I was using a coconut oil product which went over well but it was 100% saturated fat so I quit - needed to lower cholesterol. I'd be interested in taking a look at the flour. Can you give me the brand name? Thanks so much.
Would anyone have an interest in starting/joining a discussion about following a gluten free diet. What has worked or not worked and how it has helped or not helped. We can learn from one another.
sketurn,
The main difference is you have to really learn to read food labels. MSG is one of the gluten monsters. I know it is a salt, but guess what it is made from! Glutens. Elmer's glue all is also from glutens.
Don't worry, just eat more vegetables and fruits and avoid most grains. Those are found in breads, cereals, breadings, even the flour McDonald's uses to make their french fries crispy. ANY wheat, rye, barley, spelt, teff, shellfish, sometimes pork, can cause the reactions. Adhesives from those electrodes used in an ECG can trigger the skin reactions.
BUT..the magazine Living Without is a good resource. Pamela's flour mix is good unless you have a nut allergy, then look further. I often use Bob's Red Mill Gluten Free products. I found my mouth salivating when entering a grocery store with an in-store bakery. Took almost 2 solid years for that to stop, guess I was a Pavlov's dog in that manner.
Some frozen vegetables will advertise they are gluten free and OF COURSE they are unless they are grown along side a wheat field and get the drainage water from irrigation.
Some perfumes will set off sneezing and some grains, like alfalfa can trigger allergic reactions that I suspect are part of the host of intolerance.
I hope this helps. It sums up a lie of reading labels, having kids who help me by reading labels.
Sure it sounds miserable, but it takes getting used to.
Would anyone have an interest in starting/joining a discussion about following a gluten free diet. What has worked or not worked and how it has helped or not helped. We can learn from one another.
It took a long time to figure out as other things were going on at the same time. When I was 17, I had a severe stomachache in school and had to go home. SInce it happened about an hour after breakfast, we all thought it was breakfast that had bothered me, and I had eaten egg and a waffle. When I was a college freshman I ate some pancakes that were yellow with egg, and the attack that I got about an hour later was so severe that I ended up in the campus hospital. (dizzy, nothing was staying down or staying in me, etc).
That was the worst attack I've had, but I have had multiple run-ins with eggy items (but eggy items always have gluten).
Ten years after that, I ate something with soy sauce and got sick (diarrhea only). I now know that soy sauce has gluten.
Fast forward 20 yrs later and oats started bothering me, I was diagnosed with endometriosis which is a female disease and told to go gluten free (without celiac testing). After 2 years gluten free and for the first time, finding out about celiac, I got curious and wanted to be tested, not knowing I had to be on gluten for an accurate result. However, I did test positive 2 out 3 areas (genes and bloodline).
My dr had told me he had noticed the Irish tend to get it more, and I do have Irish in me. Two years after that test, I decided I wanted to know for sure, and with dr approval went back on gluten, but could only stand it 3 days. So while I will never know for sure if I'm celiac, I have so many things against me including all those reactions as a young adult to what I now know was gluten. I've eaten lots of eggy items since gluten free, and have had no reactions.
It took a long time to figure out as other things were going on at the same time. When I was 17, I had a severe stomachache in school and had to go home. SInce it happened about an hour after breakfast, we all thought it was breakfast that had bothered me, and I had eaten egg and a waffle. When I was a college freshman I ate some pancakes that were yellow with egg, and the attack that I got about an hour later was so severe that I ended up in the campus hospital. (dizzy, nothing was staying down or staying in me, etc).
That was the worst attack I've had, but I have had multiple run-ins with eggy items (but eggy items always have gluten).
Ten years after that, I ate something with soy sauce and got sick (diarrhea only). I now know that soy sauce has gluten.
Fast forward 20 yrs later and oats started bothering me, I was diagnosed with endometriosis which is a female disease and told to go gluten free (without celiac testing). After 2 years gluten free and for the first time, finding out about celiac, I got curious and wanted to be tested, not knowing I had to be on gluten for an accurate result. However, I did test positive 2 out 3 areas (genes and bloodline).
My dr had told me he had noticed the Irish tend to get it more, and I do have Irish in me. Two years after that test, I decided I wanted to know for sure, and with dr approval went back on gluten, but could only stand it 3 days. So while I will never know for sure if I'm celiac, I have so many things against me including all those reactions as a young adult to what I now know was gluten. I've eaten lots of eggy items since gluten free, and have had no reactions.
It seems like doing "gluten-free" is something Docs tell people to do when they don't know what else to do. Whether it's celiac or not, sounds like you definitely are gluten intolerant, so at least you know how to help yourself! (it sounds like your test did indicate celiac though). Hope things continue to go well!
Would anyone have an interest in starting/joining a discussion about following a gluten free diet. What has worked or not worked and how it has helped or not helped. We can learn from one another.
