"Super Sensitive" Celiacs.....

[ang1e0251]

-- Haagen Dazs raspberry sorbet (ingredients: water, raspberry puree, sugar, corn syrup, fruit pectin, lemon juice concentrate, may contain trace amounts of milk protein). I had a medium-grade CC reaction to this (and no, I don't react to corn or to dairy). I tested it and it was positive -- probably right around 20 ppm. I've suspected reactions to Haagen Dazs before, but this was the first time I've confirmed it.

Are raspberries one of those fruits that are packed in straw or have straw strewn over them when they are growing?

[lovegrov]

"Are raspberries one of those fruits that are packed in straw or have straw strewn over them when they are growing?"

Raspberries grow on canes well above the ground level.

[dilettantesteph]

  ang1e0251 said:

-- Haagen Dazs raspberry sorbet (ingredients: water, raspberry puree, sugar, corn syrup, fruit pectin, lemon juice concentrate, may contain trace amounts of milk protein). I had a medium-grade CC reaction to this (and no, I don't react to corn or to dairy). I tested it and it was positive -- probably right around 20 ppm. I've suspected reactions to Haagen Dazs before, but this was the first time I've confirmed it.

Are raspberries one of those fruits that are packed in straw or have straw strewn over them when they are growing?

Straw can be used as a mulch when growing raspberries:

www1.agric.gov.ab.ca/$department/deptdocs.nsf/all/agdex3466

But, as lovegrov states, the canes are above ground level. My raspberries are at least 6 inches above the ground.

[weluvgators]

  Mike M said:

Of course you know that beans in themselves are safe. If you are extra sensitive (what this thread was made for no?) there can be CC issues and gluten just does not wash off readily. The same equipment that harvests the beans in our area, also harvests the wheat. The winter wheat is taken off in early June around here and then the farmers "double crop" with beans. They just change the combine heads to do this at harvest time, using the same trucks and the same grain storage silos as the wheat. Mike

Thanks, Mike, for motivating me to understand more about the food that passes our lips!!

I am not a farmer, nor am I suggesting that I understand farming practices. However, I live in the Heartland and am surrounded by mainly corn, soybeans and wheat fields. Today at church I found a gentleman that is a commercial farmer and well educated in farming practices. I was thrilled to hear that he is a proud non-GMO soybean farmer. We didn't have a chance for a full conversation, but he was able to confirm some quick details for me. He also invited us out to see his equipment and learn even more about the farming methods that bring so much food to so many people. He also invited us out for harvest, and we will probably accept his invitation to help with the soybean and corn harvests . . . but not the wheat harvest!

The winter wheat has sprouted in this area and is typically harvested in June. A farmer will typically use the same equipment to then harvest his soybeans in late September - you only need to change the settings. The same combine is used with a different attachment (forget the name) to harvest the corn. I didn't get a chance yet to ask about the transport and storage facilities. I also plan to ask about cleaning procedures for equipment.

I am excited to learn more about this, so please let me know if there are any specific questions that you would love to have answered. I heard a brief list of this man's qualifications from his cousin who introduced us, and it was an impressive list! Please let me know if you want any other details of my explorations in the Heartland!

Keila

[dilettantesteph]

  weluvgators said:

Thanks, Mike, for motivating me to understand more about the food that passes our lips!!

I am not a farmer, nor am I suggesting that I understand farming practices. However, I live in the Heartland and am surrounded by mainly corn, soybeans and wheat fields. Today at church I found a gentleman that is a commercial farmer and well educated in farming practices. I was thrilled to hear that he is a proud non-GMO soybean farmer. We didn't have a chance for a full conversation, but he was able to confirm some quick details for me. He also invited us out to see his equipment and learn even more about the farming methods that bring so much food to so many people. He also invited us out for harvest, and we will probably accept his invitation to help with the soybean and corn harvests . . . but not the wheat harvest!

The winter wheat has sprouted in this area and is typically harvested in June. A farmer will typically use the same equipment to then harvest his soybeans in late September - you only need to change the settings. The same combine is used with a different attachment (forget the name) to harvest the corn. I didn't get a chance yet to ask about the transport and storage facilities. I also plan to ask about cleaning procedures for equipment.

I am excited to learn more about this, so please let me know if there are any specific questions that you would love to have answered. I heard a brief list of this man's qualifications from his cousin who introduced us, and it was an impressive list! Please let me know if you want any other details of my explorations in the Heartland!

Keila

Thank you for that information. Maybe that explains some of those other food sensitivities found through elimination diets.

[Lisa]

When I buy fresh product, I wash it well under running water before I cook it and eat it, much the same way that I would wash a plate or a pan before I re-used it again.

