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cbochner

Gluten Major Cheat (Going Crazy)

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Hi All,

I'm gluten sensetive and generally show Depressive/Mental symptoms as a latency affect after checting on gluten. I cheated big time last week and suffered some consequences and am now gluten-free for full 4 days. I feel quite depressed and brain foged and am wondering how long I'll feel this way. How long does it take for my body to readjust? Of coure I'll be more careful but would like to know what's going on.

Please Help.

C.B. :unsure:

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The time it takes varies by person. For me it takes 2 weeks to get everything out of my system. The depression, brain fog, and tiredness are what goes away last for me.

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I don't like the gluten sensitive or gluten intolerant label because it makes people think they can cheat. I'm sorry you are suffering and I'm even more sorry you don't have a celiac diagnosis to make you not cheat.

The tests are fraught with problems. People get false negatives. They get weird results like postive blood test but negative endoscopy. I think people who are gluten sensitive or intolerant really have celiac but the tests are faulty. They aren't sensitive enough to get a really good measure of celiac.

Your symptoms are severe so I think you need to start thinking of yourself as having celiac disease and find a way not to cheat. I know it's just a label, but that label can have consequences in the way you take care of yourself.

Everyone is different. Most people on here don't purposely ingest gluten so usual glutenings are cross contamination. Stay hydrated. Rest if you need to. You can try L Glutamine. Some people say it helps. Eat simple foods and maybe don't have anything hard to digest for awhile.

Hang in there!

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With all I've read over the last 16 months about this, I believe that Gluten Intolerance should be the new paradigm for a the myriad of serious illnesses we are seeing as a direct result of ingesting gluten, even in small amounts. These serious illnesses include Celiac of course, and the scores of other health problems you read about on this forum, and that includes what you suffer from.

Gluten affects my brain, and I know my intolerance is genetic. My mother died of complications from a "benign" brain tumor. Make no mistake. Gluten Intolerance is serious. Everytime you ingest gluten, you damage your body evenmore. And if you continue to do this, the situation will only become worse. Please stop.

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I hope what I said doesn't offend anybody. I am not minimizing gluten intolerance at all. I'm maximizing the seriousness of it. I think it's very serious, but people don't always take it that way. Doctors don't take it serious enough either. They tell people you're "just" intolerant so go ahead and eat some gluten once in awhile. Whereas with celiac they take it more seriously and most doctors (except the total ding dong heads) will tell you to avoid it all costs.

Intolerance, celiac, sensitivity - it all means don't eat gluten.

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I hope what I said doesn't offend anybody. I am not minimizing gluten intolerance at all. I'm maximizing the seriousness of it. I think it's very serious, but people don't always take it that way. Doctors don't take it serious enough either. They tell people you're "just" intolerant so go ahead and eat some gluten once in awhile. Whereas with celiac they take it more seriously and most doctors (except the total ding dong heads) will tell you to avoid it all costs.

Intolerance, celiac, sensitivity - it all means don't eat gluten.

I know exactly what you meant and I agree that the word intolerance is unfortunate, and suggests that you may be able to eat it sometime here and there. I think this is perfectly illustrated by the person who started the thread. Sandsurfgirl, I know you know how serious gluten is. Cbochner, please consider all of this if tempted to ingest something that is only doing you harm.

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Cbochner, what foods are you cheating with? Maybe we can give you some ideas for making them yourself or finding them at a restaurant or store. I've found great subs for most of the foods I really want. I never thought I would get those light little wafer cookies again and there they were at Sprouts made by Glutino. Schar is great. They even have light flaky little lady fingers and you can make tiramisu or I just dip them in coffee or tea. There are lots of good gluten free products out there and lots of stuff you can make yourself.

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I'm gluten sensetive and generally show Depressive/Mental symptoms as a latency affect after checting on gluten. I cheated big time last week and suffered some consequences and am now gluten-free for full 4 days. I feel quite depressed and brain foged and am wondering how long I'll feel this way. How long does it take for my body to readjust? Of coure I'll be more careful but would like to know what's going on.

OMG I get that way from even a small mistake. I can't imagine how bad it would be from eating a lot of gluten.

