Gluten free
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cwsweetpea28
Posts: 25 Member
Anyone on here have this problem
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Replies
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That's two problems in one - celiac disease, which means you have to stay away from gluten to avoid getting very very ill, and falling for hype, which means you are cutting out a staple of your diet to feel hip and cool and health conscious, and creating all kinds of difficulties for yourself, for no good reason.8
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I'm not gluten intolerant or coeliac... But eat very little gluten, and wouldn't have an issue if I was told to completely avoid it.
Why is it a problem? Do you rely on lots of packaged food items that contain gluten? Cooking from scratch helps a lot, as does getting good at label reading for packaged foods. There are many ways to enjoy a diet without gluten.1 -
I eat gluten free (among other restrictions). What's the problem?2
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I’m diagnosed Celiac since 2005. As long as I’m careful to avoid gluten (even traces of it as much as possible) I’m fine. There is a learning curve at the beginning, for sure, but honestly now it’s automatic for me. Let me know if I can help in any way.2
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I have just found out im Gluten intolerant. My head hurts, including the feeling of pressure in my head when I eat gluten. Once I stopped I felt much better. Now I have to see my doctor about it.0
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I am diagnosed (by an actual medical doctor, my Gastroenterologist to be exact, since historically in these types of posts some users question the validity of these claims) Non-Celiac Gluten Intolerance. I get very ill if I get "glutened". I prepare most of my food at home, or if I do eat out, only eat at trusted places where I know that there is little to no risk of cross contamination. If you need to avoid gluten for a medical reason, you will need to be very careful eating out. For example, Olive Garden offers Gluten Free Pasta, but I get sick every.single.time that I eat there. Same with Cracker Barrel. Even if I get something simple like eggs and bacon I still get sick. Some places just aren't that concerned/careful with cross contamination. Chain restaurants that I've had great luck - Chili's, Red Robin, and Outback Steakhouse. You want to be careful with things like french fries, because most restaurants have a shared fryer, but those that I mentioned, at least the local ones that I have been to, all have a dedicated gluten free fryer.1
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prettyash777 wrote: »I have just found out im Gluten intolerant. My head hurts, including the feeling of pressure in my head when I eat gluten. Once I stopped I felt much better. Now I have to see my doctor about it.
Just fyi: if you want to be tested for celiac disease you have to continue eating gluten until you are tested by your doctor or the test doesn't work. It will return a false negative if you have already stopped eating gluten. This also affects a diagnosis for Non Celiac Gluten Sensitivity and wheat allergies as celiac can't be reliably ruled out.
Please don't cut out gluten from your diet without consulting your doctor first.
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Another couple of chain restaurants that do well with gluten free and cross contamination issues are Longhorn and Zinburger. Zinburger offers a dedicated fryer, so their (delicious) fries are safe.
@prettyash777 Please make sure that if you are going to ask your doctor for the blood test and/or biopsy that you continue to eat gluten up until the tests so that the results are accurate.0 -
@smolmaus we posted at the same time!0
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Why do you need to continue to eat gluten, so the tests work? Just curious, I went GF three years ago to support my wife, who was advised to go GF/Dairy free for chronic pain, which helped her greatly.
The ironic thing is if we go out and things get cross contaminated -- happened in Mexico two years ago - they told us they were corn tortillas, turned out they were flour that was deep fried, I'm miserable for days and have a "celiac" rash for a long while before it goes away.
I've been told by a few celiacs I'm likely celiac, just didn't know it. I'm self-employed and to get all this testing, etc can cost you thousands of dollars. Why continue to eat gluten and why do I need it then? I understand if I'm doing testing it will not be accurate but why continue to eat it if I know it's going to make me sick for days? Seems counterintuitive. I actually don't mind being GF. It's actually fairly easy to be honest. Dairy free? That's the painful part and very, very hard to go out avoiding the dairy (my wife's primary allergy).
