New studies

[LP023]

  On 3/16/2023 at 9:36 PM, herminia said:

My personal experience (now76 yo) suggests that I have a sensitivity to gluten, that occasional exposure is not harmful TO ME, as I don't find myself wracking with the pain and fatigue previously experienced before diagnosis. I don't go to extremes in my home, other than family is forbidden to leave cookies, cake, and pie on the counter. I am always looking for new gluten free items, not always available, and will sometimes eat something that I know I will pay for if eaten in excess. I deal with it,  but not to extremes.

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This is the way I’m leaning. After being told I had celiacs. I started googling. Shouldn’t have done that. There are woman who won’t pick up their kids if they’ve eaten gluten. They won’t kiss their husbands if they are a sandwich. Even even saw where woman were giving up their shampoo because their hair may get in their mouth and it will make them sick. 😳 People are getting divorced because their spouse made a sandwich in the wrong area of the kitchen. Not going to extremes makes more sense to me. If we go 100% gluten free we get deathly I’ll when we accidentally get exposed to it. Eating a small amount every few months wouldn’t be enough to cause severe damage in most people and may stop the extremes illness of accidentally getting glutened after being 100% gluten free. Apparently we get extremely sensitive to it after not having any at all. I still go back to the “It takes 8 weeks for there to be enough damage to confirm positive.” I’m convinced people who have extreme sensitivity to it may indeed have crohns or mast cell and be in a flare instead of accidentally glutened. We all can have different opinions. I just feel awful for everyone who’s dealing with this in any way. 

[shadycharacter]

  On 3/16/2023 at 11:54 PM, LP023 said:

I still go back to the “It takes 8 weeks for there to be enough damage to confirm positive.” I’m convinced people who have extreme sensitivity to it may indeed have crohns or mast cell and be in a flare instead of accidentally glutened. We all can have different opinions. I just feel awful for everyone who’s dealing with this in any way. 

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I think a gluten challenge before an endoscopy is two weeks, not eight. Also, the villi is not all that matters, some people get neurological problems or an itchy skin rash without much noticeable damage to the villi. 

[Wheatwacked]

  On 3/17/2023 at 2:17 AM, shadycharacter said:

Also, the villi is not all that matters, some people get neurological problems or an itchy skin rash without much noticeable damage to the villi. 

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Under existing guidelines though if you don't have Marsh III villi damage you don't have Celiac Disease.

[LP023]

  On 3/17/2023 at 2:17 AM, shadycharacter said:

I think a gluten challenge before an endoscopy is two weeks, not eight. Also, the villi is not all that matters, some people get neurological problems or an itchy skin rash without much noticeable damage to the villi. 

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6-8 weeks is what I’ve seen on several websites and several of the posts on here. Just one more example of different information from several different sources. No one seems to have the same information on anything when it comes to celiacs. 

[shadycharacter]

  On 3/17/2023 at 4:01 AM, LP023 said:

6-8 weeks is what I’ve seen on several websites and several of the posts on here. Just one more example of different information from several different sources. No one seems to have the same information on anything when it comes to celiacs. 

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6-8 weeks is for detecting antibodies in blood samples, 2 weeks for endoscopy. 

[herminia]

  On 3/16/2023 at 11:54 PM, LP023 said:

This is the way I’m leaning. After being told I had celiacs. I started googling. Shouldn’t have done that. There are woman who won’t pick up their kids if they’ve eaten gluten. They won’t kiss their husbands if they are a sandwich. Even even saw where woman were giving up their shampoo because their hair may get in their mouth and it will make them sick. 😳 People are getting divorced because their spouse made a sandwich in the wrong area of the kitchen. Not going to extremes makes more sense to me. If we go 100% gluten free we get deathly I’ll when we accidentally get exposed to it. Eating a small amount every few months wouldn’t be enough to cause severe damage in most people and may stop the extremes illness of accidentally getting glutened after being 100% gluten free. Apparently we get extremely sensitive to it after not having any at all. I still go back to the “It takes 8 weeks for there to be enough damage to confirm positive.” I’m convinced people who have extreme sensitivity to it may indeed have crohns or mast cell and be in a flare instead of accidentally glutened. We all can have different opinions. I just feel awful for everyone who’s dealing with this in any way. 