For me it's 3-4 days of depression and anxiety once it finally hits. I find extra B-complex helps a little with the anxiety. I mostly have to tough it out, especially the brain fog. :(

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I don't like the gluten sensitive or gluten intolerant label because it makes people think they can cheat. I'm sorry you are suffering and I'm even more sorry you don't have a celiac diagnosis to make you not cheat.

The tests are fraught with problems. People get false negatives. They get weird results like postive blood test but negative endoscopy. I think people who are gluten sensitive or intolerant really have celiac but the tests are faulty. They aren't sensitive enough to get a really good measure of celiac.

Your symptoms are severe so I think you need to start thinking of yourself as having celiac disease and find a way not to cheat. I know it's just a label, but that label can have consequences in the way you take care of yourself.

Everyone is different. Most people on here don't purposely ingest gluten so usual glutenings are cross contamination. Stay hydrated. Rest if you need to. You can try L Glutamine. Some people say it helps. Eat simple foods and maybe don't have anything hard to digest for awhile.

Hang in there!

Thank you Sandsurfgirl. It's good to hear this. I tested negative despite trying my hardest (I did a very painful 4 month challenge) but what can you do? Even I test negative, I'm very clearly intolerant to gluten and I feel amazingly better off it. I resolved to behave as if I had celiac - I'm very strict and it's served me well - but it does sometimes get me down when I think people think I'm wishing a disease on myself or I'm faking it or whatever. For all intents and purposes I have celiac, but I feel guilty somehow if I say that. I tend to say "I tested negative to celiac and the docs were really surprised. I'm strictly gluten free". And then you have to walk the talk. More so even than if I had a diagnosis because if I did, people might be 'oh, you shouldn't eat that!' instead of 'huh, so you've given up on that fad diet, hey'? (Not that I've ever cheated but I can imagine this would be the response from many). It's hard not really knowing the degree to which gluten hurts me (beyond the symptoms I get). I like to think that one day the testing will be better and will catch more people. Because I truly believe way more people are on that spectrum than are currently diagnosed.

cbochner, I'm sorry you feel so bad. Everyone's different so I don't know how long it'll take you to recover. But I really hope you feel better soon. And please, make it the last time you cheat.

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Thank you Sandsurfgirl. It's good to hear this. I tested negative despite trying my hardest (I did a very painful 4 month challenge) but what can you do? Even I test negative, I'm very clearly intolerant to gluten and I feel amazingly better off it. I resolved to behave as if I had celiac - I'm very strict and it's served me well - but it does sometimes get me down when I think people think I'm wishing a disease on myself or I'm faking it or whatever. For all intents and purposes I have celiac, but I feel guilty somehow if I say that. I tend to say "I tested negative to celiac and the docs were really surprised. I'm strictly gluten free". And then you have to walk the talk. More so even than if I had a diagnosis because if I did, people might be 'oh, you shouldn't eat that!' instead of 'huh, so you've given up on that fad diet, hey'? (Not that I've ever cheated but I can imagine this would be the response from many). It's hard not really knowing the degree to which gluten hurts me (beyond the symptoms I get). I like to think that one day the testing will be better and will catch more people. Because I truly believe way more people are on that spectrum than are currently diagnosed.

cbochner, I'm sorry you feel so bad. Everyone's different so I don't know how long it'll take you to recover. But I really hope you feel better soon. And please, make it the last time you cheat.

I always advise the self diagnosed to say they have celiac and tell people it was diagnosed by blood tests. It saves you so much trouble and hassle.

If you really want that card carrying diagnosis, you can do Enterolab if it hasn't been a long time for you being gluten free.

The fact that gluten made you that sick for your 4 month challenge (cruel and barbaric on that doctor's part IMO) then I think you have every right to call yourself celiac and be proud of it.

I do not for one minute believe in gluten intolerance or sensitivity. There is so much they do not know about this disease and the tests are crap. I think that every person who gets so sick from gluten has celiac and one day there will be tests to prove it. So mark this down on your calendar and in 10 years we'll see if I'm right.

