Attention Sensitive Celiacs

[dilettantesteph]

I am so disappointed to have to report this. They make such a big deal about being a gluten free facility and then only test their incoming grain to 10 ppm! I ordered grain from them and tested it and it was positive at a level which would have made me sick. I guess I will have to grow my own! Beware, sensitive celiacs. At least I know now what was making me sick for ages. I wasn't even going to test it since it is a gluten free facility. They will give me my money back, but I am out double the shipping ... again.

[Jeremiah]

Could you list in a typical day what you eat that you know to be 100% safe? Thanks in advance.

[Fiddle-Faddle]

I've read somewhere (sorry! can't remember where) that very sensitive celiacs do better when they avoid all grains anyway.

I suppose that the proteins of most grains would have vaguely similar molecular structure? And someone who is terribly sensitive to one grain (and had suffered years of intestinal damage and autoimmune involvement) would have an immune system that would react to any that would be similar?

[Mike M]

I am so disappointed to have to report this. They make such a big deal about being a gluten free facility and then only test their incoming grain to 10 ppm! I ordered grain from them and tested it and it was positive at a level which would have made me sick. I guess I will have to grow my own! Beware, sensitive celiacs. At least I know now what was making me sick for ages. I wasn't even going to test it since it is a gluten free facility. They will give me my money back, but I am out double the shipping ... again.

They indeed had/have issues. I called them a couple of months ago after buying one of there cereal's (ginger snap if memory serves me correctly) and the first thing she asked was where I bought it and then said it had been discontinued because the source could not guarantee gluten status. Needless to say, I did not eat it or waste any money testing it. Mike

[AMQmom]

Thank you for this heads up. My daughter's diet is restricted to quinoa, amaranth and tapioca so I have included a lot of Nu-World products. I will keep a closer eye on her behavior based on her consumption or maybe even toss all of my stuff??? Hate to do that!!!! Really appreciate your note!

[dilettantesteph]

Could you list in a typical day what you eat that you know to be 100% safe? Thanks in advance.

Everything I eat in a day is 100% safe. Fruit, vegetables, juice, booze, whole grains, everything in doubt tested. I got really tired of getting sick.

[Lisa]

Could you list in a typical day what you eat that you know to be 100% safe? Thanks in advance.

I can't think of any consumable product that would be considered 100% gluten free safe, one which would be free of contamination in the production, harvesting, shipping and marketing. Tomatoes grown in your backyard, only touched by the sun and your hands could be 100% gluten free.

There is no guarantee that the stock person didn't stack the broccoli in the box with one hand and had a bologna sandwich with the other.

Take reasonable precautions.

[Lisa]

I ordered grain from them and tested it and it was positive at a level which would have made me sick.

What type of test did you do that indicated "positive" at the level that made you sick?

Open Original Shared Link

Is AMARANTH gluten-free?

YES! Amaranth has been tested by a certified AOAC food analysis laboratory (ELISA tested) and is certified gluten-free. Amaranth is recognized by the Gluten Intolerance Group, the Celiac Disease Foundation, the Celiac Sprue Association, the American Dietetic Association and other groups as gluten-free.

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[happygirl]

Also important to note that it was one product that was tested, with a method that to some, is questionable in its reliability/validity.

[psawyer]

There is no guarantee that the stock person didn't stack the broccoli in the box with one hand and had a bologna sandwich with the other.

This is so true. This can happen even in a supposedly gluten-free facility if employees come back from lunch with crumbs on their hands or clothing.

Despite all the precautions you may take, and that manufacturers of food products may take, there can be no absolute guarantees.

[snowgirl]

What was the method of testing - I saw someone said it is not considered reliable by some?

My understanding was that the ELISA testing can only test to 10 ppm anyhow? I had sent a sample to Univ of Nebraska and I think that was the level they test to - so it just comes back less than that which could still be zero is my understanding.

