I sent a petition to include rye and barley and their derivatives in the list of Common Allergens that require disclosure in labeling. The following letter was sent by me today in response to one received from Barbara Schneeman at the FDA:

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.

Sincerely,
Hallie J. Davis

You may have recently seen my blog asking for comments on my FDA petition to have FDA add rye and barley to the list of most common allergens that require disclosure on food labeling. The fact that FDA added wheat to that list without adding rye and barley is total idiocy, for as we know we are all just as allergic to the gluten of rye and barley as we are to wheat, and the omission of rye and barley causes great difficulty when shopping for food.

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!

Yes, it would have been more appropriate to celebrate Mother’s Day with this post, but ironically (or is it coincidentally) the job of being a mom has really prevented me from preparing this post before now.

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:

I remember...

1. Before diagnosis, wondering why my daughter, celebrating her first birthday, refused to eat cake and threw a tantrum.
2. 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.
3. 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.
4. Cleaning up vomit on the carpet, on clothes, in the kitchen, in bed, on the wall, on stuffed animals, etc.
5. Leaving work early and in tears because something was wrong with my daughter and no one knew what it was.
6. 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!
7. 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.
8. 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.
9. 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).
10. 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.
11. Feeling the joy after only 7 days on the gluten-free diet, Emma was a completely different child. Happy and no longer sickly.
12. 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.
13. Grieving the loss of “normalcy”.
14. 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.

Fast forward to 4 years later….

1. Being nervous about sending Emma to Kindergarten, but pleased we found one hot lunch she could take: Tacos!
2. Celebrating victory when she ate tacos for the first time at school and they were “awesome!”
3. Feeling bad when I had to tell her that tacos were no longer available on the menu.
4. Making 3+ years of daily cold lunches for school.
5. Feeling victorious when our school found gluten-free food options for Emma, which led to a gluten-free menu!
6. 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.
   

If you’re reading this as a mom of a child newly diagnosed with celiac, you may be able to relate to just a few things in this post — but that will likely change. As time goes on, the overwhelming shock of the diagnosis and diet will subside. With education and support you will feel stronger, more confident and ready to not only ensure your son or daughter is getting the right foods, but that you’re empowering them with the same tools to manage this gluten-free lifestyle on their own.

Now that’s a great mom! Happy Mother’s Day!

Let me introduce myself. My name is Lionel Mugema. I was born in a small hospital in Kigali, Rwanda in the month of June in 1981. My mother tells me mine was a C-section birth and she wanted to name me Caesar.

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?

You deserve a break today! You just might not be getting it at a fast food restaurant. Most fast food places are very slow in getting the gluten-free picture, while some are slowly coming around. Following is a list of some fast food joints and their allergen info. Feel free to contact the individual restaurants for more info, and to bug them about providing gluten free items.

Arby’s:
http://www.arbys.com/nutrition/printable.php?type=allergens
Arby’s is great about packaging the roast beef in a plastic container, rather than placing it on a bun. The curly fries have gluten, but the potato cakes seem to be gluten-free.

Burger King:
Very few gluten-free items.
http://www.bk.com/#menu=3,2,-1

Carls Jr.:
http://www.carlsjr.com/content/downloads/CJAllergenChart_03-30-09.pdf
There are a couple of things here:
The Six Dollar Lo Carb Burger
Regular & Chili Fries

In-N-Out:
Very gluten-free friendly… you can get any burger "Protein Style" or wrapped in lettuce instead of serving it on a bun. Protein Style is listed in their "Secret Menu" Also their French fries are made fresh from potatoes that were washed, peeled and cooked minutes before they are served to you.

Jack in the Box:
http://www.jackinthebox.com/pdf/Ingredients.pdf
Not much here.

KFC (Kentucky Fried Chicken):
http://www.kfc.com/nutrition/pdf/kfc_allergens_april09.pdf
Not a whole lot here, either, although a few sides a gluten-free.


McDonald's:
McDonald’s offers Allergen info on their website:
http://nutrition.mcdonalds.com/nutritionexchange/nutrition_ingredients.html
There is very little there that is gluten-free—even their fries and hash browns contain wheat! The salads seem safe, just watch out for the dressings. Most of the ice cream products look safe, too. Always check before you dine, though.

Sonic:
http://www.sonicdrivein.com/pdfs/menu/Sonic_Allergen_Table_9-30-08.pdf
There are quite a few choices on this menu, like fries and tots; just order your burger bunless.

Subway:
http://subway.com/subwayroot/MenuNutrition/Nutrition/pdf/AllergenChart.pdf
According to the chart, the following salads are gluten-free:
Chicken & Bacon Ranch (includes cheese)
Cold Cut Combo
Ham (Black Forest)
Italian BMT®
Roast Beef
Roasted Chicken Breast
Tuna
Turkey Breast
Turkey Breast & Ham
Spicy Italian
Subway Club®
Subway Club®
Veggie Delite®

Taco Bell:
http://www.tacobell.com/nutrition/food-allergens-and-sensitivities/
According to Taco Bell's Allergen chart only three things on the menu are gluten free.
Side of Rice
Side of Pinto Beans and Cheese
Tostada


Wendy's:
Wonderful Wendy’s has their own gluten-free list!
http://www.wendys.com/food/pdf/us/gluten_free_list.pdf
All of their hamburgers can be ordered bunless. They serve croutons packaged on the side of their salads, so you don’t have to pick them out. The baked potatoes and chili are gluten free.

Very few people have the star power that Elisabeth Hasselbeck of ABC's The View commands, and among those who do have it even fewer put this power to positive use. Over the past two days Elisabeth has openly discussed celiac disease and the gluten-free diet extensively on ABC's The View, and on CNN's Larry King Live.

