1. Relapses happen so don't be discouraged / it will take time to figure the gluten-free diet out.
A huge focus of the Celiac.com forum is to help support people maintain a gluten-free diet, and here is just one example out of many of a post (from 2006) that demonstrates this idea.
2. Wheat-free does not mean gluten-free.
A search for "wheat free does not mean gluten-free" on Celiac.com yielded 26 results. I've been emphasizing this point since 1995, but here is a link to a Celiac.com post from 2005 with this exact quote in it.
3. Forbidden list of foods with Latin names of grains.
I believe that Celiac.com had the original "Forbidden List" of foods/ingredients that was ever posted on the Internet, and it DOES include grains with their Latin names on it, but if you don't believe me here is my Safe & Forbidden Lists page from May 30, 1997 courtesy of Archive.org. I actually created this page in 1995, and versions of these lists have been reproduced in many books. In chapter 10, pages 70-72 of her book, Hassett uses Celiac.com's Forbidden List from May 31, 2002 almost verbatim in her book without permission and without citing Celiac.com as its original source. Hassett's excuse at the end of the list is "Someone had given this list to me when I first found out I had celiac disease it was not much use to me then and really not much good to me now but I put it in the book in case it would be useful to someone who is reading the book." Wow, maybe this type of disclaimer will allow you to pull anything off of any copyright-protected Web site without proper citation or permission—do ya think?
4. Symptoms of celiac disease.
I think that every book and Web site on celiac disease lists symptoms of the disease (how could they not?). On Celiac.com we had a symptom list that we got permission to reprint from the Celiac Listserv back in 1995, but here it is on May 30, 1997.
5. Deli meats might not be safe / the deli slicer could be contaminated.
Here is a deli post from our forum from December 17, 2005, which contains "Just make sure you get the pre packaged meat from the manufacturer because the deli slicer will contaminate the meat."
6. Double check products with their manufacturer because their ingredients can change without notice.
It's hard to say how old this idea is...I can remember knowing this in 1995, but here is a post from Celiac.com's forum from August 22, 2004, which contains the idea: "You can (and generally should) double check with the company, but I am pretty sure it is still gluten-free."
7. Anti-caking agents used in spices may contain wheat.
Another ancient idea. See the very bottom of Celiac.com's Safe & Forbidden Lists from May 30, 1997 where it says "Ground spices - wheat flour is commonly used to prevent clumping."
8. Those with celiac disease ought to shop in the outer aisles of a supermarket.
Although this may be a newer idea (I am not sure that it is), I did see this idea at this site as well, and I believe that I have seen it in at least one other book on celiac disease, although I can't recall which one. Even if this were an original idea of Hassett's, it does not mean that Elisabeth Hasselbeck committed plagiarism by including it in her book, any more than Hassett committed plagiarism by using the ideas mentioned above that were not originally hers.
The rest of the Warning Letter deals with the layouts of both books, which again, look very similar to the layout of many books on celiac disease. I seriously doubt that this rises to the level of plagiarism, and I think it is very unfortunate that a lawsuit was necessary to figure this out—after all, my guess is that both authors originally had the same goal in mind for their books: To raise celiac disease awareness and to help others who have it (don't try to tell me they did it for the money because I know many celiac disease authors who don't make much money from their books).
Last, I am in the process of writing my own book on celiac disease—AUTHORS BEWARE—if anyone sends me a certified copy of their book I WILL NOT ACCEPT IT!
Are you celiac or gluten sensitive or gluten intolerant? If so, have I got a Gluten-free lipstick to share with you: www.afterglowcosmetics.com
Some of us are more sensitive than others about what goes on our skin and in or near our mouths. For anyone celiac, I am sure you will want to look in to this company.
Anyhow, I just had to share this with you, and please be sure and share your “finds” with me too. Over the next few months, I have some terrific vitamin companies to share with you, which offer gluten-free supplements as well. Pucker up!
First thing this morning I read a post on the gluten-free forum regarding a husband who has celiac disease, while his wife does not. It was like reading about myself. Sometimes we may feel that the person in our lives who has celiac disease is not interested in taking a hand in the treatment. Like the wife in the post, I too find it to be very frustrating at times. But then I stopped and asked myself a tough question. Why am I doing this? "This" being doing all the research, food shopping and preparation AND being the "holder" of the information. Is it because on some level I am the "woman" and it is my job? Yikes, this kind of person is not really me. It is actually more like "if I do not do it, who will?" Like Bruce Willis says in "Live hard, Die Free" it is because I am "that guy." But more than that, if I am honest with myself, it is the praise that is given by other people who tell my husband, "you are lucky to have someone who will do all that for you." Ah now that strikes a nerve. I complain about him not doing enough and then I go ahead and do it. So to all of us out there who have a husband, we need to stop enabling these men to not take a part in their treatment. Having said that, when I find out how to do that I will be blogging about it here.