I used to buy the Nu World Amaranth snaps all the time for my son - he loved them. But when they discontinued them last year they told me it was because they could no longer find a facility that could guarantee gluten-free - I thought that meant they ahd one but had to change. Maybe it meant it never was , I don't know??

Thanks for the info.

[Mango04]

Based on my understanding, I don't think it's scientifically possible to test for zero ppm. Just because they use 10 ppm testing doesn't mean the product contains gluten, it just might be the best testing they can do.

It's kind of unfortunate - the companies that bother to test their products get a bad rap, simply since the tests are so complicated to understand. That's just what I think though - I could be wrong....

[Jeremiah]

Everything I eat in a day is 100% safe. Fruit, vegetables, juice, booze, whole grains, everything in doubt tested. I got really tired of getting sick.

I was hoping you would list the details, I don't have the means to send off my food to have it tested and it sounds like you have already done the leg work. Thanks in advance.

[Jeremiah]

You can't think of one product that is gluten-free safe??? How about Banannas, Oranges, Potatoes, these are the first things coming to mind, if I put much time into it, I'm sure I'd come up with many more.

[Lisa]

You can't think of one product that is gluten-free safe??? How about Banannas, Oranges, Potatoes, these are the first things coming to mind, if I put much time into it, I'm sure I'd come up with many more.

Jeremiah,

My point was, to take REASONABLE precautions. Celiac Disease does not have to be a Ball & Chain you drag around with you for the rest of your life.

The easiest way to deal with it is to learn to read labels, don't rely on lists, trust your own judgment and accept where you are.

[Mike M]

The poster is talking to those "very sensitive" celiacs that really need this kind of information in order to live as safe as possible. Even the most newly diagnosed celiac surely should know that it is WHEAT, BARELY, RYE and OATS or WBRO for short that must be avoided as well as CROSS CONTAMINATION or CC for short, of the above mentioned grains. Mike

Open Original Shared Link

[dilettantesteph]

The poster is talking to those "very sensitive" celiacs that really need this kind of information in order to live as safe as possible. Even the most newly diagnosed celiac surely should know that it is WHEAT, BARELY, RYE and OATS or WBRO for short that must be avoided as well as CROSS CONTAMINATION or CC for short, of the above mentioned grains. Mike

Open Original Shared Link

Thank you Mike M. Sometimes us sensitive types are really misunderstood.

[Gentleheart]

You know, I've been paying closer attention lately to everyone's postings and also re-reading my stacks of accumulated gluten books and cookbooks, while going to bookstores to see what's new on the subject. I'm noticing that nearly everything being written and said out there applies to those fortunate folks who are certainly gluten intolerant/celiac, but seem to not be particularly super sensitive. I don't know if we will find out someday that they actually have been hurting themselves at a subclinical or sub symptom level by not being strict enough and didn't know it or if we will find out that we are all indeed at different levels of sensitivity, which will open up a whole new chapter of this disease. Several newer writers are certainly going in that direction.

I recently got the newsletter from our state celiac association. It is always very informative and I appreciate the dedication of the people who participate. But from the beginning, I have noticed that they absolutely pay no attention to any gluten intolerant person who also has additional intolerances, not even dairy, or who might be a little more super sensitive. All the potlucks, recipes shared and company products featured are for those who can have anything and everything as long as it isn't specifically gluten. And most can apparently even tolerate the 200 ppm levels. It's amazing. Maybe that's their only goal. And I'm sure they serve a lot of people with that stance. But it leaves out a ton of people as well. I don't know that I have any better ideas, but I've just been pondering that situation since it effects me personally.

I admit that I hope someday to be one of those people who can actually casually shop in gluten free sections of grocery stores and use all those creative gluten free recipes in the cookbooks, while still feeling great. It must be wonderful to have that much freedom and variety to choose from. And if there really are levels of gluten sensitivity, that is certainly the level you would want to be on! But if you are fortunate to be one of those whose gluten sensitivity is reasonable, it is so nice when you are understanding of those of us whose sensitivity is currently at the ridiculous level. It's really not very much fun. We are frequently accused of fanaticism and paranoia by family and friends already. It would be hard to be similarly misunderstood here as well.