Not trying to be a smartass, just wondering what the benefits would be. I know I get sick as hell eating gluten and I'm careful to avoid it. Why get diagnosed then? I know that I had other slight symptoms before that I never put together. I suppose the benefit would be knowing for sure but I'm also not sure I'd want to put myself through that.
We go out to eat very little and if we do, and I'm not 100% sure that it's GF, I ask. If I'm still a little weary, I take a gluten digestive enzyme before eating (like I'm worried about Soy Sauce, something like that -- I would never try bread or similar).
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MikePfirrman wrote: »Why do you need to continue to eat gluten, so the tests work? Just curious, I went GF three years ago to support my wife, who was advised to go GF/Dairy free for chronic pain, which helped her greatly.
The ironic thing is if we go out and things get cross contaminated -- happened in Mexico two years ago - they told us they were corn tortillas, turned out they were flour that was deep fried, I'm miserable for days and have a "celiac" rash for a long while before it goes away.
I've been told by a few celiacs I'm likely celiac, just didn't know it. I'm self-employed and to get all this testing, etc can cost you thousands of dollars. Why continue to eat gluten and why do I need it then? I understand if I'm doing testing it will not be accurate but why continue to eat it if I know it's going to make me sick for days? Seems counterintuitive. I actually don't mind being GF. It's actually fairly easy to be honest. Dairy free? That's the painful part and very, very hard to go out avoiding the dairy (my wife's primary allergy).
Not trying to be a smartass, just wondering what the benefits would be. I know I get sick as hell eating gluten and I'm careful to avoid it. Why get diagnosed then? I know that I had other slight symptoms before that I never put together. I suppose the benefit would be knowing for sure but I'm also not sure I'd want to put myself through that.
The benefit is simply the accuracy of the test. If you are not consuming Gluten then the test will not be accurate.
That said, if you feel better not eating Gluten, I see no reason to even bother with the test. N=1 is the most important factor.3 -
MikePfirrman wrote: »Why do you need to continue to eat gluten, so the tests work? Just curious, I went GF three years ago to support my wife, who was advised to go GF/Dairy free for chronic pain, which helped her greatly.
The ironic thing is if we go out and things get cross contaminated -- happened in Mexico two years ago - they told us they were corn tortillas, turned out they were flour that was deep fried, I'm miserable for days and have a "celiac" rash for a long while before it goes away.
I've been told by a few celiacs I'm likely celiac, just didn't know it. I'm self-employed and to get all this testing, etc can cost you thousands of dollars. Why continue to eat gluten and why do I need it then? I understand if I'm doing testing it will not be accurate but why continue to eat it if I know it's going to make me sick for days? Seems counterintuitive. I actually don't mind being GF. It's actually fairly easy to be honest. Dairy free? That's the painful part and very, very hard to go out avoiding the dairy (my wife's primary allergy).
Not trying to be a smartass, just wondering what the benefits would be. I know I get sick as hell eating gluten and I'm careful to avoid it. Why get diagnosed then? I know that I had other slight symptoms before that I never put together. I suppose the benefit would be knowing for sure but I'm also not sure I'd want to put myself through that.
We go out to eat very little and if we do, and I'm not 100% sure that it's GF, I ask. If I'm still a little weary, I take a gluten digestive enzyme before eating (like I'm worried about Soy Sauce, something like that -- I would never try bread or similar).
I have Celiac disease as well. The medical dx is necessary because Celiac is an auto immune disease. Just being intolerant won't affect you the same as the disease. The disease attacks your small intestine and leads to other organ damage. Celiac disease has caused me to be anemic, vitamin B and D deficient (because the celiac region does not absorb nutrients) it caused me to have all kinds of food allergens because of leaky gut. It attacked my kidneys and my gallbladder, gave me migraines (severe inflammation)... Oh and I've developed peripheral neuropathy. I just turned forty in January- I've always been healthy with the exception of severe "allergies" and anemia. Now everything is off!
