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Rachel--24

Omg...i Might Be On To Something

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Woah... I just found this on another thread. It was info about sub-clinical gluten intolerance posted by Mango.

This is only a portion of what was posted:

This subject is confusing and there is much misinformation about gluten and gliadin. To clarify, gliadin, the molecule that causes the problem, is present in some, but not all gluten containing foods. People with this problem must avoid glutens from the grains of wheat, rye, barley, oats, kamut, spelt, quinoa, amaranth, teff and couscous. Some of these grains, like oats have lower concentrations of both gluten and gliadin than wheat does, but any food containing this specific gliadin, even from a lower concentration food source, is not tolerated by people with sub-clinical gluten intolerance.

Hmmm..maybe I really was glutened on Thursday. <_<

Maybe thats what the doctor was seeing in "real time". An actual glutening. I had eaten the quinoa about 5 hours before my appt. If I really was glutened after all could it have made my digestion worse for the peanut butter I had later....causing even more trouble than fats already cause me??

Heres a link to that thread in case anyones interested.

http://www.glutenfreeforum.com/index.php?s...c=20676&hl=

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Woah... I just found this on another thread. It was info about sub-clinical gluten intolerance posted by Mango.

This is only a portion of what was posted:

Hmmm..maybe I really was glutened on Thursday. <_<

Maybe thats what the doctor was seeing in "real time". An actual glutening. I had eaten the quinoa about 5 hours before my appt. If I really was glutened after all could it have made my digestion worse for the peanut butter I had later....causing even more trouble than fats already cause me??

Heres a link to that thread in case anyones interested.

http://www.glutenfreeforum.com/index.php?s...c=20676&hl=

Wow! Your doctor might have actually seen a glutening from the inside. I wonder if GI's have ever thought of doing that? They could be going about studying this the wrong way.... I wouldn't be surprised if you were glutened by the quinoa--all grains make me feel that way.

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Yay! I love it when people go off dairy for good!

www.godairyfree.com is pretty good

www.notmilk.com is another one. It looks a bit wacky at first glance but there are some good articles in there.

Anyway, I gotta go pack up my apartment. Happy Saturday :)

Thanks so much Mango for these links, I will definitely check them out.

It's packing time for you already? You are leaving us so soon :(:(:(

Julie and everyone else that needs this :lol:

Phobia of dirt or filth- Rhypophobia or Rupophobia.

This is great Celia! Or we could coin the phrase ourselves, Britney-barefoot-itis-in-a-gas-station-bathroomphobia??

Woah... I just found this on another thread. It was info about sub-clinical gluten intolerance posted by Mango.

This is only a portion of what was posted:

Hmmm..maybe I really was glutened on Thursday. <_<

Maybe thats what the doctor was seeing in "real time". An actual glutening. I had eaten the quinoa about 5 hours before my appt. If I really was glutened after all could it have made my digestion worse for the peanut butter I had later....causing even more trouble than fats already cause me??

Heres a link to that thread in case anyones interested.

http://www.glutenfreeforum.com/index.php?s...c=20676&hl=

Rachel, this is all very interesting. In all of my allergy tests and treatments I was having problems with both gluten and gliadin.

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My symptoms are basically poor digestion, cant gain weight, swelling, fluid retention, headaches, fatigue, brainfog, dont feel good when I eat, cant tolerate alot of foods....this is when I'm taking my meds, vitamins and supplements but eating no corn. I have problems with oils...I'm thinking they have corn in them.

If I actually EAT something with corn in it....I feel "glutened". Maybe I've actually never been glutened...maybe I've only been "corned". :blink:

I get a worsening of all my symptoms, more reactive to other foods, muscle and joint pains, burning sensations, blurred vision, numbness and tingling, nightsweats and bad dreams.. Thats why I avoid processed foods. The reactions suck...plus I lose weight.

I never get these type of reactions from meat, meat actually makes me feel good but sometimes its hard to digest so I cant eat tons of it.