I have been on gluten free diet for 6+ years due to lots of stomach issues, as well as infections. Dr. started me out on sugar and yeast free diet and I gradually got around to a gluten free diet. When eating anything with wheat in it, I get bloated, nausea and diarrhea. Even though I have not been tested for celiac or other issues, the gluten free seems to work for me. A chiropractor had suggested that I try it many years ago, but I thought it would be so difficult and didn't really believe it would help, but it sure has. My husband likes the recipes and gluten free foods so that makes it easier to follow the diet even thought he does eat a regular diet mostly. It is also fun to experiment with gluten free recipes.
I have been on gluten free diet for 6+ years due to lots of stomach issues, as well as infections. Dr. started me out on sugar and yeast free diet and I gradually got around to a gluten free diet. When eating anything with wheat in it, I get bloated, nausea and diarrhea. Even though I have not been tested for celiac or other issues, the gluten free seems to work for me. A chiropractor had suggested that I try it many years ago, but I thought it would be so difficult and didn't really believe it would help, but it sure has. My husband likes the recipes and gluten free foods so that makes it easier to follow the diet even thought he does eat a regular diet mostly. It is also fun to experiment with gluten free recipes.
Interesting, baz. It certainly is a story I've heard a lot. I go on any patient forum I can find, because I've found them to be such a valuable resource! I'm new here, but so far liking this one because it seems very active - there are current conversations! Seems like it really isn't even necessary to have a lot of testing if you've already found something that helps you - go with what works!
I do find it interesting that there seem to be a lot more people who have problems with wheat/wheat products particularly, people who do not have celiac disease. One theory I've read, that seems plausible is that there is that wheat is processed using a chemical called glyphosate, the same chemical found in Round Up and pesticides, i.e. a poison. I'll try to remember to post it when I'm allowed to post links, but there is really good paper (and others) published in 2013 that discussed the great rise in celiac like symptoms and the use of glyphosate. Of course, I just read another paper criticizing the conclusions of these authors, but it seemed to be more about some other conclusions they were making, not with the GI issues. Anyway, the overall theory is that it is the glyphosate that people are reacting to, not the gluten (which is a particular protein in wheat and other substances). That is why many people test negative for celiac disease but still seem to have problems with wheat etc. On a practical level, it doesn't matter; if eating certain substances makes people sick, and not eating them helps, the mechanism doesn't matter - do what helps.
On a larger population level scale, it does matter. It's hard to argue with the clear data that the rise in patients with gluten/wheat intolerance and use of Round Up are correlated. On the other hand, correlation doesn't imply causation, however there are a lot of theoretical reasons why glyphosate could be toxic, yet food industries in the US and other countries continue to use it more and more. Interestingly, it is also being used to "cure" (I'm not sure what that means, but anyway) sugar cane, so used in the processing of sugar. And, while it is anecdotal, I read about a lot of people having problems with sugar and wheat. And sugar doesn't contain gluten.
Bottom line is I think the best we can do is 'experiment' on ourselves, and do what seems to help. A second theme I've noticed is that sometimes you have to do this despite being told it won't help, or you don't have the right disease, or a test doesn't show you having the right problem. I have been reading another thread here, where a person had a negative test for fructose intolerance, but found eliminating this from her diet made her feel dramatically better.
Anyway, this was a long diatribe, but I find this diet dilemma very interesting, and like to hear people's stories. I have tried gluten free, but probably not long enough to be able to tell if it made a difference. I'm basically tired (maybe lazy) and not very disciplined; but it's beginning to look like diet is about the only thing left that I can manipulate to try to feel better. However, I don't have diarrhea, and it seems that is a symptom that most with gluten intolerance have. Thanks for sharing your experience (and to all the others that have also)
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Let's Do Organic 100%Organic Coconut Flour Extra-Fine Flour. I go tit at the grocery store, not at a health food/natural foods store.
It's different from lots of other flours, but it is good.
Thanks!
Yes i would like to learn more about gluten-free lifestyle
sketurn,
The main difference is you have to really learn to read food labels. MSG is one of the gluten monsters. I know it is a salt, but guess what it is made from! Glutens. Elmer's glue all is also from glutens.
Don't worry, just eat more vegetables and fruits and avoid most grains. Those are found in breads, cereals, breadings, even the flour McDonald's uses to make their french fries crispy. ANY wheat, rye, barley, spelt, teff, shellfish, sometimes pork, can cause the reactions. Adhesives from those electrodes used in an ECG can trigger the skin reactions.
BUT..the magazine Living Without is a good resource. Pamela's flour mix is good unless you have a nut allergy, then look further. I often use Bob's Red Mill Gluten Free products. I found my mouth salivating when entering a grocery store with an in-store bakery. Took almost 2 solid years for that to stop, guess I was a Pavlov's dog in that manner.
Some frozen vegetables will advertise they are gluten free and OF COURSE they are unless they are grown along side a wheat field and get the drainage water from irrigation.
Some perfumes will set off sneezing and some grains, like alfalfa can trigger allergic reactions that I suspect are part of the host of intolerance.
I hope this helps. It sums up a lie of reading labels, having kids who help me by reading labels.
