trents

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.

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?

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.

Yes, but if gluten-free products are all that is left on the shelf . . .

You said that last year you became very sick and was tested for Celiac Disease (I would assume) that prompted you to go gluten-free in your eating. Did the testing confirm you are a celiac? Did you have only the blood test done or did you get an upper GI to confirm villous atrophy? Did your illness improve after going gluten-free? I don't mean to be nosy but did your illness symptoms include GI problems?

That is a good plan.

Eating gluten-free would not cause the shape of your stools to change. I'm not a doctor but I would think that could only be caused by a deformation in the rectum/anus such as might be caused by hemorrhoids, scar tissue or a growth of some kind in or around the area. Have you had a colonoscopy recently?

I hope the general population doesn't all of a sudden decide to go gluten-free!

Went to Safeway yesterday as I was getting low in gluten-free bread. The bread isle had obviously picked over and the gluten-free bread section was somewhat depleted but I was able to get a couple of loaves of Franz gluten-free bread, my favorite. I could have taken more but decided not to hoard. If worse comes to worse we have enough gluten-free flour products to make our own, which we haven't done in years because the commercial products have improved so much.

5 hours ago, ravenwoodglass said:

I had to get just a couple things yesterday and while my favorite bread was very low in stock gluten-free pastas and other items were in good supply. The rest of the store was cleaned out of meats, eggs, and of course paper goods like TP and paper towels. I am relieved I only have to feed myself and my pets and had to go to two stores to get enough dog food for my little dog who has even more food restrictions than I do. I hate that people are wiping out shelves and even though there was only one case of my dogs food I only took enough cans to last her a week so the next person who needs it will have some available. People need to think of others at this awful time. If there are only a few items left and we can make do with with just a couple we need to do so.  I asked a stock person if they were putting out some frozen broccoli and she said she just put out a dozen and one guy immediately grabbed 10 of them.  I hope these selfish folks stop doing this soon.

All stores need to limit the amount of an item one person can buy per trip. Some are already doing that, like Walmart. This would give opportunity for the supply chain, already likely impaired by employee absenteeism, to catch up. Buying a lot per trip may be in keeping with social distancing but it would backfire when people start to suffer from malnutrition or lack of sanitizing supplies. There are people whose pantries stay pretty bare even under normal circumstances either because of low income or they may be single, for instance and eat out a lot.

What are you finding when shopping for gluten-free food products since the Corona virus outbreak?

My wife and I went to online order some things from Bob's Red Mill this morning and found that most of the gluten-free products we normally purchase from them were out of stock.

Is this due to hoarding or production issues created by work force absenteeism or some of both? 

This experience created a concern for me in that the gluten-free population represents a niche market to begin with and we have fewer alternatives than most people.

It's me, where does that graph come from? Does it represent a personal profile of reactions/sensitivities or is it a generic tool you found somewhere?

I note that instant coffee is a mild offender. Is that in comparison to non instant coffee? If so, that strikes me as interesting.

I guess one idea I have is to consider going on an anti inflammatory diet. There are certain foods that tend to increase inflammation that should be avoided and there are probably others that tend to quell inflammation. This may be one of those things you will have to live with but learn to manage better. Your idea of avoiding strenuous physical activity during flareups is certainly common sense and it might also be wise to take NSAIDs at the first sign of an episode.

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.

Many celiacs are also dairy intolerant and soy intolerant. Very common. 

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.

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.

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.

Unfortunately, the offending ingredient can be almost anything for different people. And I think it is also true that the gluten-free food industry probably uses a lot of ingredients that are not commonly found in mainline food manufacturing in order to come up with products that approximate that taste and texture of their mainline equivalents. So we can have this issue where we are subjecting our digestive and immune systems to strange things in order to avoid gluten; things our body's systems are not used to seeing and they have trouble breaking down and assimilating them.

I would check with your local government social services department to see if there are any public resources available to address your home's mold problem. That presents some potentially serious short and long term health risks. When you explained that your breathing was fine all day until you returned home that was tell tale IMO, especially if that is a pattern you observe. Mold is serious stuff, at least some kinds of it.

Do you rent or own your own home. If you are a renter there may be some legal recourse to have this taken care of.

Thyriodist? Is that a typo? When I google that I get nothing. Did you mean to type "thyroiditis" which is inflammation of the thyroid gland?

May we assume since you are a celiac that you are following a strict gluten free diet?

It's good to hear things are more or less under control now. Sounds like quite a medical ordeal you have been through and a long winding rode. Thanks for sharing. So many more medical problems are autoimmune based than most people realize.

They may have chosen to just be polite. I do computer repair and technology support and realize I can't always correct my customer's misconceptions and misnomers. I generally know what they are trying to say even if they don't say it correctly and it's often easier just to fix the issue rather than to educate. Most likely, they won't remember it anyway and some people feel put down when you try to correct them, no matter how graciously you try to do it.

I had a sebaceous cyst removed from the back of my head some years ago because I was constantly injuring it when combing my hair.

There is also something called a lipoma which is a nodule under the skin filled with fatty material. I have a few of those in places that don't bother me.

And you are sure these are swollen lymph nodes and not just some kind of cyst?

https://www.healthline.com/health/sebaceous-cyst

When I was a child I had frequent bouts of tonsillitis for which I was given antibiotics until age 7 when the tonsils were removed. Back in those days, penicillin was still a silver bullet. As a teenager and college-age young adult I was on tetracycline therapy continuously (if I recall correctly) for acne. I often wonder if all those antibiotics set the stage for adult onset of celiac disease in my mid-late 30s, which of course, wasn't diagnosed for another 14-15 years.