Lisa

Below please read the recommendations from the American Celiac Disease Association, as the comment period ends today (October 3, 2011) to the FDA, regarding the proposed Gluten Free Labeling legislation.

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Conclusion

There is no medical intervention for the treatment of celiac disease, no drug, no ongoing

therapy. The treatment, while medically prescribed, is self-administered and in many

instances without medical oversight. Gluten-free foods, in all forms, are the equivalent

of a prescription medication used to manage another lifelong, chronic condition. The

laws differ dramatically with regard to the labeling, and manufacturing between drugs

and foods, and we do not imply the two should be equal.

We do however, implore the FDA to consider the following: it takes an individual, on

average, six years of being ill, of bouncing from doctor to doctor before being properly

diagnosed with celiac disease. Gluten-free foods don’t undergo years of safety testing

before going on the market, like medications. Each and every day, celiac consumers

are placed at risk when trying to determine if the foods intended to maintain their health

are safe. They have only the clarity and accuracy of the labeling on which to rely. It is a

heavy burden, but one that will be eased dramatically with the completion of this

rulemaking.

FDA Deputy Commissioner for Food, Mike Taylor, stated in the teleconference to

stakeholders announcing the reopening of this NPRM, and in the press, that the agency

‘must get this right.’ We cannot agree more and believe that reflecting on the experience

of other countries, the FDA can determine the approach to gluten-free labeling which

best protects and works for the American celiac consumer.

Again, we appreciate the opportunity to comment on these proposed rules and look

forward to working with the FDA to ensure their timely and smooth implementation once

finalized in the third quarter of next year.

Respectfully,

Andrea

Levario,

J.D.

Executive Director

American Celiac Disease Alliance

2504 Duxbury Place

Alexandria, VA 22308

info@americanceliac.org

www.americanceliac.org

703.622.3331

Do you have a moisture issue with your cornbread dressing? gluten-free breads tend to stay moister, IMO.

Yes, you need to make it pretty mushy with chicken broth or other liquids, before it goes into the bird or oven.

My son met with the Ped. GI doctor that specializes in celiac disease at Children's Hospital in Milwaukee last week. I asked the nurse how many biopsies would be taken during his endoscopy in December and she said 8...then she said...2 in the esophagus, 4 in the stomach and 2 in the lower intestines. Shouldn't it be more in the intestines...and why so many in the stomach. My son wasn't even having stomach issues that brought him in...he was having muscle pain and mouth sores...and constipation (which came be full force and worse once gluten was added back into his diet last week). I go back on Friday to an appointment with him again...so we can set up an endoscopy for my 18 yr old daughter. She started college and is having a heck of a time with all the gluten foods in the cafeteria and is ready to be tested. Should I inquire about them doing more than just 2 biopsies of the small intestine? Why would they do so many in the stomach and the esophagus when the complaints aren't there. Should I insist they do more than 2?

Yes, I should think so. But the other samples will be considered for other issues, or to rule them out.

Oops, I almost forgot about the gravy! How the heck do you make gluten-free gravy!?!

Gravy is the most easy...use corn starch (or rice flour if you have issues with corn) to thicken in the turkey drippings. Still just as good!

I usually prepare corn bread dressing, or use some other gluten free breads. Once you put all the seasoning and 'stuff' ...it's just as good (and no one will notice)

noglutenforme:

You threw out some outrageous claims. In order to support your post, you need to post substantiated studies to support your claims....might help your argument.

I ate some gluten-free Lays at my FIL's this week. Knew better (cc from gluteny hands in the bag, etc.). Within 30 minutes I wanted to hurl. Won't do that again.

If you are having thowing-up issues (or hurling ) , you might have another intolerance. Many people have has issues with Potato chips and not necessarily related to gluten. You might look into soy or canola.

Pasted from a MedWeb reference. You have options.

High-in-Iron Food Sources

Very good sources of heme iron, with 3.5 milligrams or more per serving, include:

* 3 ounces of beef or chicken liver

* 3 ounces of clams or mollusks

* 3 ounces of oysters

Good sources of heme iron, with 2.1 milligrams or more per serving, include:

* 3 ounces of cooked beef

* 3 ounces of canned sardines, canned in oil

* 3 ounces of cooked turkey

Other sources of heme iron, with 0.7 milligrams or more per serving, include:

* 3 ounces of chicken

* 3 ounces of halibut, haddock, perch, salmon, or tuna

* 3 ounces of ham

* 3 ounces of veal

Iron in plant foods such as lentils, beans, and spinach is nonheme iron. This is the form of iron added to iron-enriched and iron-fortified foods. Our bodies are less efficient at absorbing nonheme iron, but most dietary iron is nonheme iron.