Many times unsuccessful people are told to simply read labels. Well, in a perfect and honest world, that would be totally sufficient. And admittedly, with the current modern food supply system that's about the only practical thing we have to work with. But companies lie, make mistakes, are careless and sometimes are just plain ignorant of the facts. Companies are sometimes only as good as their weakest new employees. I've been in the grocery and nutrition business in the past, have meticulously read labels most of my adult life and labels are frequently wrong. Gluten sensitive people who are of a higher tolerance can fortunately weather many of those mistakes. But to a super sensitive, it can mean days of extra suffering and discouragement, or even serious health setbacks.

Most of us current veterans on this forum have been well trained by the previous generous veterans and know the basics by now. Read labels, don't ever purposely eat gluten, use common sense and watch out for cross contamination. Some of us can just stop there. But apparently, others have to go much further and be much more careful to maintain any level of wellness at all. If they want to do so by questioning those labels or the careless answers they get from poorly trained customer service departments or even by using controversial new gluten testing tools, then why not let them do what they need to do?

These are just my thoughts. This forum is for sharing new information and to give constructive help and encouragement to everyone who participates. Aside from obvious untruths like going partially gluten free or taking a fast food hamburger patty off the bun and eating it , if someone wants to try something that seems unnecessary or even a bit questionable in your opinion, you might want to carefully decide how much it really matters before you attempt to set them straight. What they want to try might not be what you need, but it might be the very thing they need.

[Gemini]

It is also entirely feasible that many who suffer from Celiac have additional food allergies and intolerances to other grains. These have little connection to Celiac, though. It would make sense that other intolerances would happen, and are probably more common than most realize (like Celiac itself) but an intolerance to corn is not a Celiac problem and it wouldn't be a gluten issue. I guess the term "super sensitive" doesn't make much sense to me. All Celiacs have to be vigilant about gluten exposure but just because a person is having a problem doesn't mean it is Celiac related. If a person finds they are sensitive to other grains, they should have allergy testing done because the difference is important. A food allergy can be improved, whereas an intolerance cannot. With a rotation diet, many people have been able to include these grains back into their diets on an occasional basis.

As for reading labels and having them be incorrect, I think it might be more feasible that many people know little to nothing about food content when initially diagnosed so might be making mistakes in interpreting them. In this litigious world we live in, to think a company would lie and make mistakes with labeling, especially for foods marketed as gluten-free, just doesn't make sense. It might depend on what kind of foods are bought also. I eat no mainstream foods from any of the big food manufacturers in this country because they use a lot of crappy ingredients like corn syrup and chemicals. I have never had a problem in 4 years with anything I have bought but I eat more basic than many. That makes a huge difference. All of the gluten-free flour blends/mixes I have used have given me zero problems and it's not because I am lucky....I was near to having a feeding tube at time of diagnosis so had a long road back, like many here. If someone is having additional problems and difficulty getting back on track with the gluten-free diet alone, other testing should be done. You don't want to get hung up thinking everything is a gluten problem, when it may not be. It would make sense that some will have additional food problems, especially with grains. I'm not sure I would call it super sensitive but other, undiagnosed issues. Once I figured out I needed to go dairy free for awhile, I was fine. I can now tolerate small amounts of dairy but it took awhile for that to happen. This is a disease that requires a lot of patience and detective work but most come out a lot more educated regarding food.

[dilettantesteph]

I'll give you non sensitive people an idea of how it is to be sensitive. I made a new dish and it gave me stomach pains. I tested the ingredients that were new to find the source of my discomfort. The test showed the McCormicks ground cumin to be about 5 ppm gluten. That is well within the FDA 20 ppm required for the gluten free label. There were only 2 teaspoons in a recipe for four. I ate about a serving at most. We have a gluten free household and I can't find another source.