I see no alarm nor concern from field cross contamination, with the exception of possibly oats which are processed in much the same manner as wheat.

[Sailing Girl]

  Momma Goose said:

I see no alarm nor concern from field cross contamination, with the exception of possibly oats which are processed in much the same manner as wheat.

My understanding has been that oats are a concern if they are grown in a non-dedicated field, which also could contain some wheat grass -- not because they're processed in much the same manner as wheat.

Weluvgators, thanks so much for your information! I hope you report back again after you meet with that friendly farmer. As a super-sensitive, it's very helpful to me to understand where some of the known cross contamination is taking place -- sad to think it's right there at harvest.

For those who are doubters, I'm not sure I see the difference between your food touching wheat as it's being harvested because of a shared combine, or touching wheat during the cooking process because of a shared grill -- cross contamination is cross contamination, regardless.

[Lisa]

  Sailing Girl said:

My understanding has been that oats are a concern if they are grown in a non-dedicated field, which also could contain some wheat grass -- not because they're processed in much the same manner as wheat.

We Luv Gators, thanks so much for your information! I hope you report back again after you meet with that friendly farmer. As a super-sensitive, it's very helpful to me to understand where some of the known cross contamination is taking place -- sad to think it's right there at harvest.

For those who are doubters, I'm not sure I see the difference between your food touching wheat as it's being harvested because of a shared combine, or touching wheat during the cooking process because of a shared grill -- cross contamination is cross contamination, regardless.

BECAUSE...I can see the oats milled or processed with an occasional wheat cross contamination as it's packaged and presented.

I can't see my zucchini, beans, squash, nor my corn, nor my tomatoes, watermelon, cantaloupe with tiny pieces of wheat embedded or processes into them. Whatever dirt or debris I see, I rinse off, as most would do.

The fear is just not there (in my opinion). There is no "known cross contamination" as you speak. There is no "hidden agenda" here. If you know of any substantial documentation, that supports the dangers of harvested foods from a previous wheat field, please post it.

I think it's very unfair for the newbies entering this site, to be overwhelmed with the "what if's" and it creates unnecessary fear.

[Jestgar]

  Momma Goose said:

BECAUSE...I can see the oats milled or processed with an occasional wheat cross contamination as it's packaged and presented.

I can't see my zucchini, beans, squash, nor my corn, nor my tomatoes, watermelon, cantaloupe with tiny pieces of wheat embedded or processes into them. Whatever dirt or debris I see, I rinse off, as most would do.

I agree.

Anyone with standard food cleanliness routines shouldn't have any problems. Farm machinery cut the stalks, not the grain. Gluten is a storage protein inside the grain. The chance of getting a piece of the inside of a grain of wheat in your food seems pretty minimal, however many other types of food are harvested with that same piece of machinery.

The further processing of both oats and wheat are similar, increasing the chance of CC.

[Sailing Girl]

  Jestgar said:

The further processing of both oats and wheat are similar, increasing the chance of CC.

  Momma Goose said:

BECAUSE...I can see the oats milled or processed with an occasional wheat cross contamination as it's packaged and presented.

Yes, EXACTLY. Both processing and packaging of foods on the same equipment can lead to cross contamination, starting at the point of harvest and continuing through the food supply chain, just as it does with oats. My point is that there are OTHER foods (such as soybeans, as Keila has pointed out, and beans, as Mike has pointed out) that also are harvested and processed using the same equipment as wheat. That means these other foods can wind up with a little tiny bit of wheat in them as they're processed through our food supply chain and wind up in supposedly "gluten-free" foods -- just as non-certified oats (with a little tiny bit of wheat contamination) can wind up in non-certified oatmeal.

  Momma Goose said:

I can't see my zucchini, beans, squash, nor my corn, nor my tomatoes, watermelon, cantaloupe with tiny pieces of wheat embedded or processes into them. Whatever dirt or debris I see, I rinse off, as most would do.

We're not talking about washing off your watermelon here. I'm not talking about fresh produce at all. Obviously, anyone can see that kind of contamination. What we're talking about is cross contamination in processed foods (such as soy), and minimally processed foods (such as commercially packaged beans or spices or even tomatoes) that *shouldn't* have gluten in them, but do.

My daughter and I have reacted to three foods in the past 10 days -- one jar of organic tomato paste, an organic spice, and a mainstream "gluten-free" sorbet -- all of which are minimally processed, and all of which are supposed to be "gluten-free." We do not have additional intolerances -- when we react, we're reacting to gluten. After our reactions, we tested some of the things we've eaten and found gluten in these three foods -- below the 20ppm allegedly "gluten free" proposed standard, to be sure, but it was way plenty to make us react.