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  On 3/16/2023 at 11:54 PM, LP023 said:

This is the way I’m leaning. After being told I had celiacs. I started googling. Shouldn’t have done that. There are woman who won’t pick up their kids if they’ve eaten gluten. They won’t kiss their husbands if they are a sandwich. Even even saw where woman were giving up their shampoo because their hair may get in their mouth and it will make them sick. 😳 People are getting divorced because their spouse made a sandwich in the wrong area of the kitchen. Not going to extremes makes more sense to me. If we go 100% gluten free we get deathly I’ll when we accidentally get exposed to it. Eating a small amount every few months wouldn’t be enough to cause severe damage in most people and may stop the extremes illness of accidentally getting glutened after being 100% gluten free. Apparently we get extremely sensitive to it after not having any at all. I still go back to the “It takes 8 weeks for there to be enough damage to confirm positive.” I’m convinced people who have extreme sensitivity to it may indeed have crohns or mast cell and be in a flare instead of accidentally glutened. We all can have different opinions. I just feel awful for everyone who’s dealing with this in any way. 

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🤗 My thoughts: I agree with you. Celiacs need to be more cautious.....I wont have a regular burger with my family, for instance. I request a bunless burger...only the meat patty with the lettuce n tomato on the side. I'm sure there's cross contamination, but exposure is minimal. Everything in moderation, is my belief. May not be for everyone, but it works for me.

[herminia]

  On 3/17/2023 at 3:21 AM, Wheatwacked said:

Under existing guidelines though if you don't have Marsh III villi damage you don't have Celiac Disease.

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My doctor called it celiac...I go by his diagnosis as I'm not an expert.

[shadycharacter]

  On 3/16/2023 at 11:54 PM, LP023 said:

This is the way I’m leaning. After being told I had celiacs. I started googling. Shouldn’t have done that. There are woman who won’t pick up their kids if they’ve eaten gluten. They won’t kiss their husbands if they are a sandwich. Even even saw where woman were giving up their shampoo because their hair may get in their mouth and it will make them sick. 😳 People are getting divorced because their spouse made a sandwich in the wrong area of the kitchen. Not going to extremes makes more sense to me. If we go 100% gluten free we get deathly I’ll when we accidentally get exposed to it. Eating a small amount every few months wouldn’t be enough to cause severe damage in most people and may stop the extremes illness of accidentally getting glutened after being 100% gluten free. Apparently we get extremely sensitive to it after not having any at all. I still go back to the “It takes 8 weeks for there to be enough damage to confirm positive.” I’m convinced people who have extreme sensitivity to it may indeed have crohns or mast cell and be in a flare instead of accidentally glutened. We all can have different opinions. I just feel awful for everyone who’s dealing with this in any way. 

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There are so many brands of shampoo, why not choose one that is gluten free? There are so many products without wheat starch, why not choose one without? And contamination from kissing is a real thing. I remember someone telling me how she had kissed her boyfriend who was allergic to nuts after she had eaten a piece of nougat. He immediately got a strong, visible reaction, with swelling and redness around the mouth. It's a real thing, but sometimes difficult to accept for people who don't suffer any serious sensitivity themselves.

OK, that example wasn't about gluten, but if there is a choice to avoid gluten contamination why not? It's each individuals personal choice and shouldn't be ridiculed or looked down on. We are all different. While you find it stressful, others may find relief (mentally or symptom-wise) in extra precautions.

The two week gluten challenge is supposed to work for people who may already have healed, otherwise there'd be no need for it. Also, people may only get one chance at that time to do an endoscopy, so the 2 weeks recommendation is likely set with some margin to ensure that there probably will be a result. Some people may of course react we'll before the the end of the two weeks, but is not feasible to do daily endoscopies to check for exactly when that happens. 

If you have a reaction on day 15, perhaps it was already there on day 11 or day 5. Who knows? 