Molly,

Theres a brand called Featherweight or something like that....suppossedely its the only brand thats corn-free. Ursula posted the recipe...I think I've seen it in one of my baking books.

I think I may have seen you at the game! Were you by any chance on crutches? If you were then I walked right past you. If not then it was another "orange" girl who looked alot like you. :)

JnkMnky,

I was checking out that site last night. You can type in your allergen and get a whole list of stuff. I saw marshmallows on there!! I was pretty excited about that. I've been kinda p'd off about not being able to tolerate one freakin marshmallow all this time. I was so confused as to why I couldnt have any gluten-free foods. Ummm...maybe its because I needed to be corn-free instead. :huh:

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Woah... I just found this on another thread. It was info about sub-clinical gluten intolerance posted by Mango.

This is only a portion of what was posted:

Hmmm..maybe I really was glutened on Thursday. <_<

Maybe thats what the doctor was seeing in "real time". An actual glutening. I had eaten the quinoa about 5 hours before my appt. If I really was glutened after all could it have made my digestion worse for the peanut butter I had later....causing even more trouble than fats already cause me??

Heres a link to that thread in case anyones interested.

http://www.glutenfreeforum.com/index.php?s...c=20676&hl=

Oh sorry Rachel I even mentioned your quinoa reaction on that thread. I totally meant to post it here too (that would have made more sense) but kind of lost track of things. :huh:

Okay I'm really gonna go pack now LOL

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Wow! Your doctor might have actually seen a glutening from the inside. I wonder if GI's have ever thought of doing that? They could be going about studying this the wrong way.... I wouldn't be surprised if you were glutened by the quinoa--all grains make me feel that way.

That would be so cool if thats what was going on on that ultrasound screen. She had never seen anything like that. I bet they've never studied reactions like that....having someone eat gluten and then doing ultrasounds and watching the intestines. I get fascintated by this stuff...unfortunately we'll never really know the answer.

Funny thing is...I get the same reaction with amaranth that I do with quinoa. I get bloated and a burning on my face...then later cramps and loose stools. I used to eat the amaranth snaps but had to stop cuz I was getting worse. I also used amaranth bread crumbs on my chicken once and got really really sick. Could this be why I'm not healing too good? All these months of alternative grains....even if its only say, a few times a month? I dont get this reaction from rice though.

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$1200?? Is that installed, or self install? Cuase the last quote I got on one was MUCH higher.

That's self install. If you are handy at things like that he is available to help over the phone...you just have to let him know when you plan to install so he makes sure he's there. He does have an 800 number. Check out his site.

www.cleanairpurewater.com or

www.cleanairpurewater.com/water_equipment.html

Rachel and Floridian,

You need to check out the site as well. I can't recommend Jim and his products enough. I've been really pleased and would have planned on the whole system if we didn't rent. He will talk to you about your water and what you want from a system so he can better build what you are looking for. He has his system set up so he can take it out to show people. His website has lots of info on it.

Julie and everyone else that needs this :lol:

Phobia of dirt or filth- Rhypophobia or Rupophobia.

Celia,

From my hubby...There is a wikepedia...now there is a celiapedia. :lol:

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Oh sorry Rachel I even mentioned your quinoa reaction on that thread. I totally meant to post it here too (that would have made more sense) but kind of lost track of things. :huh:

Okay I'm really gonna go pack now LOL

Its ok Mango....I went back and saw that you mentioned my reaction to the quinoa. It makes sense if thats what happened...thanks for posting that....I was destined to find it. :D

Get packing....what day are you leaving? I'm so jealous....you get to see koalas!!

I was talking to this girl on another message board and she lived in Australia...I told her to hug a koala for me. I LOVE them...they look so cute and fuzzy. She told me they are mean and will scratch your eyes out. :blink: She said they can be viscious....totally ruined all my thoughts about koalas being soft and cuddly. She said they're not just hanging out in the trees either...she never sees them...they're far away from people. Man....I totally had a different vision of Australia before talking to her. :rolleyes:

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That would be so cool if thats what was going on on that ultrasound screen. She had never seen anything like that. I bet they've never studied reactions like that....having someone eat gluten and then doing ultrasounds and watching the intestines. I get fascintated by this stuff...unfortunately we'll never really know the answer.

