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Zenith

Is it Important to ONLY eat Certified gluten free?

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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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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.

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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

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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. 

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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.

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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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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.

 

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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.

 

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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.jpg

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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.

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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!

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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.

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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.

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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.

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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

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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.

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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.

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There are many foods not certified gluten free for example any fresh fruit or vegetable won’t be certified gluten free. If you mean only processed foods, there are still plenty that are truly gluten free but not certified.

 

Some foods you would not think of may contain gluten via maltodextrin or malt. But, not all maltodextrin contains gluten. If it says Corn maltodextrin or maltodextrin (corn) you are OK.

Be wary of any “natural” flavors/flavoring and anything in broth or brine.

Gor the 1st 6-24 mo, you may be hyper sensitive to gluten. Thus makes sense as your body has been fighting gluten and producing tones of IL-15 that is not being used in the fight, till that is degraded, sensitivity will increase. 
 

The genetic tests are one thing, but as a person in the medical research side of things I beg of you not to use the at home antigen tests. What they really measure is what you have been exposed to most, not what you are allergic to.

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