[LP023]

  On 3/17/2023 at 12:27 PM, shadycharacter said:

There are so many brands of shampoo, why not choose one that is gluten free? There are so many products without wheat starch, why not choose one without? And contamination from kissing is a real thing. I remember someone telling me how she had kissed her boyfriend who was allergic to nuts after she had eaten a piece of nougat. He immediately got a strong, visible reaction, with swelling and redness around the mouth. It's a real thing, but sometimes difficult to accept for people who don't suffer any serious sensitivity themselves.

OK, that example wasn't about gluten, but if there is a choice to avoid gluten contamination why not? It's each individuals personal choice and shouldn't be ridiculed or looked down on. We are all different. While you find it stressful, others may find relief (mentally or symptom-wise) in extra precautions.

The two week gluten challenge is supposed to work for people who may already have healed, otherwise there'd be no need for it. Also, people may only get one chance at that time to do an endoscopy, so the 2 weeks recommendation is likely set with some margin to ensure that there probably will be a result. Some people may of course react we'll before the the end of the two weeks, but is not feasible to do daily endoscopies to check for exactly when that happens. 

If you have a reaction on day 15, perhaps it was already there on day 11 or day 5. Who knows? 

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That’s the point I’m trying to make. What works for one doesn’t work for all. When reading this stuff online it causes panic. Too much advice is given online. “Who knows” is correct. That pretty much describes celiacs. It seems nothing is set in stone as far as guidelines and science for celiacs. 

[Scott Adams]

I'd also like to mention, and am not schlepping products here, but from the tons research I've read about GliadinX, which is an AN-PEP based enzyme that has been shown to break down small amounts of gluten in the stomach, before it reaches your intestines (they are also a sponsor here), I'm not sure why super sensitive celiacs don't use this product on a regular basis. I suspect that lots of people could avoid reactions from tiny amounts of contamination if they only took 1-2 pills before any meal that might pose an issue (or before kissing their spouses! 😉 ).

[herminia]

  On 3/11/2023 at 5:34 PM, trents said:

Would you really be willing to allow a small, sub-clinical (asymptomatic) amount of inflammation to be going on in your gut just so you could be less vigilant and indulge yourself now and then? Yes, it is true that once you withdraw gluten from the diet you become more sensitive to it over time but is the alternative acceptable? Do you want to continue to damage your health, even if it is incremental?

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I can see where living alone could allow one to not have gluten contact at all. There are 4 living in our house, however, so it's impossible to require everyone to follow a diet that is perfect for me. We all do the best we can; can't control everything in the world. There are good days mostly, some not so great ones.

[LP023]

  On 3/17/2023 at 5:54 PM, Scott Adams said:

I'd also like to mention, and am not schlepping products here, but from the tons research I've read about GliadinX, which is an AN-PEP based enzyme that has been shown to break down small amounts of gluten in the stomach, before it reaches your intestines (they are also a sponsor here), I'm not sure why super sensitive celiacs don't use this product on a regular basis. I suspect that lots of people could avoid reactions from tiny amounts of contamination if they only took 1-2 pills before any meal that might pose an issue (or before kissing their spouses! 😉 ).

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Something else I’m absolutely blown away by is how many people are diagnosed with celiacs by TTG alone and never had a gene test. If you don’t carry the gene you can’t have celiacs. Gene test should be the first test done with a high TTG. It would prevent unnecessary biopsies and rule out false positives. 

[trents]

  On 3/18/2023 at 4:49 AM, LP023 said:

Something else I’m absolutely blown away by is how many people are diagnosed with celiacs by TTG alone and never had a gene test. If you don’t carry the gene you can’t have celiacs. Gene test should be the first test done with a high TTG. It would prevent unnecessary biopsies and rule out false positives. 

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It's economics 101. Gene tests are expensive and health insurance companies would not go for that on a routine basis. Besides, a positive tTG-IGA can be caused by only a few, relatively unusual conditions other than celiac disease. Having a positive tTG-IGA essentially equates to having one or more celiac genes. Besides that, research is turning up new genes that are likely linked to celiac disease which suggests that not having DQ2 and/or DQ8 may not rule out celiac disease.

