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Gluten-Free Petition to Disclose Rye and Barley on Food Ingredient Labels

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.

Hallie J. Davis

As always, welcomes your comments (see below).

Spread The Word

1 Response:

Toby Shubert

said this on
16 Oct 2009 2:05:05 PM PDT
Thanks Hallie for your Key West info...we live in Islamorada and love to go to Key West for dinner or overnight. All your info will be helpful to me as a fellow Celiac!

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All Activity Celiac Disease & Gluten-Free Diet Forum - All Activity

Have been dealing with splinter hemorrhages on three of my toe nails since February. I did go to my doctor who rightly so did a very complete blood work-up ruling out other diseases such as lupus and RA and referred me to several other doctors to make sure that it was not cancer, endocarditis, or something serious. I went to the doctors. I have done some research on vitamin deficiency and it seems that some link splinter hemorrhages to vitamin C deficiency. For the past 2 1/2 weeks I have been eating 3 clementines a day (in addition to the usual multivitamin that I take) and it seems to be helping the splinter hemorrhages. One has grown out and not returned. Visited my GI doctor today and talked about malabsorption of nutrients as a potential issue. We are doing more blood work and checking nutrient levels. I have to believe it has something to do with the celiac. Sorry I don't have a better answer, but like you am trying to figure this out. Please let me know if you find any answers, and yes, be sure to check with your doctor to rule out anything serious.

You only need one positive on the celiac panel. I tested positive only to the DGP IgA and had a Marsh Stage IIIB intestinal damage. Good luck!

Welcome to the forum. First, you need to get copies of your celiac test to confirm you actually had it done and what the results were. Second, to confirm a diagnosis, you must obtain biopsies via an endoscopy. Were the doctors gastroenterologists? Third you need to research celiac disease. Yes, you can be asymptomatic, but could still have instestinal damage as the small intestine is vast. here is a good place to start: You might think you are a silent celiac, but ever been anemic? Had your bones checked?

That's good to know about Texas Children's, unfortunately I don't believe they accept our insurance. Our former pediatrician joined with one of their medical groups and we had to find a new one due to insurance. I'll check out their site though.

9 months ago I went to my doctor for normal blood work. She called me to tell me everything looked great, but o yeah, my gluten sensitivity levels were extremely high. I should probably stop eating gluten since it looks like I have celiac. She hung up and I never heard from her again. I cut out gluten completely, even though I have never experienced one single symptom of celiac. 9 months later, I decided to reach out to another doctor to get a second opinion, as I experienced absolutely zero change on 9 months of strict gluten free diet. All this doctor did was request the results from the previous doctor, tell me it is confirmed I have celiac, and hung up the phone. This angers me tremendously on two counts. One, I have absolutely zero symptoms of celiac, and would NEVER know if I was "glutened". Two, the complete lack of information or support from both doctors is horrifying to me. And finally, I simply do not believe the diagnosis and as considering just starting to eat a normal diet again. I would never know the difference. I am really just venting because this situation upsets me so much, and I have suffered mentally and socially from going gluten free. Since I have absolutely zero symptoms, even if I was actually celiac, I highly doubt anything would ever come of it if I continued to eat gluten. I could just pretend I never heard from either terrible doctor and go on living my life. Someone has to have been in the same situation as me, right?