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Is it Important to ONLY eat Certified gluten free?


Zenith

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Zenith Explorer

Please is there any GLUTEN FREE products I need to stay away from?  SO far I eat AMYs meals and some Saffron Road  India meals, and do fine.

Anybody have a problem with those?

I eat Udis sometimes and do fine,  and with the Aldis cookies and brownies I do fine.

SO is it very important to ONLY eat certified gluten free as opposed to items saying Gluten Free and NOT certified?

Well what got me glutened was the Wal MART Scorchin Hot chips and Salsa verde which they used to put in big letters,  'gluten free', on front of bag , and now they  put it on the back in small letters and it is NOT certified gluten free. So now I am afraid to eat any gluten free corn CHIPS and potato chips. I guarantee you something changed in the manufacturing and they got heavy contamination apparently with several batches (the wal mart chips).

SO please stay away from those. Anybody thinking about getting a GLUTEN sniffer  testing DOG??? DO you know how much it costs?

I know it is not unusual for celiacs  to get glutened on gluten free stuff. Also I guarantee you Doritos are NOT gluten free and they are not labeling their product correctly.  They say "contains milk products". When is should say  "also contains wheat". But the bags do not.  Before I knew I had celiacs I got sick many times eating  Doritos. 


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trents Grand Master

It's not an easy question to answer because individual celiacs vary in their sensitivity to trace amounts of gluten and even how they react to gluten. It is a well known fact that many or most people who eventually get diagnosed with celiac disease never experienced dramatic gastro intestinal distress. The investigation that finally led to their celiac disease diagnosis was motivated by other symptoms or medical issues. I'm one of them. It may also be true that once you have been eating gluten-free for a significant amount of time you become more intolerant to gluten such that illness is triggered by a lesser amount of gluten than formerly. 

I also wonder if in your experience with certain products and brands the illness might be triggered by some other ingredient change in the formulation besides gluten.

But it is true that "Gluten Free" and "Certified Gluten Free" are not to be taken as equivalent. I suppose you could contact the manufacturers of the products that claim to be gluten free but not certified so to find out what standard they use for their claim. Currently, the standard for gluten free is 20 ppm but even that is under review.

Zenith Explorer
(edited)

Omg thanks so much. I had eaten these chips before with no problem. Funny thing is all bags I had bought at the  N'hood Market store (walmart)  that I got glutened on.  The same chips at the Wal mart Supercenter  I never got glutened on.

That may be irrelevant.  I believe some how many batches got contaminated. And maybe there are more than one factory the chips come from.  Have you heard of somebody that cannot even handle 20ppm??

I take it those chips had MORE than that.   WOW, so i am NOT the only person with UNCONTROLLABLE shaking right after getting glutened and having a bit of IBS?? I saw that in another post.

I had been having uncontrollable shakes since  2010. Of course I was eating gluten back then.

NOW I realize where that symptom is coming from. It will last about  30 minutes it seems.

I also heard that ,what you told me, that when ppl give up gluten they become even LESS tolerant to it as time goes on.  I think my grandma had it (celiacs or intolerance)  and my aunt and my sister is showing some intolerances to wheat.  She is just like "i think it is the sugar".  I was like  "no".  Its wheat!!!  

Why if we were born this way only getting symptoms at age  38 ???  Maybe I was always having soft-core symptoms.    U could possibly be right with the formulation as well but my symptoms pretty much told me  GLUTEN. At first I was wondering  about the malto dextrin.   I do plan on getting an allergy test.  Do you know how docs do that?  Is it invasive?    I don't seem to be allergic to corn which is what most malt dextrin is made from. Wow maybe they are starting to use WHEAT malto dextrin in their chips.   Thanks so much!!!!    What medical issues were you having before celiacs?

 

 

Edited by Zenith
trents Grand Master

I have to leave for an appointment now but you raise some questions that I think I can help with. I'll get back to you.

