"Super Sensitive" Celiacs.....

[Mike M]

I find that by simply making my own food, I eliminate any need to buy expensive test strips, or stress over getting CC'd.

Wanted to second the "nailed it". I still use them on occasion. Am I glad I did use them and that they are available? Oh yes.

I wanted to sum up real quick what I have learned from these strips (in no particular order). I have learned that just because the label on the package says "gluten free" means nothing to me. It more than likely has some amount of gluten in it (I had no idea this could be). I have learned that foods that don't even say "gluten free" on the label often times are indeed "cleaner" with regards to gluten content than their counterparts, (I am talking about gluten free ingredient foods here). I have learned that not all wines are safe just because the consensus of the celiac community say they are. Same goes for vinegar, I have found that unless they are naturally fermented (the wine/vinegar) I can not trust it, I react to store bought brands of vinegar.

Name brand spices in general are often times CC'd including the ones that are organic. I grind all of my own from whole without any trouble and this includes black pepper and salt. I make my own ketchup, mustard, barbecue sauce. steak sauce, salad dressings like Italian ect ect again, because of the vinegar issue. I do use boxed tomatoe sauce for the ketchup/barbecue sauce and add naturally fermented vinegar so it will keep. I also can it, so I don't have to make it so often. I do grind my own whole mustard seeds and use whole tumeric (if you want to know the trick to making good mustard, let me know, there is a trick to it). I could not find a ground mustard seed that would pass the gluten test. Did you know that iodized salt also has corn in it (nothing to do with gluten, just one of the discoveries that I made along the way) It is put in there to preserve the iodine.

I know I got one big education from using these test strips and just as sure as I am typing this message, they allowed me to heal in a very timely manner. Mike

[Sailing Girl]

I find that by simply making my own food, I eliminate any need to buy expensive test strips, or stress over getting CC'd.

I do make all my own food. ALL OF IT. I've become a pretty good cook, and my friends and family enjoy the meals I make. I buy grass-fed beef, free-range chicken and organic vegetables and cook them at home. I get eggs from a local farm. I was in a Wal-Mart today to buy aluminum foil for a non-food project and was amazed at all the cr*p they sell there masquerading as food. I never bought much of it and now I don't buy any of it.

Where I'm getting tripped up (and where I suspect Steph and many others also are getting tripped up) is in the spices/sauces. I no longer buy pre-made sauces in jars, as I've been glutened by them too many times. But I've found gluten in so many places where it shouldn't be: in the Thai Kitchen fish sauce, which lists three ingredients (anchovies, cane sugar, and water), in plain hummus, in single-ingredient spices, and in countless other places. Not in full meals. Not in what I used to consider "processed" foods (the junk they sell at the supermarket). In the simple spices and condiments we need to make food tasty and interesting.

If I was willing to eat plain broiled meat and plain steamed veggies for every meal, no spices, nothing at all to make it taste good, then I wouldn't need the test strips.

I'm not willing to do that, which leaves me two choices: grow and harvest all my own spices and anything else not sold fresh at the farm market (chickpeas come to mind), catch my own anchovies for the Thai fish sauce (because they don't sell those fresh, they only come canned), and basically make everything myself that isn't sold in its original, fresh form -- OR -- do as much of that as I am able, but also buy a few products that are hard to grow/catch/create myself but that also make food taste good, and then use the test strips to make sure they're absolutely safe.

I choose to do it the "easy" way -- I'm not very good at fishing. That's my two cents.

[Mike M]

I find that by simply making my own food, I eliminate any need to buy expensive test strips, or stress over getting CC'd.