Elisabeth's appearances are timed to promote her new book: The G-Free Diet: A Gluten-Free Survival Guide, which is now a national best seller.

I have no doubt that millions of people who have never heard of celiac disease or the gluten-free diet will be made aware of both due to her promotional efforts, and this will lead to thousands of people getting diagnosed and treated—many who might otherwise have never discovered their problem—or discovered it too late.

I encourage everyone to support Elisabeth's decision to publicize her condition by buying a copy of her book.

I would also like to personally thank her for not doing what many stars with such a condition might do—hide from it. Thank you for hitting your problem head on—and for being brave enough to hit a home run on The View and Larry King Live!

After I wrote that last blog entry, I went to my local Giant Food store and there on the shelf was a box of Corn Chex marked "Gluten-free"!  So distribution is ahead of schedule!

Probably all of you know that General Mills has reformulated Rice Chex to make it gluten-free. The new and wonderful news was that this apparently turned out profitable enough that they are now in the process of reformulating other Chex cereals. Here is the letter from them that I received today:

Dear Valued Consumer:
 
Thank you for contacting General Mills regarding Rice Chex cereal.  We appreciate the time you have taken to share your positive feedback with us.  We will be very happy to pass on your comments to the product team.
 
We are committed to creating the highest quality products for our consumers.  Feedback such as yours helps us achieve this goal for the future. General Mills is reformulating the following Big G Cereals to gluten free status: We appreciate your loyalty and hope you continue to enjoy our products:

• Corn Chex
• Honey Nut Chex
• Strawberry Chex
• Chocolate Chex
• Cinnamon Chex
  

All 5 products should be widely available across the U.S. by June 1, 2009.  As with all reformulated products, both products may be on store shelves at the same time so we encourage our consumers to read labels/packaging carefully.   To ensure that the cereal inside the box is in fact the new, gluten free product.   Look for “NOW GLUTEN FREE” or “GLUTEN FREE” on the front/side/back panels. 

Sincerely,
Amy Sadowski
Consumer Services

I caught a spot on Oprah today with the actor Michael J. Fox discussing his battle with the neurological symptoms of Parkinson's Disease. He's always been an engaging persona, and I enjoyed the segment. As a nurse, I've always had a strong interest in neurological disorders, and have done a lot of reading on the links between Celiac disease and neurological disorders, especially gluten ataxia. At this point, Michael's symptoms are very noticeable and greatly affect the day-to-day activities of his life. Toward the end of the segment, he related that many of his symptoms "mysteriously disappeared" on a recent trip to the Himalayan kingdom of Bhutan. Dr. Mahmet Oz, Oprah's frequent medical spokesman, was also a guest on the show, and was tossing out ideas of why this might be, everything from "they eat a lot of chili's" to the benefits of high altitude, or on medications that Michael took to help with adapting to the altitude. But, I grew very excited by the prospect that Michael J. Fox's improvement was a response to, however accidental, a gluten-free diet! Because, I knew from personal experience that the diet in this part of Asia is largely based on daily consumption of dhalbhat, or rice and dahl (small yellow lentils). Fresh vegetables are rare at high altitudes, but the diet is supplemented by occasional meat, except in some strict Bhuddist or Hindu areas. In 1980 I lived in a neighboring small kingdom of Nepal, and ate almost exclusively a diet of rice, dhal, some vegetables, and occasional sheep or goat meat. Dates, peanut butter, and raisins rounded out our diet, washed down with copious amounts of chai tea, made with black tea and canned evaporated milk. Granted that I also was exercising vigorously much of the time, but looking back, this was when I was at the healthiest, strongest, and most vital in my entire life. Unbeknownst to me, my travels had excluded gluten from my diet for nearly six months. Upon my return to the U.S., and binging on all my favorite gluten-laden foods, I suffered severe intestinal distress, lasting nearly two years. Of course, at the time, both my doctors and I attributed all of my gastrointestinal symptoms to parasites, bacterial infections, and other health problems common to returning travelers. It was decades later that I was diagnosed with a gluten problem, and finally began to recover my health. So, back to the possibility of excluding gluten from the diet having a beneficial effect on Parkinson's, or a possible link between Parkinson's and celiac disease or gluten intolerance, I have to say that I haven't found much evidence. But, that doesn't mean I believe the link doesn't exist. There are many established links between other neurological disorders and neurological symptoms and the consumption of gluten in sensitive individuals. What I would love to see now is readers responding to this blog, or sending me an email, sharing personal stories, links to articles, etc. on this topic.

Hi All,
Back in September of 2008, I submitted a petition to FDA to include rye and barley in the list of most common allergens which must be disclosed on packaging. Right now, only wheat has to be disclosed, but as we all know the gluten of rye and barley is just as offensive to celiacs as that of wheat. So to include wheat in the list, without including rye and barley was nonsensical. The list needs to be amended so that rye and barley sources are also disclosed.

Without this disclosure, such things as "modified food starch", "flavor," "natural flavor" and other ambiguous ingredients may be derived from rye or barley without disclosure. This means that currently we cannot buy or eat anything with such "ambiguous" ingredients without a great deal of risk. My petition is now available to be seen and publicly commented upon at:
http://www.regulations.gov/fdmspublic/component/main?main=DocketDetail&d=FDA-2008-P-0509.

I hope you will go there, and read my petition, and leave a comment in favor of it for the FDA's consideration. The more positive comments we get stored in FDA's database, the sooner we are likely to get action on this.