Until then, happy enabling!
- By Amy Leger
- Published 06/19/2009
I was doing some research tonight when I stumbled upon what I consider a most disturbing celiac-related confession on a website that appears to highlight anonymous revelations. The title was I’m Dying and I’m 19…
“I have Celiac Disease and even though I know it’s killing me I still eat and use products containing wheat and flour…I don’t know how to stop doing this to myself and apparently death isn’t good enough reason for me to quit : / I have also recently been diagnosed with cancer and had surgery to remove it and my appendix where it was found.” — Anonymous on experienceproject.com
The skeptical news person in me questions how realistic the preceding “confession” is, but whether it’s real or not, I believe the idea of non-adherence to the gluten-free diet is a real issue and deserves some space on this blog. So allow me to use it as a launching point for a serious discussion.
Sticking and not-sticking with the gluten-free diet
Just last month on Celiac.com a woman started a thread which said on occasion she just couldn’t “stop binging on gluten”. Then the outcry of support came from readers: concerns about depression, nutritional deficiencies, and maybe an eating disorder. The woman said she’d get help and turn things around - and that she appreciated the support.
Even knowing that infertility, osteoporosis, cancer and more can all be a result of untreated celiac disease, what causes a celiac to turn away from the very diet that could prevent all of these ailments? Is it just because someone told them they can’t have it -now they want it more? Is it because they crave certain favorites so much they just feel they cannot deny themselves? Is it pressure to fit in, in our processed-food culture?
One survey conducted two years ago and printed in Medscape showed that the gluten-free diet is is followed in only 50-75% of patients. The reasons: “unclear food labeling, low levels of knowledge about the diet, reliance on processed foods and the cost and availability of gluten-free foods.”
“Only 2 factors were associated with worse adherence, concern that cost made a gluten-free diet more difficult to follow and the admission that changes in mood and stress levels affected the ability to adequately follow a gluten-free diet.” –Dr. Daniel Leffler, MD Beth Israel Deaconess Medical Center, Boston, MA
Increasing Adherence to Gluten-free Diet
So how do you fix this problem? One thing to do, according to the aforementioned research, is to join a support group. This helps increase your knowledge base about celiac and the gluten-free diet, which will help you sort through any unclear labeling and reliance on processed foods -which were mentioned as problems earlier. I know it really helped me shortly after Emma’s diagnosis.
More recently a few studies have other, what could be considered more-clinical, suggestions. One study profiled on my site last month recommended doctors begin using a 7 question survey to determine gluten adherence, and then work with the patient to increase adherence.
Another study I found on the National Institutes for Health website recommended trained nutritionist evaluations as the best to help people adhere to the gluten free diet.
With any luck, the person who posted the “confession” will hopefully get some help and begin to follow the diet. And we all wish him or her the best as they go through the process of an early cancer diagnosis.
If you have celiac disease and are struggling with staying on the diet, I highly recommend getting involved in a support group or a celiac organization of some kind. Knowing you’re not alone really can help your psyche. If you think it goes deeper than that, consult your physician about other steps you can take to help you help yourself and get better!
- By Mike Menkes, LMT
- Published 06/16/2009
Alternative health care practitioners run expensive tests to alter or favorably increase specific hormones and offer specially-compounded expensive medications that are more compatible than regular Rx's.
There is an easier, simpler and far less costly way: Reduce those foods that deplete your hormones and that inhibit your sex drive.
The following articles will allow you to elevate your mood and rejuvenate your endocrine system with some dietary modification on your part:
Gluten Sensitivity and Depression - http://www.celiac.com/articles/21758/1/Gluten-Sensitivity-and-Depression/Page1.html
Testosterone levels correlate positively with HDL cholesterol levels - http://www.endocrine-abstracts.org/ea/0014/ea0014P628.htm
Diagnosis of celiac disease and its treatment with a gluten-free diet resulted in improvement in the lipoprotein profile, which included an increase in HDL and a decrease in the LDL/HDL ratio - http://www.ncbi.nlm.nih.gov/pubmed/16945614?dopt=AbstractPlus
Soy disrupts Your Hormones and Lowers Sperm count - http://www.soyonlineservice.co.nz/
- By Jen Cafferty
- Published 06/16/2009
"The gluten-free diet is so difficult to adhere to, and it is the only treatment for celiac disease; with our study we are hoping that the mind/body medicine course will assist people with newly-diagnosed celiac disease stick to the diet," states Dr. Sunana Sohi, a Fellow in Gastroenterology at Rush University Medical Center in Chicago.