Wanted to second the "nailed it". I still use them on occasion. Am I glad I did use them and that they are available? Oh yes. I want to sum up real quick what I have learned from these strips (in no particular order). I have learned that just because the label on the package says "gluten free" means nothing to me. It more than likely has some amount of gluten in it (I had no idea this could be). I have learned that foods that don't even say "gluten free" on the label often times are indeed "cleaner" with regards to gluten content than their counterparts, (I am talking about gluten free ingredient foods here). I have learned that not all wines are safe just because the consensus of the celiac community say they are. Same goes for vinegar, I have found that unless they are naturally fermented (the wine/vinegar) I can not trust it, I react to store bought brands of vinegar. Name brand spices in general are often times CC'd including the ones that are organic. I grind all of my own from whole without any trouble and this includes black pepper and salt. I make my own ketchup, mustard, barbecue sauce. steak sauce, salad dressings like Italian ect ect again, because of the vinegar issue. I do use boxed tomatoes for the ketchup/barbecue sauce and add naturally fermented vinegar so it will keep. I also can it. I do grind my own whole mustard seeds and use whole tumeric (if you want to know the trick to making good mustard, let me know, there is a trick to it). I could not find a ground mustard seed that would pass the gluten test. Did you know that iodized salt also has corn in it (nothing to do with gluten, just one of the discoveries that I made along the way) It is put in there to preserve the iodine. I know I got one big education from using these test strips and just as sure as I am typing this message, they allowed me to heal in a very timely manner. Mik

[Mtndog]

Wanted to second the "nailed it". I still use them on occasion. Am I glad I did use them and that they are available? Oh yes.

I wanted to sum up real quick what I have learned from these strips (in no particular order). I have learned that just because the label on the package says "gluten free" means nothing to me. It more than likely has some amount of gluten in it (I had no idea this could be). I have learned that foods that don't even say "gluten free" on the label often times are indeed "cleaner" with regards to gluten content than their counterparts, (I am talking about gluten free ingredient foods here).

Sigh.

I have learned that not all wines are safe just because the consensus of the celiac community say they are. Same goes for vinegar, I have found that unless they are naturally fermented (the wine/vinegar) I can not trust it, I react to store bought brands of vinegar.

Mike- Can you be more specific? Which brands have you reacted to?

Name brand spices in general are often times CC'd including the ones that are organic. I grind all of my own from whole without any trouble and this includes black pepper and salt. I make my own ketchup, mustard, barbecue sauce. steak sauce, salad dressings like Italian ect ect again, because of the vinegar issue. I do use boxed tomatoe sauce for the ketchup/barbecue sauce and add naturally fermented vinegar so it will keep. I also can it, so I don't have to make it so often. I do grind my own whole mustard seeds and use whole tumeric (if you want to know the trick to making good mustard, let me know, there is a trick to it). I could not find a ground mustard seed that would pass the gluten test. Did you know that iodized salt also has corn in it (nothing to do with gluten, just one of the discoveries that I made along the way) It is put in there to preserve the iodine.

Do you have any documentation to back this up? Have you spoken to any companies?

I know I got one big education from using these test strips and just as sure as I am typing this message, they allowed me to heal in a very timely manner. Mike

I think you've learned more about what YOU react to- it varies with individual- not ncessarily just gluten.

I'd hate (as a former new member and moderator) for a new person to come on here and believe that all sauces, spices, wines, vinegars are CC'd when that is not true at all. In fact., I know that the spice mixes I use (Victoria's) are gluten-free and I have never reacted.

And yes, I am a super-sensitive celiac

[MaryJones2]

Mike, how did you verify that spices were contaminated? Did you speak with the companies about potential contamination?

For the super sensitives I want to rave about Organicville products. I've exchanged emails with the owner and they are very commited to serving us. They require their suppliers to guarantee their ingredients and follow very dilligent manufacturing practices. Everything is made on dedicated lines. Their ketchup is awesome. It's the only one I've been able to tolerate.

[jerseyangel]

Janet, thank you so much!!

I just checked out Organicville's website and discovered that their products are available at the grocery store around the corner from me! I'm looking forward to trying that ketchup.

[jerseyangel]

I think you've learned more about what YOU react to- it varies with individual- not ncessarily just gluten.

Talk about nailing it...this is what I was getting at. This thing is so individual that our reactions vary, there may or may not be other sensitivities at play, and I just don't think that we can make blanket statements that give newbies, especially, the wrong idea.

[lizard00]

I agree, we cannot make generalizations and blanket statements. This disease affects everyone of us individually, my symptoms can be similar to another person's, but that doesn't mean we are in the exact same situation.

In the beginning, I thought I glutened myself a few times, when in fact, I was learning about other sensitivities. Once I learned what my true gluten reaction was, it was much easier to identify other problems.

