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Fda Reopens Comment Period On Proposed

kenlove

By kenlove
in Publications & Publicity

Recommended Posts

kenlove Rising Star
kenlove
Posted

Open Original Shared Link

is the link that shows you how to leave comments on the US FDA site for:

FDA NEWS RELEASE

For Immediate Release: Aug. 2, 2011Media Inquiries: Siobhan DeLancey, 202-510-4177, Open Original Shared LinkTrade Inquiries: Stephen King, 240-402-1407, Open Original Shared LinkConsumer Inquiries: 888-INFO-FDA FDA reopens comment period on proposed

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Takala Enthusiast
Takala
Posted

Brigadoon! Groundhog day! We get to do it again!

Well, so glad to see that Senators Leahy and Wyden, plus the others who put on that "awareness" thing in DC, may have had some effect on this FDA logjam !

Ken, can you have a look at this, and tell us if you think this is a typo or not?

It's from Boston.com

Open Original Shared Link

Now, though, the agency is moving forward with a new standard that manufacturers will be required to meet before they can slap on the gluten-free label. Federal officials are proposing that cookies, bread, and other wheat products making this claim can contain no more that 20 parts per million of gluten, a level below which gluten can

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I'm still thinking about this issue and trying to decide how to respond/comment. I really hope those are typo's! Would love to read some other's thoughts and comments on this.

kenlove Rising Star
kenlove
Posted
  • Author

for some reason the Open Original Shared Link link didnt work for me.

that 2mg is something like

.ooo1 of an ounce I think,

Im pretty sensitive and never take chances anyway

kenlove Rising Star
kenlove
Posted
  • Author

Got it open finally -- thanks for the Link-- not sure what to make of it all -- They seem to have ti down pat in Italy --

here there are too many companies with big $ gumming up the works.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I commented on the ruling and said I want gluten free* with an asterisc if there is up to 20ppm of gluten, with a clarification posted on the label.

We are looking for foods that are free from ANY gluten, which is vital to our health, not low in gluten. If several of those items are consumed daily they add up to trouble!

Once a person is diagnosed they are told to eat NO gluten. We have to rely on good labeling to ensue we are not consuming it.

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    • trents
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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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