The FDA is trying to silence the celiac community. We have 2 days to try to change that.

FDA

If you were looking for a follow up to the Elissa Goodman podcast catastrophe, not to worry. I’m not done with her by a long shot. But this post takes precedence. I actually should have written about this topic weeks ago but between my schedule and not really having a full understanding of the topic, I let it go til now. BUT IT IS VERY IMPORTANT.

Below I am going to share a document put together by Tricia over at Gluten Free Watchdog, who deserves all of the credit for pushing the celiac community to get involved in this. Again, and maybe it’s because…

…but the topic is a bit confusing so here is a quick summary:

1. The FDA sucks
2. The celiac community is getting screwed again
3. The FDA sucks

The FDA is trying to shut out the celiac community from ever being involved in future petitions regarding regulation of gluten containing grains. They only want to consider petitions from people who basically have “instant” reactions to an allergen and not, you know, perhaps dying of cancer years after ingesting that said allergen. Why? See items 1 and 3 above. Here is a fuller explanation from Tricia:

CommentGlutenFreeWatchdogFDA-2021-N-0553-0005

If you’d like even more clarity, you can listen to Tricia’s audio message.

So we have two days to hopefully change their minds. The deadline is August 17. And we do this by leaving a passionate comment HERE.

So let’s do what we do best. And what it seems we are constantly called to do. MAKE OUR VOICES HEARD.

If you’re not sure what to say, here is what GF Jules wrote. Please feel free to paraphrase her verbiage (she’s already given permission) but make it your own.

Celiac disease is a serious autoimmune disease affecting 3 million Americans; patients require strict adherence to a gluten-free diet to control the severe symptoms and keep the disease in remission.

Those with gluten sensitivity also require a gluten-free diet; estimates are that it affects between 10-16% of the population to some degree. (Many other patients with non-IgE-mediated medical conditions including but not limited to Hashimoto’s thyroiditis, Type 1 diabetes, autism and schizophrenia, also benefit from a gluten-free diet.)

While these are undisputedly serious medical conditions, they do not cause IgE-mediated reactions and acute and life-threatening responses.

While FALCPA protects these consumers to a limited extent, it is only in cases where manufacturers choose to voluntarily label certain products “gluten-free.” For other products not voluntarily labeled “gluten-free,” these consumers currently have no way of knowing if these foods contain gluten-containing grains other than wheat (which is covered by FALCPA labeling regulations).

Because FALCPA does not cover the gluten-containing grains barley and rye as it does for wheat, manufacturers in the U.S. are not currently required to alert consumers of the presence of other gluten-containing ingredients in their foods (such as malt, malt extract, malt syrup, malt vinegar, malt flavoring, natural smoke flavor, yeast extract and natural flavors).

For FDA’s draft guidance to limit citizen petitions regarding foods that cause any immune-mediated adverse reactions, and to limit its review to only foods causing IgE-mediated reactions and acute life-threatening responses is unfair, arbitrary, and ignores the science.

The very 2021 FAO/WHO Expert Committee referenced in FDA’s draft guidance reviewed the food allergens in existence since 1999 and determined that “cereals containing gluten” should be included in the list of foods and ingredients whose presence should always be declared in the list of ingredients on a food label.

It made this determination because it included celiac disease with IgE-mediated food allergies. The committee found that gluten-containing grains required mandatory disclosure due to potential harm to the population based on prevalence, severity and potency of potential harm.

While most countries around the world already require cereals containing gluten to be labeled, the U.S. as of now does not. Any move by FDA to close the door on citizen petitions for more protective regulations is frankly not only unreasonable, it’s unsound.

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8 thoughts on “The FDA is trying to silence the celiac community. We have 2 days to try to change that.”

  1. It is extremely hard for those of use with Celiac to find food to eat. Labeling needs to broaden not get less. Lots of food that don’t show wheat still contain gluten. I call or email companies regularly to see if their food is Gluten free.

    I’m not going to have a huge thing on this but want to point out some facts about those of us with the disease.

    1, gluten free is not a choice. It will kill us. It killed my mother and grand mother.
    2, products do not clearly list gluten items, only wheat. That is not enough.
    3, celiac disease is misdiagnosed sometimes for years. This causes malnutrition, small intestine damage and can kill you.
    4, any amount, wether it affects us right away or not, damages our small intestine. It will kill us.
    5, it is a genetic disease. It also leads to other autoimmune diseases
    6, about as many people have celiac as peanut allergies. Both can kill you. One may take longer.
    7, I might not die instantly, but if I get something with gluten because I missed something in the label, I will throw up for 5 hours within an hour of eating. This also causes you body to be in lots of pain. Also, many time people have to go to ER to get rehydrated.
    8, there is no cure for celiac. Our only option is a gluten free diet.
    9, there is no quick fix pill if you accidentally eat gluten, like an epi pen for peanut allergy people.
    10, this should be treated the same was as any other disease special diet. Peanut and diabetic diets are supported in hospitals and nursing homes, but not all support celiac. If I’m in a hospital I have to have someone bring food to me
    11, it’s not an every now and then choice. It’s a lifetime diet change. It will kill us.

    I don’t understand, so many years after this was discovered why we still fight this. Do people that eat milk, dairy, eggs etc die immediately after eating? Why should those be labeled and not all gluten containing items? We cant eat out, go to events and have normal social activities if we need food. A lot of places don’t allow food to be brought in, but if they can’t feed me, it should become a medical necessity.

    I so wish someone finally understood that this is real for those of us with the disease. I can’t express enough how sick we get, how awful we feel and how very frustrating this is. We usually already have stomach bad digestive issues with this disease, let alone the skin issues and other side effects from this disease. We don’t want to die from it too.

    1. The reason the FDA wants to shut gluten labeling and testing down and not require food labels, is because they don’t have an established testing protocol for gluten. I have started work with the University of Rhode Island. They have agreed to recreate the LCMS testing protocol used in Australia to test for gluten in fermented and non-fermented food, beverages, and medicine. The protocol will take a year and $100K, I have already contributed a grant I am eligible for with the state of RI for $36K towards these efforts.

      I have also created a gofundme petition asking for funds towards establishing an official protocol for gluten. Please share with everyone you know that has Celiac Disease, gluten allergy, or leads a gluten free life. Even if it’s just a few dollars, everything will help. The sooner we get the funds collected, the sooner the study can start. Here’s the gofundme petition.

      Everyone deserves safe and effective medicines, food we can eat, and brands we can trust that won’t get us sick or kill us.

      -LH

      Leigh Anne Hood
      401 239 9933

      https://www.gofundme.com/f/we-need-an-official-gluten-free-testing-protocol

  2. Done. Emailed. So pissed about this. Thank you for your persistence.

    I may or may not have used the word “bullshit” in my correspondence. I figure they’re used it me by now.

    Holly

  3. Celiac disease is an inherited disease that, if not cared for correctly, is eventually fatal. The children that inherit this disease starve to death. I had an aunt and an uncle who died just this way, since the medical community in the 30’s did not understand the disease. I have children, my cousins have children and the disease goes from one generation to another. This could, without the correct care, kill millions of people. Your lack of wisdom concern for this community is appalling. If this were cancer, would you do the same thing. You are being watched by the people you care for so little. We are all voters. I only wonder if this were you or one of your children, if you would show such little concern.

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I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

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