Very good sources of nonheme iron, with 3.5 milligrams or more per serving, include:

* Breakfast cereals enriched with iron

* One cup of cooked beans

* One-half cup of tofu

* 1 ounce of pumpkin, sesame, or squash seeds

Good sources of nonheme iron, with 2.1 milligrams or more per serving, include:

* One-half cup of canned lima beans, red kidney beans, chickpeas, or split peas

* One cup of dried apricots

* One medium baked potato

* One medium stalk of broccoli

* One cup of cooked enriched egg noodles

* One-fourth cup of wheat germ

Other sources of nonheme iron, with 0.7 milligrams or more, include:

* 1 ounce of peanuts, pecans, walnuts, pistachios, roasted almonds, roasted cashews, or sunflower seeds

* One-half cup of dried seedless raisins, peaches, or prunes

* One cup of spinach

* One medium green pepper

* One cup of pasta

* One slice of bread, pumpernickel bagel, or bran muffin

* One cup of rice

I am perusing "The Gluten-Free Bible" and it indicates that a gluten-free person cannot have "alcoholic beverages made from cereal grains such as whiskey, vodka, gin ..." Is that accurate?

NOPE! One of the many inaccuracies in that book.

All distilled alcohol beverages are considered gluten free, regardless of the source.

(although there are some here that may be sensitive to the grains in the alcohol - but generally it's accepted to be safe for most Celiac)

https://www.celiac.com/celiac-disease/gluten-free-alcoholic-beverages-r218/

There's a Lyme thread somewhere in this board with tons of info. Search for it.

Good luck!

Here it is:

It's several years old, but I feel still relevant. Feel free to PM the members in this thread. They would be glad to speak to you !

Ok, took my first iron supplement today. Now I want to hurl. It's Solgar Gentle Iron 25 mg - gluten free.

I read they can make you queasy but this is GROSS. I honestly just want to puke and get it over with. I can't take it at night because I can't take it with calcium and that's when I take my cal/mag and quite honestly I don't know if it would solve the problem.

Anyone else get sick from iron??? Does it go away???

I'd volunteer for the iron shots now. Seriously.

Yeah...many people have a difficult time with iron. Gives me the "ickies" just thinking about it. Can you substitute the pills for iron rich foods?

Anyone know if Hunt's diced tomatoes with sweet onion is gluten free? I don't see anything on the label to be concerned about but thought I would ask if someone knew for sure.

Yes, it's gluten free. If it's not on the ingredients listing...it's not in there.

Fortunately, the supersensitives are a small percentage of celiacs. Most posters on here can eat foods that do not have any gluten ingredients, can drink distilled spirits, can safely eat out at restaurants with appropriate precautions. So I would say, do what a normally prudent celiac would do and don't go looking for problems that may not exist.. For peace of mind, after six months have the celiac test run again, and you will find out how well you are doing. If your antibodies are still high you will know you have to be stricter. If they have dropped down to normal or are much lower (some people take longer than 6 months to get to normal levels) you will know you are on the right path. You can then check again in 6 months to make sure you are doing what you should be.

Great reply, good advise.

After three or four months gluten free, I still had immediate issues. I cut out dairy products and it resolved. A couple of months later, no issues.

All is great and wonderful.

I do have leaky gut. I just wasn't sure if tomatoes could be doing any harm even if they aren't producing symptoms. Some people make it sound as though you absolutely have to avoid nightshades.

We all vary so much in issues that there is NO common denominator. Listen to your body...that's the best indicator.

I'm really interested in reading some of these responses. I have come to the realization that I have to be super strict now. On Sunday, I was glutened at the pumpkin patch of all places. My neices and I were unknowingly playing in the "hay" wheat straw maze.

I am giving up all processed gluten free products b/c I really tend to overeat these and it all adds up and I get glutened.

So to answer your question..Not very long for me. A month or so. At that time, I start feeling good so I start missing all of the gluteny foods that I use to have and go buy something gluten free..like cookies..eat the whole entire box in one sitting and get zapped. It's a vicious cycle for me.

I'm going to start living by a nothing out of a box/bag policy.

If I ate a whole box of gluten free cookies, I would expect to feel like "Horse Pucky"! Not from gluten, but from over consumption.

Although this is a Super Sensitive Thread, it's important to note that most, if not all gluten free products are safely consumed by the general Celiac community.