So how did gluten wind up in our tomato paste and our spices? There had to be cross contamination of harvesting or processing equipment somewhere between the field and the jars. I don't know *where* that cross contamination occurred, or whether it occurred from the farm equipment or farther up the chain, in the storage silos or on shared equipment in the processing plant. But I know it did occur, because 1) we had a gluten reaction to those foods, and 2) they tested positive for gluten.

  Momma Goose said:

I think it's very unfair for the newbies entering this site, to be overwhelmed with the "what if's" and it creates unnecessary fear.

This is a thread for super-sensitives. I've learned a tremendous amount from this thread and my health is better because of it. I'm nowhere near a newbie (I've been gluten-free for five years and super-strict for 20 months now), but I really, really wish I had had this information as a newbie. If I had known then what I now know, I would have recovered so much faster, and perhaps wouldn't have some of the lingering health issues I now have.

There are so many people who come to this forum still sick, looking for answers. Many say they eat only certified gluten-free food, and have cleaned out their homes using all the suggestions from this forum, but they're still reacting and they don't know why. This thread has given me some answers. Yes, it can be overwhelming (and potentially frightening) to know how deeply gluten grains penetrate into our food supply chain. But knowledge is power -- if I know where my food can get contaminated, then I potentially can avoid it. Putting my head in the sand isn't going to help my health improve.

[Jestgar]

  Sailing Girl said:

There had to be cross contamination of harvesting or processing equipment somewhere between the field and the jars.

So then what's your plan? Stop eating?

I still don't believe that contamination can happen at the level of harvest. It's still also possible that your reactions aren't gluten. I know that some of mine are chemical.

Have you thought about just buying single ingredient foods and making your own meals from scratch?

[ang1e0251]

I don't think she is arguing so much about where the cc happened, she's only stating that she and her daughter reacted and testing showed gluten present. You're comments imply that she is not making rational decisions. That is not logical to me. The cause and effect are clear. Your comment sounds like the kinds of comments I get from my dr. Let's not get into wars of words here.

As pointed out, this thread is about super sensitives. Just the sort of folks who might react to cc wherever it might occur. Don't say CC cannot happen in the field when salmonella has shown up so many times from urinating in produce fields, etc.

If newbies come to this thread , the topic should clue them that they are reading about a special group that may not purtain to them. If they are confused, they have the ability to ask questions and read other threads.

Let's respect other's sensitivities.

[weluvgators]

I found this article and thought it was interesting:

https://www.celiac.com/articles/191/1/Cross...ment/Page1.html

[Jestgar]

  ang1e0251 said:

The cause and effect are clear.

I guess I don't think they're clear.

First off I have to state that I think the testing strips are of limited value, and that colors my opinion.

So unless her daughter ate nothing but that jar of tomatoes, the cause really isn't clear. She could be blaming cc on something her daughter got her hands on while they were out.

[Sailing Girl]

  Jestgar said:

So then what's your plan? Stop eating?

Like many people I've seen write on this forum, there have been times I've been so depressed and discouraged about constant reactions that I've been tempted to stop eating. I was reacting to foods that are supposed to be gluten-free, and I was almost constantly sick.

But now, thanks in part to this thread, I've gathered the information I need to stay clear of gluten cross-contamination more often, and so I'm not afraid to eat anymore, because I'm more confident that I can avoid painful, exhausting, week-long reactions.

  Jestgar said:

I still don't believe that contamination can happen at the level of harvest. It's still also possible that your reactions aren't gluten. I know that some of mine are chemical.

After five years, I know how I react to gluten. The reactions I've reported in this thread are gluten reactions. I do not react to other foods. I've done repeated elimination diets and challenges to confirm that. My sole intolerance is to gluten, but I react to tiny, tiny amounts.

  Jestgar said:

Have you thought about just buying single ingredient foods and making your own meals from scratch?

That's what I'm doing. In fact, as I pointed out earlier in this thread, I've always made all my own meals from scratch. But now, I'm realizing I also have to make all my own condiments and spices from scratch, as well, because so many are contaminated. So this summer I'll be growing my own leaf spices and drying and canning my own tomatoes (purchased fresh from my local farmstand, where they do not grow wheat).

  ang1e0251 said:

I don't think she is arguing so much about where the cc happened, she's only stating that she and her daughter reacted and testing showed gluten present. You're comments imply that she is not making rational decisions. That is not logical to me. The cause and effect are clear. Your comment sounds like the kinds of comments I get from my dr. Let's not get into wars of words here.

