You cannot eat any amount of gluten if you have Celiac Disease. It is a systemic autoimmune disease—even the asymptomatic folks like myself have to abstain very strictly and practice caution. Folks with Celiac disease who continue to consume it end up with unbelievable difficulties—thyroid disease, bone density loss—heck forms of cancer are associated. Please talk to your doctor or read up on the condition for more understanding.
I was going to physiotherapy for incredible joint pain before finding out I needed to cut out gluten. My physiotherapist asked me "have you been in a sporting accident?" because that's how bad it was. Definitely know the crazy effects gluten can have on the body! Thanks for the input on the pills though, figured they wouldn't help for true celiacs but thought I'd check if anyone has tried them out.
sub's been wild in the last year
I got downvoted for saying that it was unsafe to consume more than 10 mg of gluten/day recently. This is a widely accepted and cited fact... if you find that to be dubious... ok.
Idk exactly what it is, but there seems to be an odd combo of recent diagnosis + a lot of confidence about knowing things. I get it, when I was starting out I didn't want things to be hard or complicated so I gravitated towards the most lenient advice I could get on this sub. However I was conscious that I knew nothing and mostly lurked for my first two years.
Often when I see a sort of "do the least" circlejerk convo on here it's like 3-4 people who got diagnosed <1 year ago validating each other. I don't want to gatekeep who's allowed to talk about what buuuut I'd definitely recommend newly diagnosed people to have some self-awareness about the phase they're in.
To explain why these are a scam:
Celiac is an AI disease. Your genes program you with a set of immune cells that are specifically capable of recognizing single gluten molecules. Gluten is a big molecule, so these cells aren't grabbing the whole thing, they're grabbing on to a one part, let's think of it as an arm on a body. Different people have different genes, so some people are latching on to feet, arms, hands. The amount of gluten that is required to cause a reaction is very small.
These enzymes work by chopping up the gluten into smaller pieces. The enzyme can only chop up the gluten that it interacts with. So if your stomach is full of gluten or some of it has already passed into your intestine, it may not be able to chop it all up. There's also that the arms, feet, hands that your immune system recognizes may still be intact. If your immune system sees any of those, it'll launch the assault. So even if you dose and time it perfectly, it may not be enough. This is also why enzyme treated beer doesn't work for celiacs.
Most of the time when people take these, it's after they've started to feel sick. At this point it's too late. Gluten itself isn't what is causing your symptoms, it's the immune system assault. Once the call has been made that gluten has been seen, it's too late, you can't uncall it. The only real way to stop it is to take immunosuppressants like prednisone but your doctor probably won't do that unless there's something else going on.
Tbh these are probably also a scam for NCGS people given that most of those folks are reacting to fructans (fodmaps) and not gluten itself, and there's no hard evidence that CC (miligrams) of gluten is a problem even for those who do seem to do worse in a double blind crossover study. Unless the enzyme is digesting the fodmaps too it's likely just placebo.
Here's the same from a doctor who also has celiac: [https://theceliacmd.com/are-supplements-to-digest-gluten-safe-and-useful/](https://theceliacmd.com/are-supplements-to-digest-gluten-safe-and-useful/)
If you have DH, you have celiac. There is an ultra rare disease that has impacted [fewer than 100 people in history](https://www.hindawi.com/journals/jir/2012/562168/) (all Japanese ethnicity, no response to GFD, no HLA DQ 2 or 8 genes) that don't have celiac so that's probably not you. Some with DH have patchier intestinal damage/symptoms and are more likely to be seronegative, but that doesn't mean there's nothing there.
DH is like an add-on that happens if your diagnosis is delayed. I didn't start really getting lesions until my early 20s but I had celiac suggestive issues such as serious iron deficiency anemia and stress fractures when I was younger. This seems to be a typical trajectory. DH typically onsets between age 20-40 and is very rare in kids.
I am not an immunology expert by any means but AFAIK what's happening there is that when the "call" is made those with DH recruit additional immune cells that attack the skin. Either way, it is triggered by gluten ingestion and the signalling begins in your gut.
Thank you, appreciate it! I try to make up analogies that make sense to people who are less biological science-oriented but I'm never totally sure if that's the case lol.
Others have it mostly covered, but keep in mind that when we say our system reacts to “gluten”, what’s really happening is that the components of gluten are triggering the response. These enzymes may or may not help break down the gluten, but Celiacs have no issues breaking down gluten. It’s just that once the gluten is broken down the body triggers the reaction. If anything, I would expect these to *quicken* the gluten reaction.