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I do not for one minute believe in gluten intolerance or sensitivity. There is so much they do not know about this disease and the tests are crap. I think that every person who gets so sick from gluten has celiac and one day there will be tests to prove it. So mark this down on your calendar and in 10 years we'll see if I'm right.

But what if gluten intolerance is what should be studied and not just one carve-out of the possible effects? My problem with all of this is my belief in diligent advocacy and standing on the soap box for all of us who have tested negatively on biopsy for celiac 6 months before an Enterolab, but positively on that test for gluten antibodies, then saw wonderful improvement removing gluten from my diet. I think with that, and all the evidence presented in this very website, which forum name also separates the two, is reason for us to take our heads out of the celiac box and utilize these valuable clues that we amassing. It's powerful evidence but only if we embrace it.

It is only by raising awareness of gluten intolerance that we'll make headway. If everyone in the medical and science community insisted that it must follow all the guidelines for celiac we will never make headway. Because gluten intolerance is more than celiac, and I feel that is the understanding that truly helps people.

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I do not for one minute believe in gluten intolerance or sensitivity. There is so much they do not know about this disease and the tests are crap. I think that every person who gets so sick from gluten has celiac and one day there will be tests to prove it. So mark this down on your calendar and in 10 years we'll see if I'm right.

Nope. There are a lot of very well-documented inflammatory effects of gluten on the intestinal mucosa that don't require antibodies at all. Go look up Fasano's research. In addition to the inflammatory type of reaction to gliadin peptides, sensitivity to wheat germ agglutinin (the wheat lectin) or gliadorphin can cause gluten intolerance, and fructose malabsorption can cause a general intolerance to fructans in wheat. There is also true IgE mediated wheat allergy with mast cell degranulation and histamine release. Probably 1 in 10 people has an issue with wheat. Only about 1 in 100 actually develop celiac autoimmunity; it happens when gluten intolerance goes horribly wrong and is the extreme end of the spectrum.

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Nope. There are a lot of very well-documented inflammatory effects of gluten on the intestinal mucosa that don't require antibodies at all. Go look up Fasano's research. In addition to the inflammatory type of reaction to gliadin peptides, sensitivity to wheat germ agglutinin (the wheat lectin) or gliadorphin can cause gluten intolerance, and fructose malabsorption can cause a general intolerance to fructans in wheat. There is also true IgE mediated wheat allergy with mast cell degranulation and histamine release. Probably 1 in 10 people has an issue with wheat. Only about 1 in 100 actually develop celiac autoimmunity; it happens when gluten intolerance goes horribly wrong and is the extreme end of the spectrum.

Wow now I didn't know all of that. Very interesting.

The problem with the gluten intolerance label is that people think it's not as bad and they seem more likely to cheat. Maybe if there was another word. I don't know... if gluten makes you sick you can't eat it. That's the most important thing that needs to be out there.

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Or is it possible that gluten sensitivity/intolerance is the basis of it all? Is celiac just one of a variety of immune problems caused by gluten intolerance?

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Wow now I didn't know all of that. Very interesting.

The problem with the gluten intolerance label is that people think it's not as bad and they seem more likely to cheat. Maybe if there was another word. I don't know... if gluten makes you sick you can't eat it. That's the most important thing that needs to be out there.

Again it depends. If you are allergic get hives from bread but a little soy sauce doesn't bother you, the soy sauce will actually help keep you stay somewhat desensitized. Going 100% off wheat can set you up for anaphylaxis. If you have "leaky gut" and the lectins or glidaorphins are the problem, it's dose dependent and CC or even a crouton won't matter much. Same with fructose malabsorption. You have a fructose "budget" and can eat a little wheat with a low-fructose meal or some dextrose.

With the inflammatory intolerance Fasano is researching there are no antibodies to make, so eating gluten always provokes the innate immune reaction. There are many more folks with this kind of intolerance than celiac, and it can overlap where you get both. Fasano thinks the inflammation may even lead to celiac in some people. Contrast the relatively fast reaction from intolerance to blood & biopsy positive celiacs who have no clue they ate gluten, where it takes weeks to start making antibodies and then feeling ill. I bet many celiacs have the inflammatory intolerance since they react fast; I suspect folks with silent celiac are a little different. The inflammation from eating gluten can also cause thyroid problems and inflame the gut badly enough to cause malabsorption on its own. This is the thyroid-gluten link and why there is growing evidence Hashimoto's folks might be better off gluten-free.