As pointed out, this thread is about super sensitives. Just the sort of folks who might react to cc wherever it might occur. Don't say CC cannot happen in the field when salmonella has shown up so many times from urinating in produce fields, etc.

If newbies come to this thread , the topic should clue them that they are reading about a special group that may not purtain to them. If they are confused, they have the ability to ask questions and read other threads.

Let's respect other's sensitivities.

Thanks for your kind words, Angle. That's exactly my point -- the cause (gluten in supposedly "gluten-free" foods) and the effect (a reaction) are clear. It doesn't matter *where* the cross contamination happened -- the fact is that it happened somewhere. According to the U.S. Department of Agriculture, in the U.S., wheat is the third most common crop (after sugar cane and corn). Barley is also in the top 10. There are millions of tons of gluten grains grown, harvested, transported and processed each year in the U.S.

I do not believe that all farmers and truck owners clean their equipment between crops thoroughly enough to prevent cross contamination -- which means that, yes, cross contamination potentially can start at harvest. Of course, it can continue throughout the food supply chain.

Is *everything* contaminated? No, of course not. But many, many things are. Spices, for example, are hit-and-miss -- but many have trace gluten in them, enough to make most of them suspect.

This information has the potential to really help people who are still sick, even though they're eating "gluten-free" foods and have gluten-free homes. How can it help? Well, they may need to start doing what some of us super-sensitives are doing -- grinding our own spices, making our own condiments, potentially suspecting *everything* that's ever been even minimally processed.

Is it a pain? Yes, it's a huge one. Is my health (and my daughter's health) worth it? Yes, absolutely.

[dilettantesteph]

I am fairly new, having been diagnosed Nov 2007. I really wish that I had known about all this cross contamination stuff from the start. I would have started out with a diet of fresh fruits and vegetables (not meats only because I am vegetarian) and grains from organizations which only grow and process that single grain. Then I would have waited until I was feeling better. Then I would have added foods one at a time to find out which ones made me sick. It would have been a boring way to eat for maybe a long time, but oh, so much better than constantly getting glutened. I have arrived at that boring diet anyway, but only after a lot of misery. There are so many foods that give me gluten reactions that I was told on this forum were safe. I would say that these assurances made me stay sick a lot longer than I would have if I had been "scared" from the start by being given information about cross contamination.

I think that those people lucky enough not to be so sensitive realize that a lot of this cross contamination stuff doesn't apply to them. They know that things that make some of us sick don't make them sick. They continue to eat these things as they should do. I think that people are generally intelligent enough to think for themselves and decide whether or not something makes them sick by watching their reactions.

[Sailing Girl]

  Jestgar said:

I guess I don't think they're clear ...

... unless her daughter ate nothing but that jar of tomatoes, the cause really isn't clear. She could be blaming cc on something her daughter got her hands on while they were out.

Nope, for several reasons:

1) DD is eight, extremely bright, can read labels, and knows better than to "get her hands on something" and eat it without checking it. In fact, she's known better since she was four.

2) We hadn't been out that day, and DD ate only whole foods (nothing processed) for breakfast and lunch. In addition, we shared breakfast and lunch, and I didn't react to anything that day.

3) DD ate almost the entire jar of tomato paste by herself, because she tried it and really liked it.

4) My daughter, like me, has reactions on a schedule. She reacted to food she ate at dinner.

5) The tomato paste tested positive for gluten via the testing strips.

  Jestgar said:

First off I have to state that I think the testing strips are of limited value, and that colors my opinion.

You're entitled to your opinion of the test strips, Jestgar. Here's mine:

For the record, I don't believe the test strips are perfect. They'll only test reliably down to 10ppm or so, and I react to less than 10ppm. In addition, false positives are possible when testing a turmeric-containing food (such as mustard), and false negatives occur in foods containing soy sauce (because the fermenting process used in soy sauce breaks down the protein). This limits their reliability in testing condiments and spices, obviously.

However, I have a medical science background and strong investigative skills, and so I'm quite qualified to evaluate the testing on its merits. I have concluded that the testing, when performed correctly and also combined with other data (such as known reactions), is an invaluable tool in finding hidden gluten.

[Sailing Girl]

  weluvgators said:

I found this article and thought it was interesting:

https://www.celiac.com/articles/191/1/Cross...ment/Page1.html

Great information, Keila -- it explains a lot about CC in beans and other grains. Thanks!

[rumbles]

What gives?

Board rule number one calls for respect for each board member. According to Wiki, the definition of respect is esteem for, or a sense of the worth or excellence of, a person . . . . I

[Jestgar]

  rumbles said:

I

[Mtndog]

  weluvgators said:

Has anyone experienced issues when interacting with other people that have trace gluten in their personal space? Examples I can think of are people with gluten eating pets (like dogs that are in close proximity to their owners) and people that use gluten containing personal products (like hair sprays).