I make most of my food too, (not so much recently, but anything I don't make comes from tried and true sources) partially because I have yet to gluten myself through my own cooking, and because there's a lot of extra crap in food that I just have no interest in eating. I make my own hummus and tomato sauce, and things of that sort, not just because I want to make sure it's gluten free, but because it has a lot of extra stuff that I don't think we should eat, or because there's something else in it that I react to. The key to me is that gluten is not the only thing that causes me reactions. As celiacs, we have a tendency to think that everything is gluten related; whether we just have a virus or are sensitive to something else, our knee jerk reaction is "I've been glutened!."

I have not, however, been glutened by a pure spice. Sauces are a completely different beast, so I tend to avoid most of them. I have not been glutened by wine, although I am very sensitive to sulfites, which ironically, feels a little similar to a gluten reaction. Nor have I been glutened by fresh meats, fruits or vegetables.

However, I still consider myself to be super sensitive. I have been glutened by the unseen crumb before on a salad. I have gotten burned because of Lay's potato chips, Wendy's fries, and refuse to eat Cool Ranch Doritos and McDonald's fries because I'm too chicken. When I read labels I don't just look for "gluten free", because there's a lot of stuff that I can eat that is not labeled that way. I look for what's in it, what other things are manufactured by the company, and line sharing. Gluten free is not necessarily a green light for me, but could be completely safe for someone else.

Enough ranting...

[Mtndog]

Talk about nailing it...this is what I was getting at. This thing is so individual that our reactions vary, there may or may not be other sensitivities at play, and I just don't think that we can make blanket statements that give newbies, especially, the wrong idea.

Yes- in the beginning I thought I got glutened by peanut butter!!!!! Jif I believe- turns out I am intolerant to legumes and Jif contains 2- peanuts and soy!

Also, I used to react to MANY of Amy's products (they once batch tested and I had reacted to 33 ppm!) but since they started their dedicated facility for certain products I can now eat their pizza with no problem!

Oh and I eat Sunbutter instead of peanut butter!

[MaryJones2]

Bev,

What other products from Amy's do you eat? Are the ones that say gluten-free made in the dedicated facility? I also see no gluten ingredients and wonder what the difference is between the two. I recently discovered sunbutter and love it!

Janet

[MaryJones2]

I just checked out Organicville's website and discovered that their products are available at the grocery store around the corner from me! I'm looking forward to trying that ketchup.

I love them. All of their stuff is gluten-free. They use wheat-free tamari for their soy products. I wasn't expecting the owner to reply to me and was really impressed with how much time she took answering my quite detailed questions and she really wanted to make sure that I felt comfortable with her answers and manufacturing processes.

[dilettantesteph]

Oh man, I don't know how you can do the vegetarian deal, my hat goes off to you and everyone else that can pull this off. I just could not deal with it.

They also have a lot of gluten free vegan choices. If you go, be sure and ask for the "gluten free" menu. They actually have one. At ours, they serve gluten free on a different plate so there is no confusion.

Still getting more sensitive at 1.5 years.......Well, I think if we are the extra sensitive type and are still getting mild gluttenings on a somewhat regular basis (every week or two) the antibodies just are not going to go away. As of right now (knocking on wood real hard here) I seem to be getting less sensitive (dang I hope I did not jinx myself). All the best, Mike

I checked with my local forum and was told that the PF Changs here only has streamed rice and vegies for vegetarian. Not too exciting. Too bad. Still could be good for my son though.

[weluvgators]

I find that by simply making my own food, I eliminate any need to buy expensive test strips, or stress over getting CC'd.

I am glad that you have been able to resolve your issues so simply. I am also SO glad that others here have been willing to share the information that they have learned, and I am greatly appreciative of the information shared from those with a super sensitive perspective.

We started on this journey of ours just 2 1/2 years ago when we came to grips with the importance of gluten elimination for my second child. Since she was nursing, I eliminated gluten for myself. 1 year ago, we came to understand that we needed to take the gluten elimination even more seriously, as we were having issues from cross contamination sources. Today, I am striving to find my groove feeding myself (was "asymptomatic" before elimination for my DD, and I now just feel grateful for her opening my eyes to the problem gluten is for me) and three incredibly gluten sensitive, celiac prone children (now 18 months old, almost 4 years old and 5.5 years old). I have been in so many circles about this, and we are gaining some real resolution thanks to help that we have gotten from the information shared here. I wish I had time to offer explanations of the difficulty of maintaining a truly gluten free status with such young children, but the nature of my situation doesn't permit me many chunks of time. Please understand that we are all on different journeys!