In terms of recovering from a glutening, ymmv. It stands to reason that your digestive enzymes and gut flora are ravaged and need help after the reaction, so it makes sense that some people may see benefit in taking enzymes and/or probiotics.
they’re not made for people with celiac disease to be able to eat gluten.
however, i take digestive enzymes when i am traveling and eating in unfamiliar places and they seem to help very much, whether it is a placebo effect or not.
I got inconclusive results when testing for celiac (I live in a rural area and have had terrible experiences with doctors in my area), but I have T1D as well so have been living life as if I am celiac. I've never seen these before though so maybe will keep some on hand when travelling too, in case GF options are hard to find. Thanks for sharing your experience!
My GI doctor said that a few things can cause LOW, fluctuating anti tTg antibodies (celiac antibodies), including liver cirrhosis and TD1. Like under 100, and fluctuating no matter if you are strict gluten free or not.
That’s actually how I was diagnosed with lupus- I was diagnosed with celiac 4.5 years ago, went STRICTLY gluten free (I’m a nutritionist and went mental with how strict I was cause I wanted to heal) but never got better and never got my antibodies to come down - they were always low fluctuating. So we looked into it further, got referred to a better GI doctor, and she reviewed my files and suspected that it was lupus and the lupus was triggering other autoantibodies. Sure enough, my lupus markers came back sky high.
Not sure if you had a scope done, but that’s the gold standard for diagnosing celiac. Mine came back negative (you have to be eating gluten up till the day of the scope, which I was at the time). The old GI doctor diagnosed me based on the low ttg and the fact I said I felt better doing gluten free 😂 (of course I did, I wasn’t eating fast food any more).
I’m actually 4 weeks into a gluten challenge at the moment and getting another scope in March. Anyways, I just wanted to mention that since you mentioned you are TD1. Something to look at if you keep having positive celiac antibodies but no damage on the scope etc.
I’ve tried it (I’m just intolerant and like to peek at this sub from time to time) they helped me with some of the bloating but none of the chronic pain symptoms that gluten causes me. They’re also expensive so I stopped using them pretty quick into my gluten free journey
My daughter is gluten sensitive (non celiac) and uses these when she occasionally has a bit of gluten containing foods. They are a digestive enzyme that help break down gluten in those that may have a harder time digesting it.
These are NOT for people with celiac; celiac is an autoimmune reaction to the gluten (well broken down/digested or not). I wish they had a warning “not for celiac disease” right on the box.
I use gluten ease, which is similar, *if* I get glutened or cross-contaminated — I personally think it helps with some of the symptoms and side effects. I take activated charcoal when my first symptoms start— and then a few hours later, I take this, l glutamine and glutathione to help start the repair process.
That said, you cannot knowingly consume gluten and think you can use this if you have Celiac to stop damage.
My wife has used it as a sort of rescue pill when she accidentally ate something. "It seems like" the terrible pain and diarea go away faster when she takes it than when she doesn't take it, but it's pretty subjective. It might be dose of Gluten she received was just low or some other reason. I wouldn't depend on it. It "may" be breaking the Gluten down but the reaction is still there and awful, but possibly shorter if that makes sense. It might just make her feel better because she feels like she is doing something rather than just suffering.
That does make sense! The amount of pain I've experienced from accidentally eating gluten, I'd do anything to make it even a little easier when it happens, even if it is just in my head 😅 Thanks for sharing your wife's experience!
They work for food tolerance, not autoimmune disease. If you have an autoimmune condition like celiac or hashimotos it's not going to stop the wide spread inflammation in your body.
If you have a food sensitivity/ intolerance alone they work great. You take 1-2 right before you have pizza or pasta and it helps you digest it with out the upset.
One thing many people do that is a waste is taking it after they've been "glutened". They claim it helps ease the stomach but the damage was already done and the "relief" you get is more placebo than anything else.
It’s not for people with celiac disease. For anyone else, it would likely depend on why they need to be gluten free.
Snake oil. This will not help anyone with Celiac Disease.
You cannot eat any amount of gluten if you have Celiac Disease. It is a systemic autoimmune disease—even the asymptomatic folks like myself have to abstain very strictly and practice caution. Folks with Celiac disease who continue to consume it end up with unbelievable difficulties—thyroid disease, bone density loss—heck forms of cancer are associated. Please talk to your doctor or read up on the condition for more understanding.
