Study: 8% of Gluten-Free Products Test Over 20ppm, and 15% of "Gluten-Free" Products Certified by GFCO Contain Gluten at Over 10ppm

[Lotte18]

I'm sorry Trents but I just don't have the time or the energy to make everything from scratch.  Nor does my NYC apartment have enough space to do so anyway.  I rely heavily on prepackaged bread.  And when they have a batch problem, I get glutened.  I've even been glutened by gluten-free bread from the Farmer's Market.  And that's a $20 farm-to-table loaf!  I applaud your self sufficiency but many of us simply can't live that way.

[trents]

@Lotte18, I didn't say I don't use prepackaged gluten-free foods because I do use them to an extent. And, I'm not a super sensitive celiac so, I seem not to react to cross contamination exposures. I was just making the point that for most people there are alternatives to prepackaged gluten-free stuff. And the fact is, the prepackaged gluten-free foods are generally highly processed nutritional sink holes.  Does it really take more energy to bake a potato, hard boil some eggs, peel a banana or an orange than it does to build a sandwich with gluten-free bread? Just saying.

[Lotte18]

The short answer is yes.  It does take more time and energy.  While I know some celiacs who are happy to down Skittles and Cheeze Its, there are plenty of us who are eating our fruits and veggies.  But we still need some form of bread.  It's basic.  

I'm happy for you that you're not "super sensitive."  Count your lucky stars!

[Aretaeus Cappadocia]

3 hours ago, Lotte18 said:

The short answer is yes.  It does take more time and energy.  While I know some celiacs who are happy to down Skittles and Cheeze Its, there are plenty of us who are eating our fruits and veggies.  But we still need some form of bread.  It's basic.  

I'm happy for you that you're not "super sensitive."  Count your lucky stars!

@Lotte18, when you say "bread", what is your requirement? Is it sufficient that you can butter it and eat it with a meal, or do you mean a robust sandwich bread that won't break apart with rough handling? I've been experimenting with bread and find it relatively easy to make the former (mix buckwheat flour/flaxseed meal/baking powder, bake and eat) but it's more involved to make the latter (Vitamix, overnight fermentation, and proofing). Personally, I've given up on pre-packaged gluten free breads because I don't like the taste, especially after the first day open (and they are expensive). At any rate, I agree with you on the role of bread - I really miss a good crusty loaf about as much as anything else.

[trents]

@Lotte18, Cheese Its have wheat flour as a primary ingredient so they would not fall under the category of cross contamination. No celiac should consume those. Skittles, on the other hand, are actually gluten free, according to the package. But I don't eat those either. 

[Scott Adams]

There is a new gluten-free Chez-Its that just launched....😉

[Lotte18]

Scott, as usual has the latest!  And unlike me, he can spell it!!!!!

[Lotte18]

2 hours ago, Aretaeus Cappadocia said:

@Lotte18, when you say "bread", what is your requirement? Is it sufficient that you can butter it and eat it with a meal, or do you mean a robust sandwich bread that won't break apart with rough handling? I've been experimenting with bread and find it relatively easy to make the former (mix buckwheat flour/flaxseed meal/baking powder, bake and eat) but it's more involved to make the latter (Vitamix, overnight fermentation, and proofing). Personally, I've given up on pre-packaged gluten free breads because I don't like the taste, especially after the first day open (and they are expensive). At any rate, I agree with you on the role of bread - I really miss a good crusty loaf about as much as anything else.

I hope this gives you guys a good laugh.  My kitchen is so small I don't even have room for the ingredients you've just listed, let alone the baking tools you need to use.  Your bread sounds delicious but, this is a city full of mice, etc.  We don't leave food out overnight.  Not ever.

I live with what's in the freezer case at Whole Foods.  Sadly, it is not delicious or nutritious.  Sometimes, Modern Bread and Bagel has a loaf left by the time I get there.  Most of the time though, sold out.  New York for ya.  