Fenrir Community Regular

I've never had a reaction to anything labelled gluten-free. While some may react to amounts less than 20ppm , many items labeled gluten-free have much less than 20ppm. IMO, most celiacs shouldn't react to foods labeled gluten-free unless they are dishonest in their labeling. 

trents Grand Master

There is suspicion from within the Celiac/gluten intolerant/gluten sensitive community and it's researchers that 20ppm might not be an adequate limit for some. That's why it's under review. 

As far as your shaking, neurological dysfunction of various kinds is a well-known gluten-related problem within the celiac/gluten sensitive community.

In retrospect, the onset of celiac disease for me was about age 37. It was then that I started experiencing elevated liver enzymes for no other apparent reason and fatigue as well. This is called "adult onset celiac disease". Researchers believe that celiac disease often remains dormant for decades, even though the genetic potential for it is present from birth, and is triggered by some stress event such as a viral infection. A lot of autoimmune diseases have stress triggers. At the time I dismissed the slightly elevated liver enzymes as testing did not show hepatitis. But those slightly elevated liver enzymes got a little higher with each year's blood testing. I'll have more to say about this down below.

As far as allergy testing goes, I am dubious about their usefulness and reliability. I have had allergy testing done by skin prick and by blood analysis. I was on allergy shots for two years and it seemed to help for about 1.5 years and then started losing it's effectiveness. The testing showed I had allergies to 30 or more common substances, many or most of them were unavoidable. The reason I am dubious about it is that there was a huge discrepancy between what the two tests showed I was allergic to. And this is the one of the medical community's long standing criticisms of allergy testing. You can have the same blood sample analyzed by two different labs and the results will not agree very well. The other main criticism of allergy testing is that there is often poor correlation between testing results and symptoms. I encourage you to research the subject. In the end, what you need to pay attention to is what you experience in real life from exposure to different potential allergens in food and in the environment (inhaled). 

What symptoms lead to my celiac disease diagnosis? I had some mild GI symptoms from time to time but nothing dramatic enough to cause me to seek medical attention. For me it wasn't symptoms at all but blood work values that were getting increasingly out of spec with time such as the aforementioned liver enzymes, iron deficiency and subnormal total protein and albumin levels. I was working in a medical setting and my benefits annual complete blood work. I also had developed osteopenia (pre osteoporosis) and I was only in my early 50s. So it was about fifteen years between the time of adult onset celiac disease and the diagnosis.

Fenrir Community Regular

Yes, for adults, many times a stressful event or surgery will be when you start noticing. 

I started having issues after I had my gallbladder out and my Mom died after a long illness. 


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Zenith Explorer
18 hours ago, trents said:

There is suspicion from within the Celiac/gluten intolerant/gluten sensitive community and it's researchers that 20ppm might not be an adequate limit for some. That's why it's under review. 

As far as your shaking, neurological dysfunction of various kinds is a well-known gluten-related problem within the celiac/gluten sensitive community.

In retrospect, the onset of celiac disease for me was about age 37. It was then that I started experiencing elevated liver enzymes for no other apparent reason and fatigue as well. This is called "adult onset celiac disease". Researchers believe that celiac disease often remains dormant for decades, even though the genetic potential for it is present from birth, and is triggered by some stress event such as a viral infection. A lot of autoimmune diseases have stress triggers. At the time I dismissed the slightly elevated liver enzymes as testing did not show hepatitis. But those slightly elevated liver enzymes got a little higher with each year's blood testing. I'll have more to say about this down below.

As far as allergy testing goes, I am dubious about their usefulness and reliability. I have had allergy testing done by skin prick and by blood analysis. I was on allergy shots for two years and it seemed to help for about 1.5 years and then started losing it's effectiveness. The testing showed I had allergies to 30 or more common substances, many or most of them were unavoidable. The reason I am dubious about it is that there was a huge discrepancy between what the two tests showed I was allergic to. And this is the one of the medical community's long standing criticisms of allergy testing. You can have the same blood sample analyzed by two different labs and the results will not agree very well. The other main criticism of allergy testing is that there is often poor correlation between testing results and symptoms. I encourage you to research the subject. In the end, what you need to pay attention to is what you experience in real life from exposure to different potential allergens in food and in the environment (inhaled). 

