Though I know it sounds like I'm complaining, I just wonder how do you go about repeatedly telling a person what you can and cannot eat with out getting so frustrated every time? The worst is when you have to go through a fast food place and they look at you like your crazy because you say "Sorry there is nothing for me to eat here!." I guess Celiac disease has more to it then not only being able to eat much! Frustration...
- By Amy Leger
- Published 12/28/2009
It has been a busy decade for celiac disease. I even think non-celiacs would agree we heard more about celiac disease and the gluten-free diet in the last 10 years than ever before! Including me. We had it in our family for 40 years before I had any idea this disease even existed – with my daughter Emma’s diagnosis in 2000.
With the end of the decade now just days away, I got to wondering what were some of the more significant moments that had an impact on celiac disease. While I certainly have my own thoughts on this, I felt like this needed responses from the greater celiac community.
And you delivered! Starting on December 16th, I opened the unscientific survey asking “What do you think has had the greatest impact on the celiac community in the last ten years?” 94 people responded with their top three answers to my survey which closed on December 27th. Your answers and comments are very interesting. So here are two of the top three vote-getters…
3rd choice for top impact on the celiac community in the last decade: More selection at restaurants
61 percent of respondents chose dining out as their third choice in this survey. It is true. This boom has made eating out with celiac disease so much easier! Really with the exception of Outback Steakhouse’s nationwide gluten-free menu (it’s had the gluten-free menu for as long as I can remember), most other restaurants didn’t even venture into the gluten-free options until about 2006.
Then with the advent of the websites like glutenfreeregistry.com, celiachandbook.com, glutenfreeonthego.com and glutenfreetravelsite.com we all are now able to go on long-distance trips (or even just a local date-night) and have a starting point with which to find a gluten-free meal at a restaurant. One respondent commented, “Awareness at restaurants and with chefs has grown quite a bit. Gluten-free menus are a great way to start a conversation at the table and show others that it can be easy to fulfill a ‘special needs’ diet.” A parent reflected on the change in the last ten years…including finding a place “where we can go to eat out and eat safely.”
Admittedly, there is work to be done. While some restaurants really have a solid understanding of the diet and cross contamination issues, others do not. But in an interview I did with Sheila Weiss the National Restaurant Association consultant on food and nutrition policy earlier this year, she mentioned the interest restaurateurs and chefs have in pleasing patrons with special requests. “We strongly encourage customers to explain their food intolerances to their server so that the appropriate staff member can be notified in order to accommodate the special requests. Restaurants are happy to work with the customer to find menu items that work for a gluten-intolerant guest,” Weiss said. “The lines of communication are very important so that a restaurant can ensure a safe meal for their food-intolerant guest from start to finish. This personalized attention is of utmost importance to all parties involved.”
2nd choice for top impact on the celiac community in the last decade:
A tie: celebrities with ties to celiac and blogging/social networking
Respondents chose these two categories for their #2 selection 50% of the time in the survey.
Celebrities with ties to celiac disease started with Rich Gannon who was an NFL quarterback when his daughter Danielle was diagnosed with celiac disease. He and his wife Shelley have been very active in raising awareness over the last decade. Most recently the additions of Heidi Collins (CNN anchor) and Elisabeth Hasselbeck (The View co-host and author of The G-Free Diet) have really added to the awareness. In some cases it seems too bad that it takes a public figure to get people interested in a cause, but it has helped here. I am thankful that they’ve used their celebrity to bring awareness to this cause.
Blogging and social networking about celiac disease seems to be the current equivalent to a support group. It is so easy to throw a question on Twitter and get several responses within a few hours (or even minutes). I believe bloggers have made people with this disease not feel so isolated not just because there are many out there, but many of the stories they are telling are very relatable.
One respondent acknowledged the importance of bloggers and social networking, but that person worries that most of the impact has been negative. “[Blogs] allow all the kooks and nutcases free rein to promulgate their belief systems as if they were backed by solid scientific research.” This is an area in which readers need to be careful. I hope that when people start searching for celiac-related blogs, they can eventually deduce which ones are right for them. Some blogs only focus on gluten-free cooking, others are more about the celiac lifestyle. This blog, thesavvyceliac.com, is about education, research and lifestyle. Either way there must be hundreds of us out there…I would like to think that we are all trying to achieve one goal – raising awareness as accurately and honestly as we can.
The top spot will be posted on Tuesday!