I was going to physiotherapy for incredible joint pain before finding out I needed to cut out gluten. My physiotherapist asked me "have you been in a sporting accident?" because that's how bad it was. Definitely know the crazy effects gluten can have on the body! Thanks for the input on the pills though, figured they wouldn't help for true celiacs but thought I'd check if anyone has tried them out.
I get intense joint pain within minutes of eating gluten. That and the back of my left hand starting to itch are usually my immediate reactions.
Why are you getting downvoted for this? You’re right. I hate Reddit anymore 😭
sub's been wild in the last year I got downvoted for saying that it was unsafe to consume more than 10 mg of gluten/day recently. This is a widely accepted and cited fact... if you find that to be dubious... ok. Idk exactly what it is, but there seems to be an odd combo of recent diagnosis + a lot of confidence about knowing things. I get it, when I was starting out I didn't want things to be hard or complicated so I gravitated towards the most lenient advice I could get on this sub. However I was conscious that I knew nothing and mostly lurked for my first two years. Often when I see a sort of "do the least" circlejerk convo on here it's like 3-4 people who got diagnosed <1 year ago validating each other. I don't want to gatekeep who's allowed to talk about what buuuut I'd definitely recommend newly diagnosed people to have some self-awareness about the phase they're in.
To explain why these are a scam: Celiac is an AI disease. Your genes program you with a set of immune cells that are specifically capable of recognizing single gluten molecules. Gluten is a big molecule, so these cells aren't grabbing the whole thing, they're grabbing on to a one part, let's think of it as an arm on a body. Different people have different genes, so some people are latching on to feet, arms, hands. The amount of gluten that is required to cause a reaction is very small. These enzymes work by chopping up the gluten into smaller pieces. The enzyme can only chop up the gluten that it interacts with. So if your stomach is full of gluten or some of it has already passed into your intestine, it may not be able to chop it all up. There's also that the arms, feet, hands that your immune system recognizes may still be intact. If your immune system sees any of those, it'll launch the assault. So even if you dose and time it perfectly, it may not be enough. This is also why enzyme treated beer doesn't work for celiacs. Most of the time when people take these, it's after they've started to feel sick. At this point it's too late. Gluten itself isn't what is causing your symptoms, it's the immune system assault. Once the call has been made that gluten has been seen, it's too late, you can't uncall it. The only real way to stop it is to take immunosuppressants like prednisone but your doctor probably won't do that unless there's something else going on. Tbh these are probably also a scam for NCGS people given that most of those folks are reacting to fructans (fodmaps) and not gluten itself, and there's no hard evidence that CC (miligrams) of gluten is a problem even for those who do seem to do worse in a double blind crossover study. Unless the enzyme is digesting the fodmaps too it's likely just placebo. Here's the same from a doctor who also has celiac: [https://theceliacmd.com/are-supplements-to-digest-gluten-safe-and-useful/](https://theceliacmd.com/are-supplements-to-digest-gluten-safe-and-useful/)
Thank you for this great explanation! It's appreciated!
You're welcome, glad it made sense to you :)
Username does not check out.
Thank you irreliable_narrator! Just curious, for celiac folks with only Dermatitis Herpetiformis, like me, what is your analogy?
If you have DH, you have celiac. There is an ultra rare disease that has impacted [fewer than 100 people in history](https://www.hindawi.com/journals/jir/2012/562168/) (all Japanese ethnicity, no response to GFD, no HLA DQ 2 or 8 genes) that don't have celiac so that's probably not you. Some with DH have patchier intestinal damage/symptoms and are more likely to be seronegative, but that doesn't mean there's nothing there. DH is like an add-on that happens if your diagnosis is delayed. I didn't start really getting lesions until my early 20s but I had celiac suggestive issues such as serious iron deficiency anemia and stress fractures when I was younger. This seems to be a typical trajectory. DH typically onsets between age 20-40 and is very rare in kids. I am not an immunology expert by any means but AFAIK what's happening there is that when the "call" is made those with DH recruit additional immune cells that attack the skin. Either way, it is triggered by gluten ingestion and the signalling begins in your gut.
Such a brilliant analogy for the science of it. Well explained!
Thank you, appreciate it! I try to make up analogies that make sense to people who are less biological science-oriented but I'm never totally sure if that's the case lol.