Funny thing is...I get the same reaction with amaranth that I do with quinoa. I get bloated and a burning on my face...then later cramps and loose stools. I used to eat the amaranth snaps but had to stop cuz I was getting worse. I also used amaranth bread crumbs on my chicken once and got really really sick. Could this be why I'm not healing too good? All these months of alternative grains....even if its only say, a few times a month? I dont get this reaction from rice though.

Rachel,

It sound like Mango's post will be really helpful to you. I tested low on the allergy scale to gliadin and moderate to gluten so I wonder how I will do with these. I just bought some alternate grain flours just in case T has a more permanent reaction with rice. Of course it could be anything. Her HSP is supposed to be gone until the first cold of the season, otherwise we'd blame that.

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Wow...I'm still pretty surprised by the info. about quinoa even though my own doctor told me to avoid it. I guess I thought he was the *only* one saying it so maybe it wasnt true.

I'm gonna have to ask him about it again...he told me in the past many of his gluten intolerant patients react to it the same as the other gluten/gliadin grains. I didnt know that quinoa had small amounts of gliadin...I thought it was an issue of the immune system mistaking it for gluten like what happens sometimes with casein. This is news to me and could definately explain why I'm never getting better. I think I have alot of problems anyway but eating these gliadin containing grains cannot be helping. <_<

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YAY!!! And then I go on to live happily ever after.

Until the very end when you see that all of a sudden I get bloated again. and the spooky music is playing and then you just know there will be a part II.

Too funny.

To the twins, I am so glad that you have found each other. :)

Wouldn't it be ironic if so many of the things we reach for, like alternative grains and supplements are in fact keeping us sick? :angry:

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Maybe it was destiny that I didnt go to the store and had to eat that quinoa or starve...on the very day I was having the ultrasound. I believe that stuff happens for a reason. If it werent for that craziness that showed up on the ultrasound and the problems I'm having since I dont think I would've given too much thought to the quinoa. Probabaly would have blamed the Edward and Sons crackers even though the bloating and symptoms didnt show up until I ate the quinoa.

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Wouldn't it be ironic if so many of the things we reach for, like alternative grains and supplements are in fact keeping us sick? :angry:

It's beginning to look like this is the case rinne.

Maybe it was destiny that I didnt go to the store and had to eat that quinoa or starve...on the very day I was having the ultrasound. I believe that stuff happens for a reason. If it werent for that craziness that showed up on the ultrasound and the problems I'm having since I dont think I would've given too much thought to the quinoa. Probabaly would have blamed the Edward and Sons crackers even though the bloating and symptoms didnt show up until I ate the quinoa.

I like to think this way too, that everything does happen for a reason and we are given signs and signals to lead us in the right direction. This is a big revelation for you because now you can stay away from things with gliadin as well and maybe that will allow for more healing to take place.

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It's beginning to look like this is the case rinne.

Julie, I completely agree. What does that say about the world we are living in?

I wonder what kind of choices we may be forced to make if we want to live, if we want to be healthy. Years ago my sweetie and I had a small organic farm and it was pure joy to eat from the gardens in the summer and then enjoy the potatoes and carrots and beets all winter long. The reality though is that I am not an introvert and the long days alone on the farm depressed me. I miss the food though and am thinking about gardens a lot. The best times were our slumber parties when friends would come and camp for a few days.