You don't need to pay for endoscopy if you don't want to but at bare minimum, go see a Gastroenterologist and ask for all THREE blood tests on Celiac, you MUST eat gluten for 2-3 weeks or your inflammatory markers will go down and you may get a false negative. I've likely had Celiac since my teens. I've been gf for three+ years now but healing is very slow. I just began keto diet and I think that helps... No carbs, grains or sugar which worsens inflammation.
It's worth a few hundred in lab and doctors fees to know if you're just sensitive or have an auto immune disease. Big difference between the two!2 -
@ Punchin - thanks for that. I'll consider that eventually. My wife's Fibro cost me a small fortune trying to figure it out for around a year. I just recovered financially from all that cost in the last few years. She's doing amazingly well now.
Ironically, following her diet just to be considerate likely benefitted me just as much. I guess I just haven't seen myself as a priority but I feel great other than if I accidentally ingest gluten (I don't have any other dietary intolerances). About the only other allergy is grass, which sucks when you live in Ohio where grass cutting is 2X a week! My digestion has never seemed better. The Dairy free/GF diet pretty much eliminates 99% of the garbage out there, for better or worse.
I'm really not one to say eliminate something without the need either. Ironically, my wife started eating tons of nuts -- I mean like a damn squirrel! She's now developed a nut allergy and we had to get an EpiPen. I think anything in excess can cause changes. There was research out of Australia on Peanuts that a certain strain of lactobacillus can help with peanuts. I wonder if her lack of dairy (she was allergic to cow dairy -- extensive blood testing and to a limited degree sheep/goat dairy) caused the nut allergy. Just conjecture on my part but I've been working to get her to eat a little sheep/goat and A2/A2 dairy as I think that might balance out the nut allergies.
It's frustrating and I see why people don't get diagnosed. My wife had a severe nut reaction. We went to the docs and they said test her for allergies. At first, my insurance was saying they would not cover it "in network" and the diagnostic company tried to charge $2500! We got it down to $400 but when someone says, test this, test that, it's not without massive costs in today's US medical system, which is broke as hell.
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MikePfirrman wrote: »Why do you need to continue to eat gluten, so the tests work? Just curious, I went GF three years ago to support my wife, who was advised to go GF/Dairy free for chronic pain, which helped her greatly.
The ironic thing is if we go out and things get cross contaminated -- happened in Mexico two years ago - they told us they were corn tortillas, turned out they were flour that was deep fried, I'm miserable for days and have a "celiac" rash for a long while before it goes away.
I've been told by a few celiacs I'm likely celiac, just didn't know it. I'm self-employed and to get all this testing, etc can cost you thousands of dollars. Why continue to eat gluten and why do I need it then? I understand if I'm doing testing it will not be accurate but why continue to eat it if I know it's going to make me sick for days? Seems counterintuitive. I actually don't mind being GF. It's actually fairly easy to be honest. Dairy free? That's the painful part and very, very hard to go out avoiding the dairy (my wife's primary allergy).
Not trying to be a smartass, just wondering what the benefits would be. I know I get sick as hell eating gluten and I'm careful to avoid it. Why get diagnosed then? I know that I had other slight symptoms before that I never put together. I suppose the benefit would be knowing for sure but I'm also not sure I'd want to put myself through that.
We go out to eat very little and if we do, and I'm not 100% sure that it's GF, I ask. If I'm still a little weary, I take a gluten digestive enzyme before eating (like I'm worried about Soy Sauce, something like that -- I would never try bread or similar).
The tests for celiac disease show and autoantibodies response. If a celiac is GF, the tests will be perfectly normal because they've stopped the autoimmune response.
The tests for celiac are tissue transglutiminase IgA and IgG, deaminated glia din peptides IgA and IgG, and endomysial antibodies IgA, as well as a total IgA test as a control (1 in 20 celiac are deficient in IgA so all IgA based tests give false negatives).