Sure it sounds miserable, but it takes getting used to.
Yes!
Hi Lyndarm, what were your early Celiac Symptoms?
It took a long time to figure out as other things were going on at the same time. When I was 17, I had a severe stomachache in school and had to go home. SInce it happened about an hour after breakfast, we all thought it was breakfast that had bothered me, and I had eaten egg and a waffle. When I was a college freshman I ate some pancakes that were yellow with egg, and the attack that I got about an hour later was so severe that I ended up in the campus hospital. (dizzy, nothing was staying down or staying in me, etc).
That was the worst attack I've had, but I have had multiple run-ins with eggy items (but eggy items always have gluten).
Ten years after that, I ate something with soy sauce and got sick (diarrhea only). I now know that soy sauce has gluten.
Fast forward 20 yrs later and oats started bothering me, I was diagnosed with endometriosis which is a female disease and told to go gluten free (without celiac testing). After 2 years gluten free and for the first time, finding out about celiac, I got curious and wanted to be tested, not knowing I had to be on gluten for an accurate result. However, I did test positive 2 out 3 areas (genes and bloodline).
My dr had told me he had noticed the Irish tend to get it more, and I do have Irish in me. Two years after that test, I decided I wanted to know for sure, and with dr approval went back on gluten, but could only stand it 3 days. So while I will never know for sure if I'm celiac, I have so many things against me including all those reactions as a young adult to what I now know was gluten. I've eaten lots of eggy items since gluten free, and have had no reactions.
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2 ReactionsIt seems like doing "gluten-free" is something Docs tell people to do when they don't know what else to do. Whether it's celiac or not, sounds like you definitely are gluten intolerant, so at least you know how to help yourself! (it sounds like your test did indicate celiac though). Hope things continue to go well!
Hi guthealth @guthealth,
I have been on gluten free diet for 6+ years due to lots of stomach issues, as well as infections. Dr. started me out on sugar and yeast free diet and I gradually got around to a gluten free diet. When eating anything with wheat in it, I get bloated, nausea and diarrhea. Even though I have not been tested for celiac or other issues, the gluten free seems to work for me. A chiropractor had suggested that I try it many years ago, but I thought it would be so difficult and didn't really believe it would help, but it sure has. My husband likes the recipes and gluten free foods so that makes it easier to follow the diet even thought he does eat a regular diet mostly. It is also fun to experiment with gluten free recipes.
-
Like -
Helpful -
Hug
1 ReactionInteresting, baz. It certainly is a story I've heard a lot. I go on any patient forum I can find, because I've found them to be such a valuable resource! I'm new here, but so far liking this one because it seems very active - there are current conversations! Seems like it really isn't even necessary to have a lot of testing if you've already found something that helps you - go with what works!
I do find it interesting that there seem to be a lot more people who have problems with wheat/wheat products particularly, people who do not have celiac disease. One theory I've read, that seems plausible is that there is that wheat is processed using a chemical called glyphosate, the same chemical found in Round Up and pesticides, i.e. a poison. I'll try to remember to post it when I'm allowed to post links, but there is really good paper (and others) published in 2013 that discussed the great rise in celiac like symptoms and the use of glyphosate. Of course, I just read another paper criticizing the conclusions of these authors, but it seemed to be more about some other conclusions they were making, not with the GI issues. Anyway, the overall theory is that it is the glyphosate that people are reacting to, not the gluten (which is a particular protein in wheat and other substances). That is why many people test negative for celiac disease but still seem to have problems with wheat etc. On a practical level, it doesn't matter; if eating certain substances makes people sick, and not eating them helps, the mechanism doesn't matter - do what helps.
On a larger population level scale, it does matter. It's hard to argue with the clear data that the rise in patients with gluten/wheat intolerance and use of Round Up are correlated. On the other hand, correlation doesn't imply causation, however there are a lot of theoretical reasons why glyphosate could be toxic, yet food industries in the US and other countries continue to use it more and more. Interestingly, it is also being used to "cure" (I'm not sure what that means, but anyway) sugar cane, so used in the processing of sugar. And, while it is anecdotal, I read about a lot of people having problems with sugar and wheat. And sugar doesn't contain gluten.
Bottom line is I think the best we can do is 'experiment' on ourselves, and do what seems to help. A second theme I've noticed is that sometimes you have to do this despite being told it won't help, or you don't have the right disease, or a test doesn't show you having the right problem. I have been reading another thread here, where a person had a negative test for fructose intolerance, but found eliminating this from her diet made her feel dramatically better.
Anyway, this was a long diatribe, but I find this diet dilemma very interesting, and like to hear people's stories. I have tried gluten free, but probably not long enough to be able to tell if it made a difference. I'm basically tired (maybe lazy) and not very disciplined; but it's beginning to look like diet is about the only thing left that I can manipulate to try to feel better. However, I don't have diarrhea, and it seems that is a symptom that most with gluten intolerance have. Thanks for sharing your experience (and to all the others that have also)