[Lotte18]

Forgot to forward this...just incase you're interested in joining this group...

March RDLA Webinar

Thursday, March 26 | 2:00pm - 3:00pm ET

Click Here to Register

Join us for a RDLA Webinar this month. Attendees will hear updates from recent rare disease advocacy activities during and following Rare Disease Week and an overview of appropriations priorities and recently introduced rare disease related bills.

Agenda

Recent Rare Disease Advocacy Activities

Jamie Sullivan, EveryLife Foundation for Rare Diseases

FY 2027 Appropriations Process Review
Dylan Simon, EveryLife Foundation for Rare Diseases

Genomic Answers for Children’s Health Act, H.R. 7118
Victoria Gemme, Leavitt Partners 

Medical Foods and Formulas Access Act, H.R. 5684/S.3304
Sarah Chamberlin, Flok Health

[trents]

34 minutes ago, Lotte18 said:

I hope this gives you guys a good laugh.  My kitchen is so small I don't even have room for the ingredients you've just listed, let alone the baking tools you need to use.  Your bread sounds delicious but, this is a city full of mice, etc.  We don't leave food out overnight.  Not ever.

I live with what's in the freezer case at Whole Foods.  Sadly, it is not delicious or nutritious.  Sometimes, Modern Bread and Bagel has a loaf left by the time I get there.  Most of the time though, sold out.  New York for ya.  

Your new mayor is going to fix all that and make groceries free to boot I hear!

[Lotte18]

😂

[Aretaeus Cappadocia]

2 hours ago, Lotte18 said:

Forgot to forward this...just incase you're interested in joining this group...

March RDLA Webinar

Thursday, March 26 | 2:00pm - 3:00pm ET

Click Here to Register

Join us for a RDLA Webinar this month. Attendees will hear updates from recent rare disease advocacy activities during and following Rare Disease Week and an overview of appropriations priorities and recently introduced rare disease related bills.

Agenda

Recent Rare Disease Advocacy Activities

Jamie Sullivan, EveryLife Foundation for Rare Diseases

FY 2027 Appropriations Process Review
Dylan Simon, EveryLife Foundation for Rare Diseases

Genomic Answers for Children’s Health Act, H.R. 7118
Victoria Gemme, Leavitt Partners 

Medical Foods and Formulas Access Act, H.R. 5684/S.3304
Sarah Chamberlin, Flok Health

Celiac is too common to be "rare" under the standard definition. Does this group do anything with Celiac?

[Lotte18]

  I'll be tuning in to the webinar to find out.  Maybe celiac isn't on their menu.  Doesn't mean it can't get on the menu.  

You can't get rarer than ALS and they had NO gov money going for research.  But then a Washington heavy weight was stricken with it.  He fought to get funding.  I believe the money he got came from some bill that funded the Pentagon.  Stranger things!  

[Aretaeus Cappadocia]

3 hours ago, Lotte18 said:

  I'll be tuning in to the webinar to find out.  Maybe celiac isn't on their menu.  Doesn't mean it can't get on the menu.  

You can't get rarer than ALS and they had NO gov money going for research.  But then a Washington heavy weight was stricken with it.  He fought to get funding.  I believe the money he got came from some bill that funded the Pentagon.  Stranger things!  

I look forward to hearing about it.

In case you didn't know, "Rare Disease" is a regulatory term that is defined, among other things, as affecting fewer than ~200,000 people in the US. It's a category that was established to provide assistance to develop treatments for diseases that might not otherwise be "commercially viable". In addition to opening funding sources, an official Rare Disease clinical program receives favorable regulatory opportunities relative to a non-Rare (it's been a while and I forget the details). Celiac affects >3M people in the US. The regulatory trick a company might try using would be to target a subset of celiacs, say "refractory celiac", and after they get approval do follow on studies to show efficacy in other celiacs. However, the FDA is aware of this trick and they'd have to have a good justification.