Here is a sampling of a story that even I am struggling to comprehend . . . and if you just think I am crazy, well, get in line. ;-) I am grateful that there were others in my home when this happened . . . oh, but that was HOW it happened. We had friends visiting that are well aware of our situation, and they follow our protocols. They brought NO food into our home, and they washed their hands when they arrived. They spent the night, and this morning our kids were playing on THEIR laptop computer. I finally got our breakfast on the table - ALL made by me, in our pots, in our kitchen. We had various whole foods that are a normal part of our diet. Shortly after we started eating, one of the guests made a comment about my older DD looking strange. Then another guest commented on my younger DD looking sunburned. I went over to look at them closer and realized that they were both having some strange reaction that left the older one with splotchy red spots all over her body with swelling in her face - she simply didn't look good - it looked like a reaction that was more physically dramatic than anything we have seen before. She complained of a headache. Her sister looked like she was reacting to something as well. They each had a different meat, but had the same eggs. I racked my brain wondering what they had eaten, but nothing was out of normal. THEN I realized that they had not washed their hands before eating! Their younger brother who had NOT used THEIR computer showed no sign of reaction.

Past experience has shown me that chasing any potential gluten source is the one that typically gets me the quickest results. I am trying to change over three decades of eating, lifestyle and social habits in a relatively short time, all while juggling the needs of a young family. I appreciate all of those who are understanding, persistent and willing to share their stories that have benefited our family on this journey. I would especially like to thank Mike M and dilettantesteph, as the stories and information that they have shared have been instrumental in our family taking some recent, big strides towards health on this journey! They have helped me understand some of the gluten issues that were eluding me!!

A big thanks and hug of gratitude from one super silly family! Keila

[dilettantesteph]

You are welcome. It sounds like you have your hands full.

Personally, I haven't eaten anything ready to eat for a long time. Cooking for yourself isn't always the answer. I mentioned elsewhere on this site that I got sick from a certain dish that I made. I used McCormicks spices. Reliably gluten free, right? After getting sick I started testing questionable things. It ended up being my ground cumin. It was around 5 ppm so, well within the gluten free definition of 20 ppm. There were two teaspoons in a dish to serve 4. Well, my son helped me cook, maybe he put in tablespoons instead of teaspoons. But really, how much gluten could I really have eaten? So I bought unground cumin, tested it (negative) and ground it myself. The nice thing about getting it unground it that you can test a big sample and know that it is highly gluten free.

As someone mentioned a little ways back, unless you are willing to eat only fresh produce with no spices, you are susceptible to a reaction.

I need to really thank Mike M because I had no idea how much gluten was in everything until I started reading his posts. It took me a long time, and my own testing and personal experience getting sick, and eliminating positive things and getting better, to believe him. The thing about cross contamination is that not every item is positive. But, if one is, any could be. Yesterday and the day before I found more low amounts of gluten in things that I eat in my daily diet. All things reported to be gluten free, and all gluten free to 20 ppm. A can of beans, mint, pine nuts. Maybe I won't be so sensitive if I can get rid of all this stuff.

Where do you get reliably gluten free beans? All the ones I've found are processed on shared facilities.

I ramble. Anyone know of reliable gluten free beans?

[Mike M]

Sigh.

Mike- Can you be more specific? Which brands have you reacted to?

Do you have any documentation to back this up? Have you spoken to any companies?

I think you've learned more about what YOU react to- it varies with individual- not ncessarily just gluten.

I'd hate (as a former new member and moderator) for a new person to come on here and believe that all sauces, spices, wines, vinegars are CC'd when that is not true at all. In fact., I know that the spice mixes I use (Victoria's) are gluten-free and I have never reacted.