What symptoms lead to my celiac disease diagnosis? I had some mild GI symptoms from time to time but nothing dramatic enough to cause me to seek medical attention. For me it wasn't symptoms at all but blood work values that were getting increasingly out of spec with time such as the aforementioned liver enzymes, iron deficiency and subnormal total protein and albumin levels. I was working in a medical setting and my benefits annual complete blood work. I also had developed osteopenia (pre osteoporosis) and I was only in my early 50s. So it was about fifteen years between the time of adult onset celiac disease and the diagnosis.

Wow. Thanks for that information. I agree when you eat something you have to pay attention  to your pains and reactions . I took a $75.00  550 food intolerance test done from Amazon. (hair analysis). Guess what it said I was  intolerant to everything except   coconut, almonds, and beef basically.  But in a way it was right . It was picking up on my pituitary issue where all sugars make me dizzy. Pretty much all food does. It is best for me to eat no sugar. I am NOT as dizzy. I don't know if gluten caused my PIT issue or not  or vice versa.

I had a  7mm adenoma  on my Pituitary  gland  taken off in  2011.  I am much better , but  It  did NOT cure all my problems but now I  am thinking that condition will be much better now since I am not eating gluten.

I think the gluten was exaserbating my symptoms. I thought the shaking was from that now I realize it is from both or GLUTEN. I believe my symptoms from gluten started in 2009, maybe earlier.   My PIT issue started in 2009 too. My main symptom is hypoglycemia, and I can't handle the SUN.  AND I can't handle chemicals or chemical smells. I never could tolerate alchohol or caffeine.  I am starting to feel like a million dollars now.

I just have to eat very little sugar, and start exercising, and never get GLUTENED again. I will see if the given up gluten will help me tolerate the SUN a bit better. I don't know yet. I have just always stayed away from it when  I realized I could not handle it in 2011. I over heat easily too.  So I don't know if gluten has anything to do with the  PIT gland issues or not or what came first.  I also was TOLD I was anemic when I was 27 by a doctor after being released by a paid clinical study.

Funny how no other mainstream  doctor told me that when I went to the regular docs.  My tests came up within range.   Also in 2017 a quack chiropractor told me I was anemic after looking at my tounge.

Thanks for info!!!!   So are you doing good now? Does your body give you warning signals  when you are about to be glutened so to STOP?    well I did not pay attention last Friday.  NOW I  know to pay attention to that  small Pain that I get in my stomach above pubic area.  But my goal is to never eat processed foods again.

 

trents Grand Master

If you are sensitive to sunlight that can be a sign of Lupus, a disease which has a wide range of symptoms such that it manifests itself differently for different people. It has long fingers. But sensitivity to sunlight is a classic Lupus symptom. And it is another autoimmune-based disease.

I'm not certain how a minor amount of gluten ingestion affects me or if it gives me recognizable symptoms. What I can tell you is that a large amount of gluten ingested makes me violently ill for several hours with vomiting and diarrhea. Several months ago I accidentally ate two or three of my wife's homemade biscuits (made with wheat) before going to bed one night and woke up two hours later with the symptoms I described. She also had made me gluten-free biscuits that looked almost exactly the same but I grabbed the wrong ones.

Thanks for inquiring about my welfare. Several days ago I decided to discontinue my morning routine of a large, strong cup of coffee because I was getting leakage from my rectum and "itchy butt" throughout the day. Coffee/caffeine can cause that. So right now I'm going through withdrawal and it's a little tough sledding.