Yes- absolutely! If your dog eats gluten and then kisses you you can get glutened (same as if your partner drinks beer and kisses you). This is FAR more likely than your oranges being contaminated.

Even if your oranges were packed in straw (which BTW is usually mown grass- not wheat and certainly not wheat protein) you'd be more likely to react to a cc like above.

  Jestgar said:

I agree.

Anyone with standard food cleanliness routines shouldn't have any problems. Farm machinery cut the stalks, not the grain. Gluten is a storage protein inside the grain. The chance of getting a piece of the inside of a grain of wheat in your food seems pretty minimal, however many other types of food are harvested with that same piece of machinery.

The further processing of both oats and wheat are similar, increasing the chance of CC.

Thank you Jestgar- I think we're forgetting here that gluten is not a big wheat stalk- it's a protein.

  Jestgar said:

I guess I don't think they're clear.

First off I have to state that I think the testing strips are of limited value, and that colors my opinion.

So unless her daughter ate nothing but that jar of tomatoes, the cause really isn't clear. She could be blaming cc on something her daughter got her hands on while they were out.

This is why it's hard and frustrating and easy to pin the blame on things we ate rather than other sources or intolerances.

I'm going to stick my neck out here. When I first went gluten-free, I thought I reacted to many thing because of gluten. Four year and many, many tests and confounding doctors appointments later I have realized that probably 2 out of 3 times I was NOT reacting to gluten but having the symptoms of something else entirely (Lyme and co-infections). How do I know? As I've treated the Lyme, the amount I react to gluten has diminished.

I accidentally ate something with gluten in it over the summer and had an entirely DIFFERENT reaction than the reaction I associated with gluten. I am not implying that any of you are reacting because of my issues but if you are stubborn and convince yourself that it is ONLY gluten (like I did) and refuse to look at any other possibilities, you may never find out what you are REALLY reacting to or what is REALLY making you sick.

[Fiddle-Faddle]

I think it could go both ways. The people who are sure of their own reactions may very well be entirely correct. Or, like Mtndog, they may have an undiagnosed coexisting condition that is causing their reactions.

The point is, it's perfectly fine to politely suggest other possibilities, but it sure seems like some of the mods have (perhaps unintentionally)come across as dismissive and disrespectful to those posting their problems.

We have enough of this from doctors. We certainly don't need it on a support forum.

[Jestgar]

  Fiddle-Faddle said:

The point is, it's perfectly fine to politely suggest other possibilities, but it sure seems like some of the mods have (perhaps unintentionally)come across as dismissive and disrespectful to those posting their problems.

If you feel like a post is intentionally rude, report it. If you think it's unintentionally rude, either post something to that effect, or pm the person. It's really hard to tell how your words are coming across.

I'm frequently abrupt because I'm abrupt, some people are abrupt because they are intending to be rude. You can't always tell the difference in type, especially if you only occasionally see some person's posts.

So please, everyone, say something.

[miles2go]

  Jestgar said:

So please, everyone, say something.

Well, I can see both sides of the argument as having merits. But I'm a Gemini, middle-child sort-of-a-thing.

I moderate the public e-forum at the University of Maine and this is tame in comparison.

I'm not sure if I'm a super sensitive or not. When I get cc'd, the reaction time is about 15 minutes and the last one was a pot that contained Cream of Wheat (ironically, for the dog who has digestive problems) and had been washed three times.

Margaret

[MaryJones2]

  Mtndog said:

I'm going to stick my neck out here. When I first went gluten-free, I thought I reacted to many thing because of gluten. Four year and many, many tests and confounding doctors appointments later I have realized that probably 2 out of 3 times I was NOT reacting to gluten but having the symptoms of something else entirely (Lyme and co-infections). How do I know? As I've treated the Lyme, the amount I react to gluten has diminished.

I accidentally ate something with gluten in it over the summer and had an entirely DIFFERENT reaction than the reaction I associated with gluten. I am not implying that any of you are reacting because of my issues but if you are stubborn and convince yourself that it is ONLY gluten (like I did) and refuse to look at any other possibilities, you may never find out what you are REALLY reacting to or what is REALLY making you sick.

Bev I completely agree with you on this. I used to be hyper sensitive and the most basic things would bother me. I have several other conditions and as I stabilized those and my health improved my CC reactions diminished significantly. The last condition was something so simple that I refused to admit it was an issue and as soon as I treated it I could tolerate so many things that I couldn't even smell for the past 3+ years.