[LP023]

  On 3/18/2023 at 5:18 AM, trents said:

It's economics 101. Gene tests are expensive and health insurance companies would not go for that on a routine basis. Besides, a positive tTG-IGA can be caused by only a few, relatively unusual conditions other than celiac disease. Having a positive tTG-IGA essentially equates to having one or more celiac genes. Besides that, research is turning up new genes that are likely linked to celiac disease which suggests that not having DQ2 and/or DQ8 may not rule out celiac disease.

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The gene test would be cheaper than a scope. In the lab had several false positive HIV antibody tests that were confirmed false positive with PCR and more accurate test. It was suppose to be 98% accurate and not surprising they can be false positive for a lot of the same illnesses that also cause false positive TTGs. From Beyond Celiac “The test is skewed not to miss anyone, so in this group it can result in more false positives,” said Green who is also director of the Celiac Disease Center at Columbia University.

There are several different things that can cause a false positive TTG including 

Thyroid disease

Liver disease

Rheumatoid arthritis

Epstein barr virus (mine has always been elevated)

Diabetes

Connective tissue disease

MS

This is just some of the ones we know can cause false positive. Biopsies are suppose to be the gold standard but even that is not 100% accurate because other diseases also damage the villi. Gene tests need to be done. 

[trents]

Gene tests are the least predictive of all the tests that can be run for celiac disease. About 40% of the population have one or more of the genes that so far have been linked to celiac disease but only 1% or so of the population actually develop celiac disease. And which tTG do you speak of? tTG-IGA or tTG-IGG?

[Russ H]

  On 3/18/2023 at 6:01 AM, LP023 said:

This is just some of the ones we know can cause false positive. Biopsies are suppose to be the gold standard but even that is not 100% accurate because other diseases also damage the villi. Gene tests need to be done. 

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Coeliac disease clearly has a strong genetic predisposition as an identical twin has a 75% chance of developing the condition if their twin has it. Some of the genes are known but I suspect that the predisposition stems from the interaction of many genes in a similar way to those affecting height:  thus, when you are over a certain threshold and exposed to environmental triggers, you develop coeliac disease. Currently it is not possible to estimate predisposition from genes alone.

tTG2 antibodies can be used to diagnose coeliac disease if they are high (at least 10x the standard range). Other conditions, particularly inflammatory conditions of the bowel, liver and joints can raise anti-tTG2 but not to the level seen in coeliac disease. Testing for antibodies to deamidated gliadin (DGP) can be used to confirm a low positive anti-tTG2 result. If your result is not definitive, perhaps an anti-DGP could confirm the diagnosis without necessitating an endoscopy.

  On 3/17/2023 at 5:37 PM, LP023 said:

That’s the point I’m trying to make. What works for one doesn’t work for all. When reading this stuff online it causes panic. Too much advice is given online. “Who knows” is correct. That pretty much describes celiacs. It seems nothing is set in stone as far as guidelines and science for celiacs. 

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Many people with coeliac disease have experienced decades of debilitating symptoms before diagnosis, and it is understandable that they are worried about exposure. I was so ill for so long that I don't want gluten anywhere near me. I am not prepared to see how much I can tolerate because I don't want to risk being ill again. Many others feel the same way. If you decide to eat gluten then fine, but I don't think it is right to suggest to others that their illness is imaginary or that it is OK for them to eat gluten. Doing so could make them extremely ill.

[Scott Adams]

They are still discovering new genetic markers that make people susceptible to celiac disease, most recently a certain DQ6 marker, so I don't think we're there yet with ruling out celiac disease on genetic tests alone.

[LP023]

  On 3/18/2023 at 7:39 PM, Russ H said:

Coeliac disease clearly has a strong genetic predisposition as an identical twin has a 75% chance of developing the condition if their twin has it. Some of the genes are known but I suspect that the predisposition stems from the interaction of many genes in a similar way to those affecting height:  thus, when you are over a certain threshold and exposed to environmental triggers, you develop coeliac disease. Currently it is not possible to estimate predisposition from genes alone.

tTG2 antibodies can be used to diagnose coeliac disease if they are high (at least 10x the standard range). Other conditions, particularly inflammatory conditions of the bowel, liver and joints can raise anti-tTG2 but not to the level seen in coeliac disease. Testing for antibodies to deamidated gliadin (DGP) can be used to confirm a low positive anti-tTG2 result. If your result is not definitive, perhaps an anti-DGP could confirm the diagnosis without necessitating an endoscopy.