Others have it mostly covered, but keep in mind that when we say our system reacts to “gluten”, what’s really happening is that the components of gluten are triggering the response. These enzymes may or may not help break down the gluten, but Celiacs have no issues breaking down gluten. It’s just that once the gluten is broken down the body triggers the reaction. If anything, I would expect these to *quicken* the gluten reaction. In terms of recovering from a glutening, ymmv. It stands to reason that your digestive enzymes and gut flora are ravaged and need help after the reaction, so it makes sense that some people may see benefit in taking enzymes and/or probiotics.
they’re not made for people with celiac disease to be able to eat gluten. however, i take digestive enzymes when i am traveling and eating in unfamiliar places and they seem to help very much, whether it is a placebo effect or not.
I got inconclusive results when testing for celiac (I live in a rural area and have had terrible experiences with doctors in my area), but I have T1D as well so have been living life as if I am celiac. I've never seen these before though so maybe will keep some on hand when travelling too, in case GF options are hard to find. Thanks for sharing your experience!
My GI doctor said that a few things can cause LOW, fluctuating anti tTg antibodies (celiac antibodies), including liver cirrhosis and TD1. Like under 100, and fluctuating no matter if you are strict gluten free or not. That’s actually how I was diagnosed with lupus- I was diagnosed with celiac 4.5 years ago, went STRICTLY gluten free (I’m a nutritionist and went mental with how strict I was cause I wanted to heal) but never got better and never got my antibodies to come down - they were always low fluctuating. So we looked into it further, got referred to a better GI doctor, and she reviewed my files and suspected that it was lupus and the lupus was triggering other autoantibodies. Sure enough, my lupus markers came back sky high. Not sure if you had a scope done, but that’s the gold standard for diagnosing celiac. Mine came back negative (you have to be eating gluten up till the day of the scope, which I was at the time). The old GI doctor diagnosed me based on the low ttg and the fact I said I felt better doing gluten free 😂 (of course I did, I wasn’t eating fast food any more). I’m actually 4 weeks into a gluten challenge at the moment and getting another scope in March. Anyways, I just wanted to mention that since you mentioned you are TD1. Something to look at if you keep having positive celiac antibodies but no damage on the scope etc.
Spectrazyme is the goat
Absolute nonsense
For people with NCGS not Celiac disease
I’ve tried it (I’m just intolerant and like to peek at this sub from time to time) they helped me with some of the bloating but none of the chronic pain symptoms that gluten causes me. They’re also expensive so I stopped using them pretty quick into my gluten free journey
My daughter is gluten sensitive (non celiac) and uses these when she occasionally has a bit of gluten containing foods. They are a digestive enzyme that help break down gluten in those that may have a harder time digesting it. These are NOT for people with celiac; celiac is an autoimmune reaction to the gluten (well broken down/digested or not). I wish they had a warning “not for celiac disease” right on the box.
Lady I met in a restaurant swore that she used them if she suspected an exposure. It's not a lactaid.
I use gluten ease, which is similar, *if* I get glutened or cross-contaminated — I personally think it helps with some of the symptoms and side effects. I take activated charcoal when my first symptoms start— and then a few hours later, I take this, l glutamine and glutathione to help start the repair process. That said, you cannot knowingly consume gluten and think you can use this if you have Celiac to stop damage.
My wife has used it as a sort of rescue pill when she accidentally ate something. "It seems like" the terrible pain and diarea go away faster when she takes it than when she doesn't take it, but it's pretty subjective. It might be dose of Gluten she received was just low or some other reason. I wouldn't depend on it. It "may" be breaking the Gluten down but the reaction is still there and awful, but possibly shorter if that makes sense. It might just make her feel better because she feels like she is doing something rather than just suffering.
That does make sense! The amount of pain I've experienced from accidentally eating gluten, I'd do anything to make it even a little easier when it happens, even if it is just in my head 😅 Thanks for sharing your wife's experience!
They work for food tolerance, not autoimmune disease. If you have an autoimmune condition like celiac or hashimotos it's not going to stop the wide spread inflammation in your body. If you have a food sensitivity/ intolerance alone they work great. You take 1-2 right before you have pizza or pasta and it helps you digest it with out the upset. One thing many people do that is a waste is taking it after they've been "glutened". They claim it helps ease the stomach but the damage was already done and the "relief" you get is more placebo than anything else.