According to Dr. Sohi, the study is looking for people recently diagnosed with Celiac disease in the Chicago area (within the past 4 weeks) or those who have only been on a Gluten free diet for 2 weeks or less. "If the person meets our enrollment criteria, they will be enrolled in one of two 8 week Mind/Body medicine courses, free of charge."
Dr. Sohi is optimistic that this study will have a positive impact on Mind/Body medicine and represent a new tool in the treatment of patients with celiac disease.
For more information about the study, please contact Rush University Medical Center at 312-942-1551
The story is accompanied by several gluten-free recipes:
The Best in Health,
- By Wendy Cohan
- Published 06/11/2009
- By Amy Leger
- Published 06/9/2009
Ida our 17, turned 18-year-old, exchange student from Norway will be leaving us in 9 days. As I look back the year has gone by so fast. It has been a year of growing in the celiac lifestyle - with a teenager who doesn’t need me hovering over her all the time. Although not to say she couldn’t have used it once in a while.
I introduced you to Ida in one of my first posts back in November. I explained how we were blessed with her presence for the school year and about some of the challenges we faced, including with school lunches. As the year has gone on, you’ve heard about prom, a pizza party for her birthday, planning a trip to Hawaii, and Ida’s first Thanksgiving dinner (never had pie before).
But besides that I do feel like I’ve learned more about managing a teenager with celiac disease. While this may be old hat for some veterans, I thought I would let you know what I found:
- Save your pennies for the teen years! The older they are the more they eat! Even my trim Norwegian teen went through a lot of gluten-free food! Way more than what I’m used to.
- They don’t want to be a bother when they’re at a friend’s house. Ida humored me when I’d ask her what she’s eating at her friend’s house and I would send food along or get more information from a parent. I’m sure when it’s Emma’s turn I’ll get an eye roll or a sing-songy “Mooom!”
- Try to prep them for restaurants. Teach them to do research on line. Empower them to be strong enough to recommend a gluten-free friendly place to their friends and then hope and pray they follow through.
- Teach them kitchen etiquette that will keep their food gluten-free; AKA don’t put your gluten-free bread on the counter next to the toaster that’s designated for regular bread (and bread crumbs)! A few paper towels will keep your food prep nice and gluten-free!
What has she learned? I would say her overall take is the gluten-free world in America is not even close to being the same as in Norway.
- She can get McDonald's cheeseburgers on a gluten-free bun in Norway, but not in the USA. Ida says thee gluten-free buns are “really good”. Ahem..Isn’t McDonald’s an American company? Please don’t tell me someone at the headquarters in Oak Brook, Illinois is ordering gluten-free buns for Europe and not here!
- All pizza places have gluten-free options in Norway but not here. She says they have to because so many people in Norway have celiac.
- And other just-because-it’s-gluten-free-in-Norway-doesn’t-mean-it-is-here cases. Case in point: Airheads Extreme candy. Regular Airheads appear to be gluten-free as of this post. But one day we were talking in the kitchen and she was eating Airheads Extreme Rolls. Emma had never even seen these before let alone tried them. She said “Are those gluten-free?” Ida replied, “I think so, I can eat them in Norway.” But sure enough on the back in bold letters - Wheat flour.
I am sure one of the things she’s looking forward to in going back is enjoying the food that is known and she hasn’t had in a year. However, I’ve had the pleasure to make her first Juicy Lucys, pies, Thanksgiving dinner, pasta with cream sauce, baked beans, just to name a few. She was a good sport and while she didn’t love the cream sauce, everything else she either really liked or tolerated. Hopefully she’ll bring some of these things she’s learned home with her.
In the meantime, I’ve had a look into what my future holds for my daughter with celiac. I am feeling at least a bit more prepared than a year ago at this time.
- By Hallie Davis
- Published 06/8/2009
Barbara O. Schneeman, Director
Office of Nutrition, Labeling and Dietary Supplements
Center for Food Safety and Applied Nutrition
Harvey W. Wiley Building HS820
5100 Paint Branch Parkway
College Park, MD 20740-3835
Ref: Docket No. FDA-2008-P-0509-0001/CP
Dear Dr. Schneeman:
Thank you for your letter dated May 28, 2009 concerning the above docket number, to amend the FFD&C Act. I was not aware that only Congress can amend this act. However, they have done so before and surely can again. So my question to you is: Is there someone else I need to write to in order to get action on this? My congressmen perhaps? Is there a separate petition to Congress that I need to make? Or can you get this subitted to Congress yourselves? What is the next necessary step?