Many people with coeliac disease have experienced decades of debilitating symptoms before diagnosis, and it is understandable that they are worried about exposure. I was so ill for so long that I don't want gluten anywhere near me. I am not prepared to see how much I can tolerate because I don't want to risk being ill again. Many others feel the same way. If you decide to eat gluten then fine, but I don't think it is right to suggest to others that their illness is imaginary or that it is OK for them to eat gluten. Doing so could make them extremely ill.

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This isn’t really aimed toward those who have severe symptoms. I truly believe a lot of us are misdiagnosed. The tests aren’t as accurate as we believe. There are a lot of things that cause the same intestinal damage and a lot of us can tolerate a lot more gluten than the advice we have been given even when we have truly have celiacs after the intestines have healed. 

[Wheatwacked]

  On 3/18/2023 at 6:01 AM, LP023 said:

Thyroid disease

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Thyroid disease

Liver disease

Rheumatoid arthritis

Epstein barr virus (mine has always been elevated)

Diabetes

Connective tissue disease

MS

 

 

Thyroid Disease

The Celiac and Autoimmune Thyroid Disease Connection And, some studies have shown that thyroid antibodies, which are common in AITD, decrease after implementing a gluten-free diet. For instance, in a 2018 study, 34 women with AITD were divided into two groups; one was put on a gluten-free diet and the other was not. After six months, the women on the gluten-free diet had reduced levels of thyroid antibodies while the other group had no noticeable change.

 

Liver disease

Celiac Disease and Elevated Liver Enzymes: A Review Celiac disease is associated with two different types of liver dysfunction: cryptogenic liver disorders, usually with positive response to GFD; and autoimmune disorders.

 

Rheumatoid arthritis

Coeliac Disease With Rheumatoid Arthritis: An Unusual Association Coeliac disease has a significant association with many autoimmune disorders. It shares many common genetic and immunological features with other autoimmune diseases. Gluten, a gut-derived antigen, is the driver of the autoimmunity seen in coeliac disease. The altered intestinal permeability found in coeliac patients, coupled with a genetic predisposition and altered immunological response, may result in a systemic immune response that is directed against sites other than the gut. Gut-derived antigens may have a role in the pathogenesis of other autoimmune disorders including rheumatoid arthritis.

Epstein Barr

Gluten and EBV: Should I Eat Wheat and Gluten If I Have EBV? We could dive much deeper into gluten here, but from the perspective of your EBV, most in our community would be quick to tell you that removal of gluten was one of the best things they have done on their way to recovery.

Epstein Barr Virus linked to Seven Serious Diseases including Celiac Disease A new study suggests a protein produced by the Epstein-Barr virus can increase the risk of developing celiac disease and six other autoimmune diseases.

Diabetes

Connective Tissue Disorders and Wheat: A New Connection it is clear that in a significant number of affected individuals,  a gluten-free or wheat-free diet is likely to be warranted as a part of nutritional interventions.

MS

Links Between Celiac Disease and MS The study found celiac disease—with at least Marsh III level villous atrophy—in 11.1% of the people with multiple sclerosis compared with just 2.4% of the control subjects. Celiac disease was even more prevalent in first-degree relatives of those with multiple sclerosis—the researchers found it in 32% of those relatives.

 

[Wheatwacked]

Maybe you are not Gluten Sensitive. The only way to really tell is by a month of GFD. If you are not, not eating gluten for a month will be no more than a diagnostic inconvienience, any more than say, not eating apples for a month. But if you are so deep down inside so opposed to a trial, ask yourself if you, and a good portion of the western culture are addicted to it. In itself, probably not a good thing.

[Hypo]

I get LP023's point. 