I was tested in tTG IgA and EMA IgA. After 6 months GF, my EMA IgAa was normal but the tTG IgA was still a bit high. After one year GF, everything was finally normal.
They say for most celiac so, you need to eat the equivalent of 1-2 slices of bread a day for 2-3 months in order to make yourself sick enough to test positive. For some, if they eat more gluten, they can do it a shorter time. The endoscopy just needs a month of gluten to show positives.
Even after all that, a quarter if all celiac so get false negatives on some tests.
The tests are mainly useful to know what degree of GF you need to be. As a celiac, I rarely eat out - it isn't very safe. I can't use others' toasters or even their butter. I remember going to a pig roast where they stuffed the pig ( so I couldn't eat it), and then the salad had croutons, the roasted veggies had Worcestershire sauce on it and the scalloped potatoes had crumbs cooked on it. I ate raw veggies. LOL. Someone without celiac might be able to get by with picking out croutons or risking the stuffed pig. KWIM?
It's also handy in places where meals are served like schools, campuses, hospitals and senior residences. Some places won't make accommodations unless you have a diagnosis.
On the other hand, medical and life insurance can get more expensive after a diagnosis. You might want that in place before you get tested. I can never let my life insurance lapse now because we set it up before my diagnosis. Now, I could never afford to start it again.3 -
MikePfirrman wrote: »If I'm still a little weary, I take a gluten digestive enzyme before eating (like I'm worried about Soy Sauce, something like that -- I would never try bread or similar).
There is no real evidence that these pills do anything. They are specifically not marketed to celiac sufferers because if they were the manufacturers would have to prove they work.
A real celiac diagnosis also flags up for your doctors to be on the lookout for associated long term problems in the future like bowel cancer, osteoporosis etc. You don't want your doctor to miss either one of those because they don't have accurate information.2 -
MikePfirrman wrote: »Why do you need to continue to eat gluten, so the tests work? Just curious, I went GF three years ago to support my wife, who was advised to go GF/Dairy free for chronic pain, which helped her greatly.
The ironic thing is if we go out and things get cross contaminated -- happened in Mexico two years ago - they told us they were corn tortillas, turned out they were flour that was deep fried, I'm miserable for days and have a "celiac" rash for a long while before it goes away.
I've been told by a few celiacs I'm likely celiac, just didn't know it. I'm self-employed and to get all this testing, etc can cost you thousands of dollars. Why continue to eat gluten and why do I need it then? I understand if I'm doing testing it will not be accurate but why continue to eat it if I know it's going to make me sick for days? Seems counterintuitive. I actually don't mind being GF. It's actually fairly easy to be honest. Dairy free? That's the painful part and very, very hard to go out avoiding the dairy (my wife's primary allergy).
Not trying to be a smartass, just wondering what the benefits would be. I know I get sick as hell eating gluten and I'm careful to avoid it. Why get diagnosed then? I know that I had other slight symptoms before that I never put together. I suppose the benefit would be knowing for sure but I'm also not sure I'd want to put myself through that.
We go out to eat very little and if we do, and I'm not 100% sure that it's GF, I ask. If I'm still a little weary, I take a gluten digestive enzyme before eating (like I'm worried about Soy Sauce, something like that -- I would never try bread or similar).
The tests for celiac disease show and autoantibodies response. If a celiac is GF, the tests will be perfectly normal because they've stopped the autoimmune response.
The tests for celiac are tissue transglutiminase IgA and IgG, deaminated glia din peptides IgA and IgG, and endomysial antibodies IgA, as well as a total IgA test as a control (1 in 20 celiac are deficient in IgA so all IgA based tests give false negatives).
I was tested in tTG IgA and EMA IgA. After 6 months GF, my EMA IgAa was normal but the tTG IgA was still a bit high. After one year GF, everything was finally normal.
They say for most celiac so, you need to eat the equivalent of 1-2 slices of bread a day for 2-3 months in order to make yourself sick enough to test positive. For some, if they eat more gluten, they can do it a shorter time. The endoscopy just needs a month of gluten to show positives.