In the meantime, please hold this petition open for continuing comments. I did not see this petition posted in the online database until after I requested status on it, which was just over 6 months after I had sent it to you. Then I was told that somehow it had not gotten into the database, and that was rectified at that time. However by then the official date for comments had passed. I do see that some people are now beginning to see it in the database and are beginning to leave positive comments on it. I want you to permit people to continue to comment on it under the circumstances.
Shopping for safe foods for the celiac diet will continue to be filled with peril until Congress amends this act to include rye and barley in the FFD&C Act. Please let me know what I can do to press this action forward.
Hallie J. Davis
- By Hallie Davis
- Published 05/22/2009
It has recently come to my attention that my petition did not actually get into the FDA's database until after the supposed closing date for comments. But it's not a real closing date; you can still post your comments and they will be considered. So please do so! The petition is at
http://www.regulations.gov/fdmspublic/component/main?main=DocketDetail&d=FDA-2008-P-0509. As you can see, Bonny Cancino and Kim Hopkins were able to leave comments as late as this month. Please, FDA needs many more comments in order to take this petition seriously. Please add your vote for this petition by leaving a comment. And remember to hit the submit button at the very end of your comment, or it won't actually get posted. Then there will apparently be a delay before it actually shows up. I'm not sure how long. But if it doesn't show up in about a week, re-post it, please!
- By Amy Leger
- Published 05/15/2009
On this Mother’s Day, I found myself thinking back to all those times during Emma’s illness, subsequent celiac diagnosis and eventual permanent lifestyle change where the Mom really came out in me, both quietly and ferociously.
Here’s my list starting with before diagnosis and goes chronologically from there - maybe you can relate:
- Before diagnosis, wondering why my daughter, celebrating her first birthday, refused to eat cake and threw a tantrum.
- Looking at my 1-year-old daughter with skinny legs, bloated tummy, and crabby disposition and wondering - is this the way the next 17 years will be.
- Questioning doctors about why my daughter throws up so much and has such a big belly - I was treated like I was an overprotective mom who knew nothing.
- Cleaning up vomit on the carpet, on clothes, in the kitchen, in bed, on the wall, on stuffed animals, etc.
- Leaving work early and in tears because something was wrong with my daughter and no one knew what it was.
- Feeling the best relief ever when a gastroenterologist confirmed our doctor’s eventual diagnosis of celiac disase - just by looking at her. Solidifying the fact that we weren’t crazy!
- Getting up at 4:30 a.m. to fix 16-month-old Emma breakfast at the latest acceptable moment because she couldn’t eat for 8 hours before her endoscopy and biopsy.
- My eyes welling up in tears as the anesthesiologist put the mask on my daughter to put her “under” for the biopsy. She was fighting and crying and then her whole body went limp.
- Panicking at our local grocery store, as I looked for gluten-free food for the first time. I only came home with eggs, Cheetos and Corn Pops (which now are no longer gluten-free).
- Being so happy that my husband had gotten me a bread maker for Christmas the year before; a gift my male co-workers thought was so dumb, ended up being such a blessing so I could make gluten-free bread.
- Feeling the joy after only 7 days on the gluten-free diet, Emma was a completely different child. Happy and no longer sickly.
- Being frustrated because I had to convince many friends and family that celiac is a lifetime disease and her diet had to be taken seriously.
- Grieving the loss of “normalcy”.
- Being relieved after finding other parents who had recently started a celiac support group. We all came together and eventually started planning our annual fundraiser: Making Tracks for Celiacs.
- Being nervous about sending Emma to Kindergarten, but pleased we found one hot lunch she could take: Tacos!
- Celebrating victory when she ate tacos for the first time at school and they were “awesome!”
- Feeling bad when I had to tell her that tacos were no longer available on the menu.
- Making 3+ years of daily cold lunches for school.
- Feeling victorious when our school found gluten-free food options for Emma, which led to a gluten-free menu!
- Feeling strong enough as a mom of a celiac child, that we took in Ida, an exchange student with celiac; I started this blog; and I am teaching an occasional gluten-free class.
Now that’s a great mom! Happy Mother’s Day!
I was diagnosed with celiac disease in Brussels, Belgium when I was about 6 years.
My family ensured that all my meals were gluten-free. However, now that I am all grown up it has changed. There exists no gluten-free food here in East Africa. The little that comes from South Africa is unusually expensive. Worse, my doctors do not believe an African can get celiac disease!
What do you think?