Let me emphasize right away that I am a hypochondriac and am very careful about my health. 

So, I was always very healthy, never had any problems, gastro, or flu or anything. I was anemic though. Fast forward to my 40s and finally finding the cause of it. TTG off the charts and Marsh 3. I was shocked and went on strict gluten-free diet the same day. 

However, once I calmed down when my antibodies normalized (and relatively quickly considering how high they were), I started viewing the whole thing a bit differently. Perhaps there really are different celiacs out there. Now I am trying to find out what kind of a celiac I am. When I travel, I eat food that is most likely contaminated as sometimes I have no choice. I also take gliadin pills. I figure, they can't hurt. After my travels I usually check my antibodies. They never went up once. The last trip that I did, I think there was the biggest amount of contaminated food so far. Funny thing is, all my non celiac friends had stomach problems throughout, always looking for a toilet, and I was always fine. Makes it harder to explain to them why I need to be so careful. I will now check my antibodies again. If they are up, it means it was the amount of CC that I can't tolerate and I shouldn't eat like this again. And if they are not, maybe, or at least for now, it is the amount that I can eat.

I also agree that stress might be much more harmful than occassional CC to health. Also, there are a number of other things that we know are bad for us and can long term lead to health problems (even if one doesn't smoke or drink, like sedentary life style, sugar, transfats). And yet, those things we eat and do without worry. We don't go, oh my god I ate a whole chocoloate today, this will surely have consequence for my health! 

I am not saying sugar is the same as an AI disease. Also, I am not saying all celiacs are the same. I know there are some really sensitive people who can't have any CC. But in general, if we are so fastidious about gluten, why aren't we about other known "silent" killers? And surely, our overall health is a combination of many factors.

Anyway, I think we should all see what works for us. And if someone is a silent celiac, and can't get regular antibody testing, maybe it's better not to experiment with CC. But if you can monitor your levels and don't have symptoms, maybe you indeed can be safe with occasional cross contamination. 

Again, I am not a doctor and this is not advice for anyone, just my thoughts!

[trents]

  On 3/19/2023 at 10:21 AM, Hypo said:

I get LP023's point. 

Let me emphasize right away that I am a hypochondriac and am very careful about my health. 

So, I was always very healthy, never had any problems, gastro, or flu or anything. I was anemic though. Fast forward to my 40s and finally finding the cause of it. TTG off the charts and Marsh 3. I was shocked and went on strict gluten-free diet the same day. 

However, once I calmed down when my antibodies normalized (and relatively quickly considering how high they were), I started viewing the whole thing a bit differently. Perhaps there really are different celiacs out there. Now I am trying to find out what kind of a celiac I am. When I travel, I eat food that is most likely contaminated as sometimes I have no choice. I also take gliadin pills. I figure, they can't hurt. After my travels I usually check my antibodies. They never went up once. The last trip that I did, I think there was the biggest amount of contaminated food so far. Funny thing is, all my non celiac friends had stomach problems throughout, always looking for a toilet, and I was always fine. Makes it harder to explain to them why I need to be so careful. I will now check my antibodies again. If they are up, it means it was the amount of CC that I can't tolerate and I shouldn't eat like this again. And if they are not, maybe, or at least for now, it is the amount that I can eat.

I also agree that stress might be much more harmful than occassional CC to health. Also, there are a number of other things that we know are bad for us and can long term lead to health problems (even if one doesn't smoke or drink, like sedentary life style, sugar, transfats). And yet, those things we eat and do without worry. We don't go, oh my god I ate a whole chocoloate today, this will surely have consequence for my health! 

I am not saying sugar is the same as an AI disease. Also, I am not saying all celiacs are the same. I know there are some really sensitive people who can't have any CC. But in general, if we are so fastidious about gluten, why aren't we about other known "silent" killers? And surely, our overall health is a combination of many factors.

Anyway, I think we should all see what works for us. And if someone is a silent celiac, and can't get regular antibody testing, maybe it's better not to experiment with CC. But if you can monitor your levels and don't have symptoms, maybe you indeed can be safe with occasional cross contamination. 