I'm sure many of you out there will suppose that it is from something else, and maybe so.

To Jeremiah, I am sorry I didn't give you a better answer. I thought you were being sarcastic. There is a post here somewhere with super sensitives identifying their most trusted brands. I think I added Nu World Amaranth so that was part of the reason for this post. I think this is it:

https://www.celiac.com/gluten-free/index.ph...=32&t=54194

Good whole grain sources are:

Lungberg rice.

Buckwheat: www.thebirkettmills.com

Millet: www.edenfoods.com

Montina: www.montina.com

Teff: www.teffco.com

Quinoa: www.quinoa.net

Sorghum: www.twinvalleymills.com

Xanthan gum and Guar gum: www.gfessentials.com

We have Wegmans stores where I live and they are pretty reliable, except I don't trust the vinegar containing things, or the cereals.

Fruits and vegetables seem good usually. There can be some problems with coatings, or from being grown on straw. Personally, I haven't ever had any problems with them. I have given up on most processed food. I still trust Kinnikinnick. I am expecting an order of cornmeal from them today.

For booze, there is Woodchuck cider, Metaxa oozo and Bards Tale beer.

I hope you do check this post again to see this Jeremiah, and I'm sorry I didn't take your question more seriously to begin with.

[Mike M]

Well. I would like to ask this question to those that post, that are not sensitive. (by no means do I mean ALL posters.....Just seems to be a few on here).

Why take such offense with those of us that are very sensitive? I really would like to know the real reason. All the best, Mike

[Gentleheart]

It is also entirely feasible that many who suffer from Celiac have additional food allergies and intolerances to other grains. These have little connection to Celiac, though. It would make sense that other intolerances would happen, and are probably more common than most realize (like Celiac itself) but an intolerance to corn is not a Celiac problem and it wouldn't be a gluten issue. I guess the term "super sensitive" doesn't make much sense to me. All Celiacs have to be vigilant about gluten exposure but just because a person is having a problem doesn't mean it is Celiac related. If a person finds they are sensitive to other grains, they should have allergy testing done because the difference is important. A food allergy can be improved, whereas an intolerance cannot. With a rotation diet, many people have been able to include these grains back into their diets on an occasional basis.

As for reading labels and having them be incorrect, I think it might be more feasible that many people know little to nothing about food content when initially diagnosed so might be making mistakes in interpreting them. In this litigious world we live in, to think a company would lie and make mistakes with labeling, especially for foods marketed as gluten-free, just doesn't make sense. It might depend on what kind of foods are bought also. I eat no mainstream foods from any of the big food manufacturers in this country because they use a lot of crappy ingredients like corn syrup and chemicals. I have never had a problem in 4 years with anything I have bought but I eat more basic than many. That makes a huge difference. All of the gluten-free flour blends/mixes I have used have given me zero problems and it's not because I am lucky....I was near to having a feeding tube at time of diagnosis so had a long road back, like many here. If someone is having additional problems and difficulty getting back on track with the gluten-free diet alone, other testing should be done. You don't want to get hung up thinking everything is a gluten problem, when it may not be. It would make sense that some will have additional food problems, especially with grains. I'm not sure I would call it super sensitive but other, undiagnosed issues. Once I figured out I needed to go dairy free for awhile, I was fine. I can now tolerate small amounts of dairy but it took awhile for that to happen. This is a disease that requires a lot of patience and detective work but most come out a lot more educated regarding food.

Thank you for your thoughtful response. It is well noted.

For me personally, I took several tests for other foods and faithfully avoid them as well. I have also investigated many potential look-alike diseases suggested on this site, in books and by my physician. But after going in circles for 2 years, I have arrived back to gluten. I have repeatedly been told by mentors that I must be getting it somewhere since all other bases seem to have been covered. That is how I came to share the theory of "super sensitive" with others on this thread. It's another path to try. I don't think anyone really knows at this point what the truth is about sensitivity levels. But as research continues, I'm sure more truth will come to light. The key might be that we all may have immune systems with different intensity capabilities. Perhaps some people's autoimmune responses are more powerful than others for that reason. Maybe some of us have hair trigger immune systems and some don't.