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Hmmm...the more I read this the more confused I get. He's saying that oats and the alternative grains have lower concentrations of gluten and gliadin than the others but my belief was that oats did not contain gliadin or gluten at all. I thought it was just an issue of cc with oats. Also we know that some people react to pure oats because the immune system still reacts the same as if it were a gluten grain. What is the deal....do oats and the alternative grains actually contain gliadin molecule or not?? Thats what I want to know. I think its inportant that we all know this for sure. Heck, none of us goes out buying rye crackers or eating wheat bread but what if we're still harming ourselves...just in smaller doses...with stuff we believe is "safe"??? If there really is small amounts of gliadin...I'm really alarmed. :o

This subject is confusing and there is much misinformation about gluten and gliadin. To clarify, gliadin, the molecule that causes the problem, is present in some, but not all gluten containing foods. People with this problem must avoid glutens from the grains of wheat, rye, barley, oats, kamut, spelt, quinoa, amaranth, teff and couscous. Some of these grains, like oats have lower concentrations of both gluten and gliadin than wheat does, but any food containing this specific gliadin, even from a lower concentration food source, is not tolerated by people with sub-clinical gluten intolerance.

I thought the protein in oats was called avenin. :unsure:

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People with this problem must avoid glutens from the grains of wheat, rye, barley, oats, kamut, spelt, quinoa, amaranth, teff and couscous.

I find listing couscous confusing as I had understood it was made from wheat but maybe there is something I don't know about.

It is important information because gluten free products contain quinoa, amaranth and teff not to mention just eating them. I tried some quinoa a while back and it was when I was more inflamed and it felt like I had broken glass moving through my system. :( I also felt extremely agitated which was not surprising given the pain but the quality of agitation reminded me of a gluten reaction.

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Like sands through the hourglass these are the days of our lives here on the OMG thread....

Our story began long long ago with corn (oh how I long for the simple days of corn), and then msg and packaged/processed foods, somewhere in the middle there was a dramatic Bumble Bar intervention, a tropical storm, followed by cysts and ovary pain, and the shocking twist of alien babies, carbon water filters and now gluten's evil twin gliadin.

:lol::lol::lol:

Anyone can add what I left out.

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Oh Holy Cow!!! I just spent 40 minutes trying to hurry up and catch up...I have to leave in 10 minutes, lol. I'm answering stuff that was so far back no one probably remembers anymore, lol. :lol:

And the change in shape is inflamation? What's causing the inflamation? Or I guess that is what the mystery is and what they are trying to figure out, no?

I’m not sure the doctor thinks there’s a change in shape…it just looks that way to me. I asked him what could cause the inflammation and he said sometimes the body just gets inflamed. Wow, glad he told me, lol. I really like this doctor (same one Rachel sees), but sometimes doctors say the darned things, lol. Anyway, I was out shopping today with my mom and saw a book on inflammation. I almost bought it and now think I should go back tomorrow for it. There are all kinds of things that can cause it…(a tiny bit I got from flipping through the book), but the book gave some tips on how to reduce the inflammation in the body.

Evie – happy anniversary and congratulations on 60 years! I’ve only known one other couple that reached 60 years! That’s quite an accomplishment.

Hum, I have a Pur water pitcher that I use...I'll bet that has carbon in it too. I have never seen Poland Springs around where I live either, but I'm going to try. I usually drink bottled water if I'm out and the Pur pitcher water if I'm home. Interesting theory

Okay, that's it, I got to leave again...Can we try to keep the new pages to 20 or fewer while I'm gone. :lol::lol: Just kidding, sort of. :blink::ph34r:

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Ok everyone....I'm taking back the quinoa, quinoa flour, teff flour, amaranth flour and quinoa corn pasta. I'll look for plain corn pasta. S the space bar baby if after the keyboard. He always pushes the space bar. :lol: After we eat, we're heading out. I have a bag of gluten free oats too but I can't take that back.

May not have a problem with these but since I am mildly allergic (about in the middle of the low range), they are going back. What I found interesting about the allergy test is I wasn't allergic to oats, barley, amaranth, quinoa...but I was just over the line of moderate for gluten and I already mentioned gliadin being midline low. I can see why some doctors like mercola say to go grain free. Hopefully T won't have a big problem with rice so we can still eat tinkyada pasta anyway. Don't know what to do about other things like bread.