Again, I am not a doctor and this is not advice for anyone, just my thoughts!

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How often would you say you get antibody testing done? Do you pay for this out of pocket or does your health insurance cover it? Many people on this forum have trouble convincing their physician to even do an initial celiac antibody test, much less on a repeated basis. But I certainly would agree with your major premise of the wide range of sensitivity to CC in the celiac community, at least as far as symptoms go. But I think it's the "silent killer" part we struggle with. To quote an old proverb, silence is not always golden.

Edited March 19, 2023 by trents

[Scott Adams]

  On 3/19/2023 at 10:21 AM, Hypo said:

I get LP023's point. 

Let me emphasize right away that I am a hypochondriac and am very careful about my health. 

So, I was always very healthy, never had any problems, gastro, or flu or anything. I was anemic though. Fast forward to my 40s and finally finding the cause of it. TTG off the charts and Marsh 3. I was shocked and went on strict gluten-free diet the same day. 

However, once I calmed down when my antibodies normalized (and relatively quickly considering how high they were), I started viewing the whole thing a bit differently. Perhaps there really are different celiacs out there. Now I am trying to find out what kind of a celiac I am. When I travel, I eat food that is most likely contaminated as sometimes I have no choice. I also take gliadin pills. I figure, they can't hurt. After my travels I usually check my antibodies. They never went up once. The last trip that I did, I think there was the biggest amount of contaminated food so far. Funny thing is, all my non celiac friends had stomach problems throughout, always looking for a toilet, and I was always fine. Makes it harder to explain to them why I need to be so careful. I will now check my antibodies again. If they are up, it means it was the amount of CC that I can't tolerate and I shouldn't eat like this again. And if they are not, maybe, or at least for now, it is the amount that I can eat.

I also agree that stress might be much more harmful than occassional CC to health. Also, there are a number of other things that we know are bad for us and can long term lead to health problems (even if one doesn't smoke or drink, like sedentary life style, sugar, transfats). And yet, those things we eat and do without worry. We don't go, oh my god I ate a whole chocoloate today, this will surely have consequence for my health! 

I am not saying sugar is the same as an AI disease. Also, I am not saying all celiacs are the same. I know there are some really sensitive people who can't have any CC. But in general, if we are so fastidious about gluten, why aren't we about other known "silent" killers? And surely, our overall health is a combination of many factors.

Anyway, I think we should all see what works for us. And if someone is a silent celiac, and can't get regular antibody testing, maybe it's better not to experiment with CC. But if you can monitor your levels and don't have symptoms, maybe you indeed can be safe with occasional cross contamination. 

Again, I am not a doctor and this is not advice for anyone, just my thoughts!

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Many studies have been done which show that the health risks associated with asymptomatic celiacs are the same as those who have symptoms, so I would definitely not recommend the approach of "trying to find out what kind of a celiac I am".  It's definitely best to avoid all gluten, and if you can't, consider GliadinX (a sponsor here) or other AN-PEP based enzyme brand.

[herminia]

  On 3/18/2023 at 4:49 AM, LP023 said:

Something else I’m absolutely blown away by is how many people are diagnosed with celiacs by TTG alone and never had a gene test. If you don’t carry the gene you can’t have celiacs. Gene test should be the first test done with a high TTG. It would prevent unnecessary biopsies and rule out false positives. 

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From herminia: My grandson, now 16, has always disliked items like butter biscuits and is no longer asking for burgers. My daughter had him tested for allergies, and he has various positives, gluten and lactose. I have celiac, my sister is lactose intolerant. I suspect gene tests are not necessarily required.

[trents]

  On 3/20/2023 at 12:54 AM, herminia said:

From herminia: My grandson, now 16, has always disliked items like butter biscuits and is no longer asking for burgers. My daughter had him tested for allergies, and he has various positives, gluten and lactose. I have celiac, my sister is lactose intolerant. I suspect gene tests are not necessarily required.

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Celiac disease is not an allergy and it cannot be diagnosed by allergy testing. Celiac disease is an autoimmune disorder. However, it is possible to have an allergy to gluten as it is to any protein substance.