 

  • 2 weeks later...
It's me Newbie
On 3/3/2020 at 5:13 PM, Zenith said:

Please is there any GLUTEN FREE products I need to stay away from?  SO far I eat AMYs meals and some Saffron Road  India meals, and do fine.

Anybody have a problem with those?

I eat Udis sometimes and do fine,  and with the Aldis cookies and brownies I do fine.

SO is it very important to ONLY eat certified gluten free as opposed to items saying Gluten Free and NOT certified?

Well what got me glutened was the Wal MART Scorchin Hot chips and Salsa verde which they used to put in big letters,  'gluten free', on front of bag , and now they  put it on the back in small letters and it is NOT certified gluten free. So now I am afraid to eat any gluten free corn CHIPS and potato chips. I guarantee you something changed in the manufacturing and they got heavy contamination apparently with several batches (the wal mart chips).

SO please stay away from those. Anybody thinking about getting a GLUTEN sniffer  testing DOG??? DO you know how much it costs?

I know it is not unusual for celiacs  to get glutened on gluten free stuff. Also I guarantee you Doritos are NOT gluten free and they are not labeling their product correctly.  They say "contains milk products". When is should say  "also contains wheat". But the bags do not.  Before I knew I had celiacs I got sick many times eating  Doritos. 

It would be wise to stay away from all foods that can even 'crossreact' with gluten. My problems persisted after quetting gluten (but I replaced it with a lot of rice, potatoes, milkproducts, etc).

You can use the graph for the foods you can start to eliminate beside gluten. 

Hope it helps!

Gluten-Cross-Reactivity-How-your-body-can-still-think-you’re-eating-gluten-even-after-giving-it-up-2-800x600.webp

Scott Adams Grand Master

Newly diagnosed celiacs should keep a food diary and they may have to avoid other foods until they heal. Once they heal, which can take up to 2 years or more, they may be able to add back many foods that were causing them issues...except gluten of course.

  • 2 weeks later...
Shalome Rookie
On 3/3/2020 at 9:13 AM, Zenith said:

Please is there any GLUTEN FREE products I need to stay away from?  SO far I eat AMYs meals and some Saffron Road  India meals, and do fine.

Anybody have a problem with those?

I eat Udis sometimes and do fine,  and with the Aldis cookies and brownies I do fine.

SO is it very important to ONLY eat certified gluten free as opposed to items saying Gluten Free and NOT certified?

Well what got me glutened was the Wal MART Scorchin Hot chips and Salsa verde which they used to put in big letters,  'gluten free', on front of bag , and now they  put it on the back in small letters and it is NOT certified gluten free. So now I am afraid to eat any gluten free corn CHIPS and potato chips. I guarantee you something changed in the manufacturing and they got heavy contamination apparently with several batches (the wal mart chips).

SO please stay away from those. Anybody thinking about getting a GLUTEN sniffer  testing DOG??? DO you know how much it costs?

I know it is not unusual for celiacs  to get glutened on gluten free stuff. Also I guarantee you Doritos are NOT gluten free and they are not labeling their product correctly.  They say "contains milk products". When is should say  "also contains wheat". But the bags do not.  Before I knew I had celiacs I got sick many times eating  Doritos. 

Gluten can be found in food labled gluten-free due to spices, flavoring, rice syrup produced using barley. Read every ingredient, when in doubt leave it out!! Do your own cooking from scratch if possible!

I recently became extremely!! ill eating Honeynut Cheerios!  I spoke to  General Mills Co., viewed their video re. separating wheat, barley, rye OMG.! scary! then they sent me coupons to buy more cereal!

NEVER, NEVER WILL I EVER BUY, OR EAT CHEERIOS, OR ANYTHING ELSE FROM GENERAL MILLS, EVER!!!!

I sent them a copy of FDA regs on allowances for gluten! I will a file complaint with FDA!