As far as labels, I realize that litigation is certainly a huge deterent, even for would-be dishonest businesses. But I have found labels to be wrong for other, less sinister reasons like carelessness or oversight. I realize that most labels are accurate. It's just that some are not and that is the probably unavoidable problem when you are buying processed foods and are extremely sensitive at the same time. Maybe going totally unprocessed is the ultimate wise answer. Many people on this forum have done precisely that with great success.

But others who do not wish to give up all processed foods have decided to experiment with the new gluten testing kits to see if they can create a more varied, yet safe diet for themselves. I honestly don't understand the apparent hostility towards those poor kits. What if they really do work and have real scientific merit and just have a few glitches that need to be ironed out because they are so new? What's wrong with experimenting with them a little if you have the resources and the time? Have you noticed that the EZ gluten tests are given as a resource in Shari Lieberman's recent book, The Gluten Connection, certainly giving the impression that she endorses their value? I think we might at least all agree that the technology is likely valid even if the actual customer kits themselves may need a little future refining or more precise usage instructions concerning their limitations. I was also interested to read that she gives pretty firm credence to both stool and saliva tests as accurate and promising new diagnostic tools. So it's encouraging to know that some acclaimed professionals are going in this direction at least.

It's so wonderful that you are now able to use several gluten free mixes and commercial products successfully after being so desperately ill in the beginning. But if other people who have the big D as their immediate indication of glutening are saying that the very same mixes zap them, how can we argue with that? We may not understand it, but until we know more, it's who they are for now. You are absolutely right. It does take a huge amount of detective work to figure out each one's individual brand of this disease. My only point in my last post was that precisely because we are all so different, we need to cut everyone some slack and maybe not question their conclusions or difficulties so vigorously. Even though you can't see faces on this forum, you can sometimes certainly see those raised eyebrows.

[snowgirl]

. I tested the ingredients that were new to find the source of my discomfort. The test showed the McCormicks ground cumin to be about 5 ppm gluten.

What test are you using (I know I posted that , but don't think I saw an answer) - I checked on the EZ Gluten test and they say it only tests to 10ppm and that it doesn't give you a number , just that it is 10 ppm or more. I'm asking because I would like to find one that gives a number and/or goes lower on the ppm.

Thanks,

[dilettantesteph]

. I tested the ingredients that were new to find the source of my discomfort. The test showed the McCormicks ground cumin to be about 5 ppm gluten.

What test are you using (I know I posted that , but don't think I saw an answer) - I checked on the EZ Gluten test and they say it only tests to 10ppm and that it doesn't give you a number , just that it is 10 ppm or more. I'm asking because I would like to find one that gives a number and/or goes lower on the ppm.

Thanks,

It is the EZ gluten. You can do things to make the test more sensitive such as adjusting the sample size, letting it run longer, and reading the card with a really good light and magnification, and rechecking it hours later. You don't get a number, but can estimate based on the changes that you make. To get a real number, you would have to run it with solutions of known concentration which are available, but that would be a lot more expensive. It isn't certified for that, but it is good for personal use.

[snowgirl]

It is the EZ gluten. You can do things to make the test more sensitive such as adjusting the sample size, letting it run longer, and reading the card with a really good light and magnification, and rechecking it hours later. You don't get a number, but can estimate based on the changes that you make. To get a real number, you would have to run it with solutions of known concentration which are available, but that would be a lot more expensive. It isn't certified for that, but it is good for personal use.

Thanks for the info - I went ahead and ordered it. Sounds like a great idea since my son seems so much like he is getting gluten somehow and I can't think of the source but have a couple of suspicions for x contm.