You mention the possibility of false negative celiac testing and it is a real issue. One thing to remember is that someone with celiac will go steadily downhill if they keep eating gluten, right? I think a lot of people on the diet who tested negative figure out their personal "sweet spot", whether it's 100% gluten free with no CC or simply picking the croutons off a salad. I bet the folks with the "sweet spot" that's 100% gluten free are the negative-test celiacs. I don't know but it will sure be interesting to find out when they get tests that don't require gluten challenge.

You DO have to go 100% gluten free to start out. Otherwise if your personal "sweet spot" is gluten-free with no CC you'll never feel better to know.

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I'd like to add in to what Skylark has already said.

There *is* such a thing as gluten intolerance and it does not mean the person has celiac.

While some outward symptoms may be the same, people who have non-celiac gluten intolerance do not have the same damage to the small intestines that people with celiac do.

People that I know personally with gluten intolerance seem to be a little worse in the short term than I am. I know the long-term effects on my body (the damage being related to the malabsorption of nutrients) but my short term effects aren't always the same GI symptoms as those who are gluten-sensitive / intolerant.

I hate the word "cheating" in relation to this "diet." It makes it sound flippant.

I don't really consider this a diet for me - it's just the way things are.

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Again it depends. If you are allergic get hives from bread but a little soy sauce doesn't bother you, the soy sauce will actually help keep you stay somewhat desensitized. Going 100% off wheat can set you up for anaphylaxis. If you have "leaky gut" and the lectins or glidaorphins are the problem, it's dose dependent and CC or even a crouton won't matter much. Same with fructose malabsorption. You have a fructose "budget" and can eat a little wheat with a low-fructose meal or some dextrose.

With the inflammatory intolerance Fasano is researching there are no antibodies to make, so eating gluten always provokes the innate immune reaction. There are many more folks with this kind of intolerance than celiac, and it can overlap where you get both. Fasano thinks the inflammation may even lead to celiac in some people. Contrast the relatively fast reaction from intolerance to blood & biopsy positive celiacs who have no clue they ate gluten, where it takes weeks to start making antibodies and then feeling ill. I bet many celiacs have the inflammatory intolerance since they react fast; I suspect folks with silent celiac are a little different. The inflammation from eating gluten can also cause thyroid problems and inflame the gut badly enough to cause malabsorption on its own. This is the thyroid-gluten link and why there is growing evidence Hashimoto's folks might be better off gluten-free.

You mention the possibility of false negative celiac testing and it is a real issue. One thing to remember is that someone with celiac will go steadily downhill if they keep eating gluten, right? I think a lot of people on the diet who tested negative figure out their personal "sweet spot", whether it's 100% gluten free with no CC or simply picking the croutons off a salad. I bet the folks with the "sweet spot" that's 100% gluten free are the negative-test celiacs. I don't know but it will sure be interesting to find out when they get tests that don't require gluten challenge.

You DO have to go 100% gluten free to start out. Otherwise if your personal "sweet spot" is gluten-free with no CC you'll never feel better to know.

This is very interesting reading and I should follow up more on the research. I read a lot about 18 months ago, but haven't since. It was the neurological symptoms and research I read that showed people with neuro symptoms often didn't test positive to the regular celiac tests that scared me into being 100% gluten free. I suspect that if they ever develop a better test for that aspect of the damage, I'd test positive (or would've tested positive).

And yes, it's different to the fructose budget. I'm more sensitive to sorbitol than fructans but I can tolerate small amounts (and of lactose). Following the low FODMAP diet is kind of how the rest of the world see being gluten free. A little bit really is ok and you kind of work out that level. Whereas I'm super strict with gluten, I don't care if pasta sauce has a little bit of onion, and if I really feel like a nectarine, I'll eat one knowing that I will end up looking pregnant.