I Know when I am exposed to Barley... I have episodes of Vomiting, serious gut bleeding, nose bleeds, cough, headach, fatigue, all lasting for weeks which happened with Cheerios!

GM responded with coupons!

Shalome Rookie
6 minutes ago, Shalome said:

Gluten can be found in food labled gluten-free due to spices, flavoring, rice syrup produced using barley. Read every ingredient, when in doubt leave it out!! Do your own cooking from scratch if possible!

I recently became extremely!! ill eating Honeynut Cheerios!  I spoke to  General Mills Co., viewed their video re. separating wheat, barley, rye OMG.! scary! then they sent me coupons to buy more cereal!

NEVER, NEVER WILL I EVER BUY, OR EAT CHEERIOS, OR ANYTHING ELSE FROM GENERAL MILLS, EVER!!!!

I sent them a copy of FDA regs on allowances for gluten! I will a file complaint with FDA!

I Know when I am exposed to Barley... I have episodes of Vomiting, serious gut bleeding, nose bleeds, cough, headach, fatigue, all lasting for weeks which happened with Cheerios!

GM responded with coupons!

https://www.fda.gov/safety/report-problem-fda 

To file a concern or complaint with FDA.

trents Grand Master
9 minutes ago, Shalome said:

Gluten can be found in food labled gluten-free due to spices, flavoring, rice syrup produced using barley. Read every ingredient, when in doubt leave it out!! Do your own cooking from scratch if possible!

I recently became extremely!! ill eating Honeynut Cheerios!  I spoke to  General Mills Co., viewed their video re. separating wheat, barley, rye OMG.! scary! then they sent me coupons to buy more cereal!

NEVER, NEVER WILL I EVER BUY, OR EAT CHEERIOS, OR ANYTHING ELSE FROM GENERAL MILLS, EVER!!!!

I sent them a copy of FDA regs on allowances for gluten! I will a file complaint with FDA!

I Know when I am exposed to Barley... I have episodes of Vomiting, serious gut bleeding, nose bleeds, cough, headach, fatigue, all lasting for weeks which happened with Cheerios!

GM responded with coupons!

Video on separating wheat, barley, rye? What? Didn't follow that. Do you have a link to that video?

Did the honey nut cheerios claim to be gluten-free? Historically, breakfast cereal manufacturers have often used "malt flavoring" in many of their corn and rice-based products and was so stated in the ingredient labels. This they would not be gluten free since malt is made from gluten containing grains. More recently, however, many of them have eliminated that ingredient and now label their corn and rice-based products as gluten-free.

Shalome Rookie
1 hour ago, trents said:

Video on separating wheat, barley, rye? What? Didn't follow that. Do you have a link to that video?

Did the honey nut cheerios claim to be gluten-free? yes Historically, breakfast cereal manufacturers have often used "malt flavoring" all ingredients were listed, no malt..in many of their corn and rice-based products and was so stated in the ingredient labels. This they would not be gluten free since malt is made from gluten containing grains. More recently, however, many of them have eliminated that ingredient and now label their corn and rice-based products as gluten-free.

Video is on the Honeynut Cheerios web site. https://www.cheerios.com/gluten-free/?utm_source=bing&utm_medium=cpc&utm_campaign=Cheerios_Brand_Gluten Free_Exact_P&utm_term=cheerios gluten free&utm_content=General

?can see video here.

trents Grand Master

The link says the product is tested to make sure there are less than 20 ppm of gluten. That meets the standard. Are you sure you aren't in the 10% of Celiacs who react to oats like you would to wheat, barely or rye?

Shalome Rookie

I know what it says, any Celiac knows what is labled may not be the case. Co.s don't always know what their suppliers use in their products!  I know what makes me sick! I have been served wheat at PF Chang's accidentally, lot of stomach issues, recovered slowly, no issues like Cheerios!