And yes, I am a super-sensitive celiac

I really want to respond to your post, however, it looks like I am now being censored (my post I think was deleted, I posted it twice, the first time, I thought I made a posting mistake, posted it again and it is gone). In my opinion, (if this is the case) we are doing a great disservice to all posters, in particular "the newbies" if a poster can not discuss this disease in full detail and not withhold what they are finding without being censored, we as a community are doomed. All the best, Mike

[Lisa]

I really want to respond to your post, however, it looks like I am now being censored (my post I think was deleted, I posted it twice, the first time, I thought I made a posting mistake, posted it again and it is gone). In my opinion, (if this is the case) we are doing a great disservice to all posters, in particular "the newbies" if a poster can not discuss this disease in full detail and not withhold what they are finding without being censored, we as a community are doomed. All the best, Mike

Mike,

A post is set on invisible if it is inappropriate in content or is in duplication. This is one of the many roles of moderators on this site. We assist in assuring that the Board Rules are not violated. The Board Rules are few and very clear. We do not indulge in random censorship. We do value accuracy.

[Sailing Girl]

I also want to thank Mike M. I'm a novice at using the test strips compared to him, but I've already explained so, so many CC incidents with them -- involving several supposedly perfectly safe products. Like dilettantesteph, I was only using a tiny amount (a few teaspoons or tablespoons of spice or flavoring at most in a huge dish), but it didn't matter -- I would get glutened.

I wasn't reacting to some other food (I don't have other intolerances, and yes, I'm certain of what I react to and what doesn't bother me after having done this for a few years). I was reacting to a few molecules of gluten. We get enough of gluten-eaters questioning our reactions -- why are we doubting each other?

I'm horrified if it's true that someone has taken it upon themselves to delete Mike's posts. He's reporting what he has learned through scientific testing of food samples. The company that developed these test strips is reputable (I've checked them out), and has developed a variety of ELISA tests for foods -- not just gluten.

Gluten is everywhere in the food chain -- that shouldn't surprise anyone who's ever walked through a supermarket. Just because you've personally never reacted doesn't mean the gluten isn't in there -- maybe you're not that sensitive. I *am* that sensitive and I've used the test strips myself -- I absolutely believe what Mike says about gluten in wine and spices and so, so many other products that are supposedly "gluten-free" or have been blessed by some celiac association. Why are some of you so afraid of this information?

As of today, I've gone nine days without a CC reaction -- which isn't a record but is pretty unusual. It's ridiculous that I was getting CC'd as often as I was, since I cook everything myself using fresh products and "safe" ingredients. I react to gluten at least at 5ppm (as verified by the test strips), and I suspect I react at 1ppm. I always suspected that, but the test strips have proven it for me. Thank you, Mike M.

Steph, I'm glad you brought up contamination in McCormick spices. So far, I haven't had a problem with that brand, but I know it's on a a jar-by-jar basis. I'm planning to get a spice grinder and start making my own -- be cheaper that way, too .

[Mike M]

Mike,

A post is set on invisible if it is inappropriate in content or is in duplication. This is one of the many roles of moderators on this site. We assist in assuring that the Board Rules are not violated. The Board Rules are few and very clear. We do not indulge in random censorship. We do value accuracy.

Oh, well I did post it twice. Is this the reason? Mike

[Jestgar]

Oh, well I did post it twice. Is this the reason? Mike

Mike, I just looked. You have no invisible posts. Maybe a server glitch somewhere and your posts didn't make it to the board?

[Mike M]

Mike, I just looked. You have no invisible posts. Maybe a server glitch somewhere and your posts didn't make it to the board?

Could have been, my web service was a bit glitchy yesterday, I'll post it again and in my opinion, it (the post) does need to be kept in the context of what was being discussed and also it needs to be kept in mind that is was posted on the sensitive area of this site. If someone out there is not getting better on the gluten free diet (and has ruled out other possible health issues) perhaps they could consider trying the approach that I and some others have tried (eliminating virtually all possible cross contamination chances) by making ALL of your own condiments. spices from whole and avoiding all processed foods. As always, all the best, Mike M

Here is the post from yesterday:

Wanted to second the "nailed it". I still use them on occasion. Am I glad I did use them and that they are available? Oh yes. I want to sum up real quick what I have learned from these strips (in no particular order). I have learned that just because the label on the package says "gluten free" means nothing to me. It more than likely has some amount of gluten in it (I had no idea this could be). I have learned that foods that don't even say "gluten free" on the label often times are indeed "cleaner" with regards to gluten content than their counterparts, (I am talking about gluten free ingredient foods here). I have learned that not all wines are safe just because the consensus of the celiac community say they are. Same goes for vinegar, I have found that unless they are naturally fermented (the wine/vinegar) I can not trust it, I react to store bought brands of vinegar. Name brand spices in general are often times CC'd including the ones that are organic. I grind all of my own from whole without any trouble and this includes black pepper and salt. I make my own ketchup, mustard, barbecue sauce. steak sauce, salad dressings like Italian ect ect again, because of the vinegar issue. I do use boxed tomatoes for the ketchup/barbecue sauce and add naturally fermented vinegar so it will keep. I also can it. I do grind my own whole mustard seeds and use whole tumeric (if you want to know the trick to making good mustard, let me know, there is a trick to it). I could not find a ground mustard seed that would pass the gluten test. Did you know that iodized salt also has corn in it (nothing to do with gluten, just one of the discoveries that I made along the way) It is put in there to preserve the iodine. I know I got one big education from using these test strips and just as sure as I am typing this message, they allowed me to heal in a very timely manner. Mike

[MaryJones2]

Mike, your posts weren't deleted. They're on the previous page:

https://www.celiac.com/gluten-free/index.ph...st&p=520466

https://www.celiac.com/gluten-free/index.ph...st&p=520474

[weluvgators]

I ramble. Anyone know of reliable gluten free beans?

I have not yet figured this out, so I try to thoroughly wash the dry beans before cooking. Our local health food store owner has not yet found a bean source that is not on shared equipment. Getting a beans routine down is one of my latest endeavors, but I still have a ways to go. So, if you figure out a reliable source of truly gluten free beans, please let me know.

Thanks, Keila

[weluvgators]

Are any of you using packaged non-dairy "milk"? I am getting ready to try the Pacific brand, but was curious what others are using. My hemp milk test results were absolutely terrible.

Keila

[Mtndog]

Bev,

What other products from Amy's do you eat? Are the ones that say gluten-free made in the dedicated facility? I also see no gluten ingredients and wonder what the difference is between the two. I recently discovered sunbutter and love it!

Janet

last I checked only the rice crust pizzas and the gluten-free mac and cheese were made in a dedicated facility. I have not tried the mac and cheese but LOVE throwing a bunch of stuff (veggies, meat) on them! One of my favorites!

I am glad that you have been able to resolve your issues so simply.

Please understand that we are all on different journeys!

Here is a sampling of a story that even I am struggling to comprehend . . . and if you just think I am crazy, well, get in line. ;-)

They each had a different meat, but had the same eggs. I racked my brain wondering what they had eaten, but nothing was out of normal. THEN I realized that they had not washed their hands before eating! Their younger brother who had NOT used THEIR computer showed no sign of reaction.

Everyone is definitely on a different path! But what you just described sounds like an ALLERGIC reaction- not a gluten one- the hives, the headaches, the red skin. This might explain WHY despite the guests following your protocol your girls got sick. They may be allergic to something and you should consider getting them tested. Eggs are one of the top 8 allergens and I would HATE to see you blame it on gluten only for one of them to later have a serious allergic reaction.

I wasn't reacting to some other food (I don't have other intolerances, and yes, I'm certain of what I react to and what doesn't bother me after having done this for a few years). I was reacting to a few molecules of gluten. We get enough of gluten-eaters questioning our reactions -- why are we doubting each other?.

I'm wondering if you have tried the elimination diet to be sure?

[Mtndog]

Everyone is definitely on a different path! But what you just described sounds like an ALLERGIC reaction- not a gluten one- the hives, the headaches, the red skin. This might explain WHY despite the guests following your protocol your girls got sick. They may be allergic to something and you should consider getting them tested. Eggs are one of the top 8 allergens and I would HATE to see you blame it on gluten only for one of them to later have a serious allergic reaction.

Keila- I had to revisit this because it really concerns me that you think the *ONLY* possibility is CC from the computer. It's absolutely possible but is this how your daughters normally react to gluten? Did your daughters not was their hands before eating?

I would not feed my children eggs again until this is ruled out as an allergy