Even after all that, a quarter if all celiac so get false negatives on some tests.
The tests are mainly useful to know what degree of GF you need to be. As a celiac, I rarely eat out - it isn't very safe. I can't use others' toasters or even their butter. I remember going to a pig roast where they stuffed the pig ( so I couldn't eat it), and then the salad had croutons, the roasted veggies had Worcestershire sauce on it and the scalloped potatoes had crumbs cooked on it. I ate raw veggies. LOL. Someone without celiac might be able to get by with picking out croutons or risking the stuffed pig. KWIM?
It's also handy in places where meals are served like schools, campuses, hospitals and senior residences. Some places won't make accommodations unless you have a diagnosis.
On the other hand, medical and life insurance can get more expensive after a diagnosis. You might want that in place before you get tested. I can never let my life insurance lapse now because we set it up before my diagnosis. Now, I could never afford to start it again.
Thank you, very useful. I don't think I'm as severe as you. I'm OK as long as it's not eating bread or dough or something like meatballs, sauce, beer, etc. (obvious things).
I'm also very, very concerned about medical insurance and life insurance too. My wife is already labeled with Fibro. We're in our mid 50s and I'm self-employed and don't get any help through subsidies. I'm already paying over 20K a year now on average between premiums/out of pockets for just OK insurance. Don't need that to go up any more!
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MikePfirrman wrote: »If I'm still a little weary, I take a gluten digestive enzyme before eating (like I'm worried about Soy Sauce, something like that -- I would never try bread or similar).
There is no real evidence that these pills do anything. They are specifically not marketed to celiac sufferers because if they were the manufacturers would have to prove they work.
A real celiac diagnosis also flags up for your doctors to be on the lookout for associated long term problems in the future like bowel cancer, osteoporosis etc. You don't want your doctor to miss either one of those because they don't have accurate information.
I do think it would be foolish to use any enzyme if someone were truly Celiac and then go out and eat bread or pizza and pretend a pill will help them. That's not (I don't think) the pill intent, though I'm sure some people (like the guy in this thread below) think that. I think they are mostly for cross contamination issues. Whether they work or not isn't up for me to decide. Perhaps it's placebo but I've never had a reaction with taking enzymes along with really watching what I choose in a restaurant and consulting with the kitchen/servers. Again, I don't eat out often and make sure I stay GF, so perhaps it's all placebo but this thread seems to indicate others that truly have strong gluten sensitivities do the same and I'm not unique.
https://www.celiac.com/forums/topic/22864-gluten-ease/
Those other issued you mention do concern me as well and that's why I asked the question. It's certainly something longer term to consider. Thanks.0 -
kommodevaran wrote: »That's two problems in one - celiac disease, which means you have to stay away from gluten to avoid getting very very ill, and falling for hype, which means you are cutting out a staple of your diet to feel hip and cool and health conscious, and creating all kinds of difficulties for yourself, for no good reason.
There’s also gluten allergy which is different from celiac where it’s an actual allergy, celiac disease is actually a problem with the intentional track
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MikePfirrman wrote: »MikePfirrman wrote: »Why do you need to continue to eat gluten, so the tests work? Just curious, I went GF three years ago to support my wife, who was advised to go GF/Dairy free for chronic pain, which helped her greatly.
The ironic thing is if we go out and things get cross contaminated -- happened in Mexico two years ago - they told us they were corn tortillas, turned out they were flour that was deep fried, I'm miserable for days and have a "celiac" rash for a long while before it goes away.
I've been told by a few celiacs I'm likely celiac, just didn't know it. I'm self-employed and to get all this testing, etc can cost you thousands of dollars. Why continue to eat gluten and why do I need it then? I understand if I'm doing testing it will not be accurate but why continue to eat it if I know it's going to make me sick for days? Seems counterintuitive. I actually don't mind being GF. It's actually fairly easy to be honest. Dairy free? That's the painful part and very, very hard to go out avoiding the dairy (my wife's primary allergy).