Brand of root beer had unlabled barley claimed to be gluten-free, same horrible experience as Cheerios! Celiacs trust our bodies, like peanut allergy suffers..labels are not always correct and some companies value money over consumers health! My job to protect myself and help others to avoid the same experience! Amen

trents Grand Master

I realize all that but I'm just trying to understand why you, "sent them a copy of FDA regs on allowances for gluten!" when they already know what the regs are and claim to be in compliance. Do new FDA regs require less than 20 ppm of gluten to be able to use the gluten-free label? What am I missing here? Otherwise, in order to file a meaningful FDA complaint, the burden of proof would be on you to provide something other than anecdotal evidence that General Mills is not meeting the standard. Your only chance of getting any action on this would be if numbers of others are having reactions to this product and are also filing complaints - that, or if you were to pay some laboratory to test the product to validate your claim.

Scott Adams Grand Master

General Mills has spent millions to develop and patent technology that now may even keep their cereals under 10ppm, which is their goal. Although some claim they haven’t been doing this no evidence is ever offered to support their claims. I’ve said this many times, GM is a huge company with deep pockets. If law firms could simply but 100 boxes and if any tested above 20ppm, there would be a class action lawsuit against them. They produce millions of boxes per week and so far this hasn’t happened. They test and monitor much more than most smaller companies can afford to.

  • 1 month later...
KittyButterfly Rookie
(edited)
On 3/3/2020 at 11:13 AM, Zenith said:

Please is there any GLUTEN FREE products I need to stay away from?  SO far I eat AMYs meals and some Saffron Road  India meals, and do fine.

Anybody have a problem with those?

I eat Udis sometimes and do fine,  and with the Aldis cookies and brownies I do fine.

SO is it very important to ONLY eat certified gluten free as opposed to items saying Gluten Free and NOT certified?

Well what got me glutened was the Wal MART Scorchin Hot chips and Salsa verde which they used to put in big letters,  'gluten free', on front of bag , and now they  put it on the back in small letters and it is NOT certified gluten free. So now I am afraid to eat any gluten free corn CHIPS and potato chips. I guarantee you something changed in the manufacturing and they got heavy contamination apparently with several batches (the wal mart chips).

SO please stay away from those. Anybody thinking about getting a GLUTEN sniffer  testing DOG??? DO you know how much it costs?

I know it is not unusual for celiacs  to get glutened on gluten free stuff. Also I guarantee you Doritos are NOT gluten free and they are not labeling their product correctly.  They say "contains milk products". When is should say  "also contains wheat". But the bags do not.  Before I knew I had celiacs I got sick many times eating  Doritos. 

Hi! 

I like your post.. I am wondering the same.. 

I just joined the site today after lurking and obsessively reading around on this site for over a month on a daily basis... 

my first post, (which was today, a few hours ago actually) ravaged details on how I reacted to Doritos cool ranch, and some questions about it...  

please feel free to check it out and see if you reacted the same to the Doritos. I was going to link it here but I just realized it still says pending, but I can share passages from it if you desire to know how I reacted to the Doritos. 

also what flavor did you get sick from? thank you... 

the interesting thing is that while lurking around, I actually remembered your profile name, lol... and whats interesting about that is you literally helped me out tonight cause I wasn't sure if im the only one reacting to doritos even though it doesn't list gluten ingredient...as far as the eye can see...

as some flavors are considered gluten free while others "wary"...  (as ive read on the Frito lays website)

https://www.fritolay.com/dietary-needs/gluten-free/us-gluten-free-products-and-products-not-containing-gluten-ingredients

"The Frito-Lay products listed below do not contain wheat, rye, barley or oat ingredients (we include oats in this list as a precaution as oats are often commingled with gluten-containing grains). Please note however, some of the products listed below may be manufactured on the same lines as products that contain gluten. Although our lines are cleaned between production runs, Frito-Lay has not tested these products for gluten content and the ingredients in these products may have come into contact with gluten-containing products prior to manufacturing. Individuals who are sensitive to gluten should take these factors into consideration in consuming these products.