I cant seem to find anything to use for my chapped lips. It either burns or makes my lips itch. Is Vaseline petroleum jelly safe to use on lips. Is it gluten free?

Does anyone know of anything else that is unscented?

Yes, Vaseline is gluten free. Have you tried Burts Bees - my fav was honey.

Send some extra things to share...like homemade rice krispy treats or some great homemade cake or cookies. She'll love taking her lunch when her friends appreciate and look forward to the extra treats.

Pre celiac diagnosis I always used Ortega or old el paso enchilada sauce. When I went to the store post diagnosis both contained gluten ingredients so I had to switch to La Victoria, which is ok, but not the same:-(. Well I was at my mothers yesterday and she had a can of old el paso mild enchilada sauce on her counter and I grabbed it and read the label only to read the ingredients and see now it looks safe. Does anyone know If they changed their formula? Is this sauce now gluten free? If anyone knows for certain I would appreciate the info. Thanks.

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I assume that this listing is updated frequently. Just to verify, I would contact the company as well.

Thank yoU! Been laying awake at night petrified about this stinkin thing! Goint to print it off, stick it in my purse and fuggetaboutit until Saturday!!

Have a wonderful Saturday!

A company that says it up to you to decide is not liable, a company that states their product is gluten free is more liable.

Liable? Do you mean accountable? There is no legal standard in using the term "gluten free". As of know, it's a matter of honor and truth in labeling.

Although, I appreciate those companies who will voluntarily label their products gluten free, it does not stop me from reading their labels. Some also voluntarily disclose "shared lines" or "shared facilities"...neither is required by law, at this time. NOR, does any disclosure indicate that any testing was conducted.

The bottom line is....educated yourself and make the best choices possible. The responsibility for your good health is in your hands and only your hands. Restaurants and food products are not responsible for what goes in your mouth. You are. Choose well!

. I follow this simple rule, if the company does not list their product as gluten-free, it means it's not.

There is NO legal standard in the US for what manufacturers can claim as "gluten free". I would follow main stream product that hold a good reputation for disclosing ALL forms of gluten....Kraft, Unilever, ConAgra, etc.

And I seen no offending ingredients in the sauce. Enjoy!

Definitely check it out - call, look on the net, whatever.

I got glutenend by Hunt's spaghetti sauce a while a go. They have several canned varieties and I didn't see any gulten ingredients. However, after feeling sick I went on the net and found out that some of the 'flavors' are not gluten free...No, it didn't really make sense by the ingredient list but I could hire myself out as a gluten detector. You just never know.

Hi NorthernElf...I know that you have been at this a long time. Would you kindly post the support information that you found in Hunt's spaghetti sauce, regarding their listing of "flavors". I use Hunt's a lot!

My son's Gastro mentioned this as we left his office on Thursday and I was so underwhelmed with all the other information and results we got that day that I didn't ask any many questions as I should have, but basically...

he said that there is a pill being tested that's probably 5 years away from FDA approval that would counteract the effects of gluten. It will be for adults only but he will have no problem prescribing it for my son if it meets HIS approval (Adam's dr is a little sarcastic and sometimes I don't know if he's joking or not) All I asked was "How long" and "Wow so he can drink beer in college?" which was totally not what I should have asked but it had been a long day at endo, radiology, bloodwork and gastro.

Any thoughts?

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Hi,

This is my first post, my questions seem to fit in most with "is it normal..." I had been diagnosed with Celiac six months ago and have been doing my best to be gluten free ever since. None of my initial symptoms have gotten better, in fact they seem worse to me now. I know it takes a while to heal, but I am wondering if I am still ingesting gluten some how. There is so much to learn. I have a very busy house, five kids and a husband who have all tested negative, so it's just me eating gluten free. My symptoms are all about bloating and gas in the mornings, and after I eat. Is it truly possible to live in a gluten household and remain gluten free? I do all the cooking, have my own toaster...should I feel this terrible after six months? How will I know if it is the healing time or my diet?

any help would be appreciated

Hi and Welcome!

After six months on the gluten free diet, you should have noticed some improvement. Have you eliminated dairy? After the gluten is removed, you might notice other issues. Lactose intolerance can mimic symptoms. Often time, dairy can be reintroduced, successful.

Have you checked your toiletries and medications. With lots of kids in your house, are you mindful of "double-dipping" into the peanut butter, butter or mayo.

Other than that, I would recommend keeping a food diary that can help you isolate the culprit.

Anyone know of non-chain higher end restaurants in Miami that are gluten-free? thanks

Google Gluten Free Restaurants in Miami.