- By Amy Leger
- Published 12/8/2009
For years I’ve only purchased big brand names of ibuprofen and cough/cold medicine for my gluten-free daughter, because I couldn’t guarantee the generic, store brand version sitting right next to the big name brand (and about a third less in cost) was gluten-free. Now it appears that’s about to change — in a bold way.
In a news release Monday, the Perrigo company says it will begin labeling gluten-free products appropriately beginning in January of 2010! Wow! Those Sunday 2:00 a.m. trips to my local 24-hour drug or grocery store looking for a pain reliever for my feverish child may not be so bad. Now I’ll actually be able to find out a medicine’s gluten-free status — right there in aisle 9! “Now, consumers will be able to identify whether a Perrigo-supplied product is “gluten-free” simply by reading the product label,” the Perrigo news release said.
Perrigo is the “world’s largest manufacturer of OTC [over-the-counter] pharmaceutical products for the store brand market.” It certainly is showing it’s progressive side by not only adding the gluten-free label, but also putting together a plan to ensure gluten-free claim on the medicines is true; which is a bit reassuring:
“To support the gluten-free labeling initiative, Perrigo has instituted a gluten-free assurance program. Perrigo’s program is based on the acceptable thresholds of gluten (less than 20 parts per million) identified by the FDA for the food industry. It is comprised of a gluten testing methodology for raw materials and products, as well as ongoing quality assurance for ingredient and formula changes.”
The Perrigo website doesn’t list which companies it prepares store-brand OTC medicines for, but it did briefly make mention of WalMart, Walgreens and Kroger as big name examples on one of the company’s web pages. So you’ll want to keep your eyes peeled at your local store.
But in the meantime, this appears to be the list of generics they create. I can’t wait to check them out!
Here's the letter I got back from them:
Hallie, thanks for your note. Our QC folks followed up with our flavorings supplier, and our flavorings do not contain rye, barley or any of their derivatives.
Thanks for contacting us.
Mt. Olive Pickle Company, Inc.
Corner of Cucumber & Vine
One Cucumber Boulevard / P.O. Box 609
Mount Olive, NC 28365
800.672.5041, ext. 3628
So I will continue enjoying the Mt. Olive Pickles!
- By Scott Adams
- Published 11/16/2009
Apparently the lawsuit was dismissed after Hassett’s attorney, Richard Cunha, failed to file certain paperwork in a timely manner.
According to Bostonherald.com:
"It’s unclear why Hassett didn’t pursue the case. Her lawyer, Richard Cunha of Swansea, yesterday told the Herald, 'I can talk about that,' then hung up the phone."Just for the record I never received a response from Hassett (I emailed her directly) regarding her book's use of my site's Safe & Forbidden Lists page from May 30, 1997. She used an almost identical copy of my copyrighted list without permission or proper citation. I asked that she correct this in future editions of her book, but she has ignored my request.
Judge tosses plagiarism suit vs. “View” star Elisabeth Hasselbeck
- By Wendy Cohan
- Published 10/5/2009
My thing is I have been getting very nauseous for about a month now. My GI doc thinks it is because I still have gluten in my system (the number being 10 still). Prior to being diagnosed nausea wasn't the problem. It was bloating, cramps, bowel issues, migraines (side note: migraines are gone!). But now I am nauseous daily. I had bloodwork and an ultrasound done for gall stones, liver and pancreas and all was fine. It doesn't seem to matter what I eat. It is usually after lunch, and I normally eat salad, meat and veggies, banana and almonds. Today I had no lunch and had coffee with milk and I suffering bad with nausea, sweating and headaches. I don't seem to have trouble with milk but maybe I do.
I am just wondering what other celiacs would have to say. I am committed to doing this, I just wish I would start feeling better. Any advice is appreciated.
It has been sometime since I have checked in and for that I apologize. The gluten-free diet is going well but a little boring. I did discover a new product (well new to me). I was shopping at my local Redners a few weeks back. I was picking up the cookies my hubby likes. upon my arrival I noticed 2 men standing right in front of my (LOL) gluten free section of the aisle. I say mine because I never see anyone else standing there. I became very curious as to why they were there. As it turned out, Redners was increasing their line of gluten-free items and in doing so now carries Dr. Schar Products. I spoke at length to the sales rep. The company is European and he informed me that across the pond they are more concerned than the US in getting this stuff to taste good. I was very excited. The pasta was fantastic and my hubby loves the shortbread cookies. Check it out and let me know if you try any of the other products. Happy Eating!
- 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!