Please note: The information provided pertains only to products made and distributed in the U.S. Products sold in other countries under similar brands may be made using slightly different recipes and ingredients to accommodate local needs and preferences."

 

doritos cool ranch was in the same category as the text above, so it applies to Dorito cool ranch.. 

Edited by KittyButterfly
trents Grand Master

Again, your reaction could be to some other ingredient besides gluten that is contained in this particular Doritos product that is not found in the other non certified non gluten containing Dorito products. 

  • 3 weeks later...
zenith12 Enthusiast
On 3/4/2020 at 10:28 AM, trents said:

If you are sensitive to sunlight that can be a sign of Lupus, a disease which has a wide range of symptoms such that it manifests itself differently for different people. It has long fingers. But sensitivity to sunlight is a classic Lupus symptom. And it is another autoimmune-based disease.

I'm not certain how a minor amount of gluten ingestion affects me or if it gives me recognizable symptoms. What I can tell you is that a large amount of gluten ingested makes me violently ill for several hours with vomiting and diarrhea. Several months ago I accidentally ate two or three of my wife's homemade biscuits (made with wheat) before going to bed one night and woke up two hours later with the symptoms I described. She also had made me gluten-free biscuits that looked almost exactly the same but I grabbed the wrong ones.

Thanks for inquiring about my welfare. Several days ago I decided to discontinue my morning routine of a large, strong cup of coffee because I was getting leakage from my rectum and "itchy butt" throughout the day. Coffee/caffeine can cause that. So right now I'm going through withdrawal and it's a little tough sledding.

 

Omg, coffee is so toxic but it does smell good and cafe chocolate mochas especially made in england are so good but i been alergic to caffeine and decaf for quite some time so i have to stay away. I hope your itchy butt gets better. Yea it is a natural laxative.

MisterSeth Enthusiast

if it outright says "gluten free" its probably safe. I think typically the products approaching 20ppm and are gluten free will say "processed in a facility that also processes wheat" meaning they tested it at 20ppm but it was still adjacent to flour at some point. 

many products don't get certified because a supplier didn't want to spend money getting their facilities tested. for example if it contains grain fed beef, the slaughterhouse is NOT going to be a gluten-free facility, none the less, you can't get glutened by a cow that eats gluten

trents Grand Master

I agree, some common sense is in order. A sack of potatoes will not likely be labeled gluten-free but it will be by the nature of what it is.

And you make a good point about many food producers not wanting to incur the expense of regular lab testing just to be able to put the gluten-free sticker on their product.

My concern is with packaged food products that go through some kind of milling or crushing process on machinery that also does that for wheat, barley or rye. Are they cleaned or thoroughly cleaned between runs of gluten things and non gluten things? The first few batches of the non gluten stuff might pickup more than a little cross contamination if things are not thoroughly cleaned and it won't be safe until later in the production process when the gluten remnants have worked their way out through dilution.

MisterSeth Enthusiast
On 6/3/2020 at 10:39 PM, trents said:

I agree, some common sense is in order. A sack of potatoes will not likely be labeled gluten-free but it will be by the nature of what it is.

And you make a good point about many food producers not wanting to incur the expense of regular lab testing just to be able to put the gluten-free sticker on their product.

My concern is with packaged food products that go through some kind of milling or crushing process on machinery that also does that for wheat, barley or rye. Are they cleaned or thoroughly cleaned between runs of gluten things and non gluten things? The first few batches of the non gluten stuff might pickup more than a little cross contamination if things are not thoroughly cleaned and it won't be safe until later in the production process when the gluten remnants have worked their way out through dilution.

ive felt shaky about eating chocolate bars because of that. it doesn't explicitly say they didn't do that with the cocoa, but I noted some choclate DOES say "may contain barley oats rye" which makes me think they have to declare it legally, at least in canada

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    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
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