Sandsurfgirl, unfortunately, I'm the one who tortured myself with the 4 month challenge. I was determined to get a real result and I'd been gluten free. I couldn't do that to myself again, but I think it put me in a good place to go 100% gluten free without a diagnosis (and the blow of a negative one and my GP telling me there was no way I had celiac). I felt so awful and I kept reading here about how great people felt and I tried it and the magic promised was revealed to me and I never went back. If I hadn't done such a horrendously gluten-y challenge (I basically binged for 4 months, gained 15 pounds and all) then I don't think I would've had the right mind set to cope with the negative diagnosis in the positive way I did. Not that I could recommend that to any one, I felt like death.

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Sandsurfgirl, unfortunately, I'm the one who tortured myself with the 4 month challenge. I was determined to get a real result and I'd been gluten free. I couldn't do that to myself again, but I think it put me in a good place to go 100% gluten free without a diagnosis (and the blow of a negative one and my GP telling me there was no way I had celiac). I felt so awful and I kept reading here about how great people felt and I tried it and the magic promised was revealed to me and I never went back. If I hadn't done such a horrendously gluten-y challenge (I basically binged for 4 months, gained 15 pounds and all) then I don't think I would've had the right mind set to cope with the negative diagnosis in the positive way I did. Not that I could recommend that to any one, I felt like death.

Adversity does make you stronger and I absolutely love your positive spin on that.

I've had some big health challenges that I've been posting about the past couple of months including a 10 day hospital stay and the flu for 3 weeks after the hospital.

As horrible as it's been and as much as I never want to go through this again, it has had a deep and profound life altering affect on me spiritually and personally. I'm a Christian and my relationship with God is completely different in this past 2 months. We have always been a close family but this brought us together in really strong ways and my husband and I have really bonded because of this.

I started reading about positive thinking and the mind body connection and the power of earnest prayer for healing. This ordeal has shown me so many of my negative thinking patterns and I am really changing how I view things and how I react to things.

So there can be blessings to the suffering if you look for them.

But I would like there to be less suffering and more knowledgable doctors for celiacs because we shouldn't go through what happens to so many of us.

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OMG I get that way from even a small mistake. I can't imagine how bad it would be from eating a lot of gluten.

For me it's 3-4 days of depression and anxiety once it finally hits. I find extra B-complex helps a little with the anxiety. I mostly have to tough it out, especially the brain fog. :(

It's been about a week and I still have extreme anxiety and irritability. Can it still be gluten? I'm very careful now and am awaiting relief. I'm just not the same anymore.

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May be a bit of withdrawal or if you are being vigilant about any type of gluten cross contamination then you may have additional food sensitivities - very common.

I recall feeling the way you do at first when I just stopped eating gluten, but it was suggested to me to try remvoing dairy and soy as well. Excellent advice, since I quickly found that dairy and soy give me the same neuro symptoms as gluten and I didn't feel great until about 3 weeks to a month after getting all traces of all 3 intolerances out of my system. You may see a bit of withdrawal symptoms at first but that's normal and they will pass. In time you may be able to add the dairy back but your body needs time to get rid of the offenders.

Please keep writing to say how you're doing and reading posts. I know it seems like a lot to be thinking about but it's sooooo worth how good you feel on the other side of gluten.

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It's been about a week and I still have extreme anxiety and irritability. Can it still be gluten? I'm very careful now and am awaiting relief. I'm just not the same anymore.

I'm so sorry to hear that. I know how awful that anxiety and irritability gets! :(

I've not personally had a reaction much longer than four days. Fish oil is really huge for me when I'm anxious and hypomanic/irritable. I'll take up to four double-strength capsules a day - one with each meal and one at bedtime. Other things that help for anxiety are inositol powder (my shrink friend says it's safe up to 12g/day in divided doses), and sometimes amino acid supplements can be calming. Twinlabs amino fuel is the one I used to use when my mind was really messed up from gluten.

You may have also gotten some autoimmune damage. L-glutamine is supposed to be helpful for healing the gut. You will get enough in an amino acid supplement or you can buy it alone. There's also never any harm in taking a good probiotic.

Maybe something on this rambling list will help. I totally understand the mental feeling. I used to be horribly mentally ill from gluten and I know that anxious, jumpy space better than I would like. You have my total empathy and support.

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