Not trying to be a smartass, just wondering what the benefits would be. I know I get sick as hell eating gluten and I'm careful to avoid it. Why get diagnosed then? I know that I had other slight symptoms before that I never put together. I suppose the benefit would be knowing for sure but I'm also not sure I'd want to put myself through that.
We go out to eat very little and if we do, and I'm not 100% sure that it's GF, I ask. If I'm still a little weary, I take a gluten digestive enzyme before eating (like I'm worried about Soy Sauce, something like that -- I would never try bread or similar).
The tests for celiac disease show and autoantibodies response. If a celiac is GF, the tests will be perfectly normal because they've stopped the autoimmune response.
The tests for celiac are tissue transglutiminase IgA and IgG, deaminated glia din peptides IgA and IgG, and endomysial antibodies IgA, as well as a total IgA test as a control (1 in 20 celiac are deficient in IgA so all IgA based tests give false negatives).
I was tested in tTG IgA and EMA IgA. After 6 months GF, my EMA IgAa was normal but the tTG IgA was still a bit high. After one year GF, everything was finally normal.
They say for most celiac so, you need to eat the equivalent of 1-2 slices of bread a day for 2-3 months in order to make yourself sick enough to test positive. For some, if they eat more gluten, they can do it a shorter time. The endoscopy just needs a month of gluten to show positives.
Even after all that, a quarter if all celiac so get false negatives on some tests.
The tests are mainly useful to know what degree of GF you need to be. As a celiac, I rarely eat out - it isn't very safe. I can't use others' toasters or even their butter. I remember going to a pig roast where they stuffed the pig ( so I couldn't eat it), and then the salad had croutons, the roasted veggies had Worcestershire sauce on it and the scalloped potatoes had crumbs cooked on it. I ate raw veggies. LOL. Someone without celiac might be able to get by with picking out croutons or risking the stuffed pig. KWIM?
It's also handy in places where meals are served like schools, campuses, hospitals and senior residences. Some places won't make accommodations unless you have a diagnosis.
On the other hand, medical and life insurance can get more expensive after a diagnosis. You might want that in place before you get tested. I can never let my life insurance lapse now because we set it up before my diagnosis. Now, I could never afford to start it again.
Thank you, very useful. I don't think I'm as severe as you. I'm OK as long as it's not eating bread or dough or something like meatballs, sauce, beer, etc. (obvious things).
I'm also very, very concerned about medical insurance and life insurance too. My wife is already labeled with Fibro. We're in our mid 50s and I'm self-employed and don't get any help through subsidies. I'm already paying over 20K a year now on average between premiums/out of pockets for just OK insurance. Don't need that to go up any more!
That's where it is handy to know. You can't really go by symptom severity. I've met people with NCGI who had much more severe gastrointestinal symptoms than me. My main symptoms was stomach aches in the evening, migraines and arthritis. The mist common celiac symptom is anemia. I've actually heard that up to 80% of celiac so don't have stomach symptoms. That seems high to me, but I'd guess as high as 50%.
I've been glutened in small amounts and did notice much except a general sense of feeling unwell. It feels almost like I'm getting a flu but I never get the sinus congestion, if that makes sense. If I get repeatedly exposed, or get a large gluten exposure, then I start to get more obvious symptoms. That flu-ish feeling means my body has started the autoimmune reaction though.
I just mention it because I believe that if someone suspects a gluten sensitivity but has not ruled out celiac disease, then I think they should treat it like celiac disease and avoid even the mist minute exposure. You just don't know if you gave it so you could basically be shortening your life every time you risk a gluten exposure. KWIM?
My kids have some obvious reactions to gluten. They tested negative but knowing the higher false negative rate for kids, and that their mom has it, they eat very strictly GF just as a celiac would. Just to be safe.
Best wishes.
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