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Years ago my sweetie and I had a small organic farm and it was pure joy to eat from the gardens in the summer and then enjoy the potatoes and carrots and beets all winter long.

I want an organic farm. Even just a big family garden on our own piece of property. I like quiet and the road we are on is a little too busy for my tastes.

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Hmmm...the more I read this the more confused I get. He's saying that oats and the alternative grains have lower concentrations of gluten and gliadin than the others but my belief was that oats did not contain gliadin or gluten at all. I thought it was just an issue of cc with oats. Also we know that some people react to pure oats because the immune system still reacts the same as if it were a gluten grain. What is the deal....do oats and the alternative grains actually contain gliadin molecule or not?? Thats what I want to know. I think its inportant that we all know this for sure. Heck, none of us goes out buying rye crackers or eating wheat bread but what if we're still harming ourselves...just in smaller doses...with stuff we believe is "safe"??? If there really is small amounts of gliadin...I'm really alarmed. :o

I thought the protein in oats was called avenin. :unsure:

The protein in oats is avenin, you are right on that but oats also contain gliadin according to the following info:

Gluten

A protein in cereal grains. Wheat, rye, barley, and oats contain the gliadin subfraction of gluten that is toxic to persons with Celiac Disease .

Gliadin

A glycoprotein fraction of gluten. Gliadin is present in wheat, oats, rye, and barley and, it seems, millet.

but it still is confusing....

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Hmmm...the more I read this the more confused I get. He's saying that oats and the alternative grains have lower concentrations of gluten and gliadin than the others but my belief was that oats did not contain gliadin or gluten at all. I thought it was just an issue of cc with oats. Also we know that some people react to pure oats because the immune system still reacts the same as if it were a gluten grain. What is the deal....do oats and the alternative grains actually contain gliadin molecule or not?? Thats what I want to know. I think its inportant that we all know this for sure. Heck, none of us goes out buying rye crackers or eating wheat bread but what if we're still harming ourselves...just in smaller doses...with stuff we believe is "safe"??? If there really is small amounts of gliadin...I'm really alarmed. :o

I thought the protein in oats was called avenin. :unsure:

I thought so too! You're right about this--could explain why we all seem to have a difficult time healing and why I only do well on veggies and meat. It seems to me that there's a big piece of this puzzle still missing.

Too funny.

To the twins, I am so glad that you have found each other. :)

Wouldn't it be ironic if so many of the things we reach for, like alternative grains and supplements are in fact keeping us sick? :angry:

I've never been a twin before, so it's all still kind of new :D

Something sure is working to keep us sick--last year when I was diagnosed, I thought that by now (13 months later) I'd be feeling lots better. In some ways, I'm more sensitive than I ever was, and I'm eating from a much smaller selection of foods. :angry:

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Maybe it was destiny that I didnt go to the store and had to eat that quinoa or starve...on the very day I was having the ultrasound. I believe that stuff happens for a reason. If it werent for that craziness that showed up on the ultrasound and the problems I'm having since I dont think I would've given too much thought to the quinoa. Probabaly would have blamed the Edward and Sons crackers even though the bloating and symptoms didnt show up until I ate the quinoa.

I firmly believe, Rachel, that things always happen for a reason. There will come a day when you will be on the other side of this! If I didn't really believe that, I would have given up long ago. ;) I'm so grateful to have all of you to go thru this with.

All of this grain talk is so confussing, I'm just not going to eat any of it :(

That's what I do! Simpler that way. :)

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In some ways, I'm more sensitive than I ever was, and I'm eating from a much smaller selection of foods. :angry:

That's looking to be more and more the case isn't it. Maybe after avoiding all gluten and all gliadin possible and start healing more things will be better. I mean, it would make sense that once healed we would be able to eat other foods (except gluten and gliadin) and not have so much or any of a reaction.

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