Gluten free

cwsweetpea28
cwsweetpea28 Posts: 25 Member
edited November 27 in Food and Nutrition
Anyone on here have this problem

Replies

  • livingleanlivingclean
    livingleanlivingclean Posts: 11,751 Member
    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.
  • Hamsibian
    Hamsibian Posts: 1,388 Member
    I eat gluten free (among other restrictions). What's the problem?
  • workinonit1956
    workinonit1956 Posts: 1,043 Member
    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.
  • prettyash777
    prettyash777 Posts: 4 Member
    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.
  • WholeFoods4Lyfe
    WholeFoods4Lyfe Posts: 1,518 Member
    edited July 2018
    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.
  • smolmaus
    smolmaus Posts: 442 Member
    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.

  • workinonit1956
    workinonit1956 Posts: 1,043 Member
    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.
  • workinonit1956
    workinonit1956 Posts: 1,043 Member
    @smolmaus we posted at the same time!
  • smolmaus
    smolmaus Posts: 442 Member
    @workinonit1956 lol great minds!

  • MikePfirrman
    MikePfirrman Posts: 3,307 Member
    edited July 2018
    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).

  • WholeFoods4Lyfe
    WholeFoods4Lyfe Posts: 1,518 Member
    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.
  • Punchin40
    Punchin40 Posts: 5 Member
    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!
  • MikePfirrman
    MikePfirrman Posts: 3,307 Member
    edited July 2018
    @ 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.
  • nvmomketo
    nvmomketo Posts: 12,019 Member
    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.
  • smolmaus
    smolmaus Posts: 442 Member
    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.
  • MikePfirrman
    MikePfirrman Posts: 3,307 Member
    nvmomketo 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!
  • MikePfirrman
    MikePfirrman Posts: 3,307 Member
    edited July 2018
    smolmaus 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.
  • CortCortK
    CortCortK Posts: 26 Member
    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
  • nvmomketo
    nvmomketo Posts: 12,019 Member
    nvmomketo 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. :)
  • workinonit1956
    workinonit1956 Posts: 1,043 Member
    @MikePfirrman that link you posted-I remember it well! I was part of the moderating team there for 8 + years and anytime the enzyme topic was brought up, things would sometimes go downhill quickly. One thing is certain-enzymes do nothing for an autoimmune reaction.
    There are many people who choose to just remain gluten free without a diagnosis. Some for insurance reasons like yourself and others simply don’t want to go back on gluten for testing because they feel so much better off of it. The treatment is the same either way. There are potential serious health concerns for Celiacs, which have been covered here already, (anemia, brain fog, peripheral neuropathy, vitamin and mineral deficiencies, edema, depression, anxiety, etc) with the most serious being intestinal lymphoma. FWIW, The last time I saw my gastroenterologist in 2016 I was told they didn’t feel the need for me to have any more follow up endoscopic testing (I was diagnosed in 2005). Celiac is an autoimmune disease, and irregardless of symptom severity, people with it need to be scrupulous about their diet. In other words, you can’t go by how severe your reactions are. I’ve seen people who were incapacitated by their symptoms and a woman who had absolutely none. She was tested only because her sister was diagnosed and she came up positive.
    Best of luck with everything!


  • smolmaus
    smolmaus Posts: 442 Member
    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.

    Even if they do harm at all I am just ethically opposed to the marketing of unproven and largely unregulated medications. Particularly for "my disease" if you know what I mean.

    Just because you've had no reaction means nothing, there could have been no cross contamination, there could have been but not enough to cause a reaction, you could be having a reaction and not noticing, you might not even have celiac or a gluten intolerance because you haven't been tested. You could have a FODMAP sensitivity or wheat allergy or any number of things that wouldn't have been triggered anyway.

    Please don't buy the snake oil pills.

  • MikePfirrman
    MikePfirrman Posts: 3,307 Member
    Thanks, still trying to learn. A lot to think about. TBH, I've been mostly focused on my wife's health for around 5 years. I've largely ignored anything related to my health because since going GF, I've felt pretty good and have seen signs that I might have been more sensitive than I'd like to admit in the past (probably TMI, but things years ago like bloody stools, etc). I'll probably look into it soon. Sorry to ask so many questions on a thread that I didn't start to the OP!! I apologize for that!
  • Silkysausage
    Silkysausage Posts: 502 Member
    edited July 2018
    Yes, just found out I have non coeliac gluten intolerance after 4 years of being told I have IBS. Previous coeliac test came back negative, hence why I carried on eating wheat.

    As of yesterday I've cut out all wheat, oats and brewers yeast (B12) and my stomach is no longer in pain or the size of a 6 month pregnant woman!

    This is only the start, it can take months to a year for your body to expel the proteins from years of eating gluten.

    The hardest part has been the stomach distension and exercise fatigue, so abnormally sweaty and tired I now take electrolytes before weight lifting.
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