New studies

[Hypo]

12 hours ago, Scott Adams said:

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.

I am aware of that. And I am avoiding all gluten. But it is possible that each person is reacting differently not only on the outside but inside too, in terms of how much is needed for an immune reaction. I am only talking here about effects of cross contamination (so tiny amounts), not eating gluten on purpose. I.e., maybe for some celiacs it is possible to eat in a non dedicated gluten free restaurant where there is a chace of cross contamination, and still not have any outside or inside reaction. I am a very careful celiac, because I am relatively new (3 years), but there are celiacs who I know who had it for a few decades and they eat out much more regularly (gluten free of course, but possibly CCd) and are still fine. Of course, we can't know if they will have consequences in the future, when they are 60 or older, but one has to live as well and not in fear. I also remember reading that you eat out regularly. I also said I am taking gliadin when eating out, which is like 10 times a year and checking my antibodies regularly. So my point about checking what kind of celiac I am is checking whether I am the kind that can have a meal outside once in a while, or the kind that needs to have absolutely non processed food ingredients cooked only in my home in a 1000% gluten free environment. Judging by the posts here, there are both types, and for now I am the first type. 

[Hypo]

18 hours ago, trents said:

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.

I get them done once a year through insurance, as part of "controling"celiac. And then I do it out of pocket after a longer trip where I have eaten out on more than one occassion. So that would be an extra 1 or 2 times a year. It costs around 55 dollars for total iga and ttg iga where I live in Europe. I think in the future I will just stick to once a year through insurance, but for now I am trying to see how I react to things with the testing available. I agree it is difficult to know what is really going on inside your body if you don't feel anything, so I am: being careful as much as I can, but try not to stress about it ("is the meat I bought at the butcher's contaminated??"), listen to my body and follow up regularly. And maybe we also differ on the inside, as I said, and I shouldn't feel so uncomfortable when I find myself eating out, thinking all the time omg what will happen to me now. Maybe nothing, really, even silently. I still have a big sweet tooth, for example, even though I know sugar is inflammatory and what not. So I was also saying that many of us are so obsessed about what a tiny amount of gluten can do to us, but have no problem being overweight, never exercise, etc, which might be a bigger silent killer than getting CCd. 

[Scott Adams]

10 hours ago, Hypo said:

But it is possible that each person is reacting differently not only on the outside but inside too, in terms of how much is needed for an immune reaction. I am only talking here about effects of cross contamination (so tiny amounts), not eating gluten on purpose. I.e., maybe for some celiacs it is possible to eat in a non dedicated gluten free restaurant where there is a chance of cross contamination, and still not have any outside or inside reaction.

This is possible, and some celiacs actually go into remission after years on a gluten-free diet, and if they start eating gluten again it can take some months or even years for the damage to return. I also eat in restaurants, and the point I was trying to make is that there now may be a safer way to do this using AN-PEP enzymes, so you may be able to mitigate some of the risks associated with small amounts of cross-contamination. Remember, since this is an autoimmune disease where tiny amounts of gluten can keep it going, and keep the damaging levels of inflammation higher, it's best to put a stop to this process in order stay healthy.

[I.M.Celiac]

On 3/16/2023 at 7:54 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. 

Um, someone hold my gluten-free, non-alcoholic beer.

I think you are trying to process your anger at your diagnosis. I totally understand. It is an intense change. There is no logic to it.

You are mortified with the diagnosis and went into a Google spiral. I was the same way!

I couldn't spell "Celiac" correctly. I thought there was a mix-up in the lab.

My main relief was my crippling migraines went away very quickly. I was shocked there was a connection. It seems to block fertility too. It's all so wild.

Osteoporosis, depending on your age, won't be "visible" for awhile. Heads up on your first bone scan! 

I tried to cross-reference NIH studies and pinpoint causes and meanwhile, a liar at a potluck sent me to the ER. (The ER doctors didn't believe Celiac was "real" in 2010. Nightmare.)  

The various studies contradict each other because doctors were taught Celiac patients died by 11 years of age for years.

MY GI barely believed I had it in 2010. It cost thousands of dollars to get diagnosed. You are so lucky to have health insurance for the test.

To complain about it on a Celiac forum and suggest we are misdiagnosed is bizarre. Do you head over to AA boards and say, "Maybe we can have a drink?"

Look into your family tree.  Any "pernicious anemia" deaths in the 1920's? "Stomach cancer", "digestive cancer", 3 or more kids die in an 1890's plague? That will be your highly-personal data analysis. I found SO many deaths of long-forgotten past generations in my family. You might too. 

Good luck!

 

[LP023]

On 3/19/2023 at 8:48 AM, trents said:

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.

I know 3 celiacs that’s have their levels checked every 3-6 months. 

[LP023]

On 3/20/2023 at 3:39 AM, Hypo said:

I am aware of that. And I am avoiding all gluten. But it is possible that each person is reacting differently not only on the outside but inside too, in terms of how much is needed for an immune reaction. I am only talking here about effects of cross contamination (so tiny amounts), not eating gluten on purpose. I.e., maybe for some celiacs it is possible to eat in a non dedicated gluten free restaurant where there is a chace of cross contamination, and still not have any outside or inside reaction. I am a very careful celiac, because I am relatively new (3 years), but there are celiacs who I know who had it for a few decades and they eat out much more regularly (gluten free of course, but possibly CCd) and are still fine. Of course, we can't know if they will have consequences in the future, when they are 60 or older, but one has to live as well and not in fear. I also remember reading that you eat out regularly. I also said I am taking gliadin when eating out, which is like 10 times a year and checking my antibodies regularly. So my point about checking what kind of celiac I am is checking whether I am the kind that can have a meal outside once in a while, or the kind that needs to have absolutely non processed food ingredients cooked only in my home in a 1000% gluten free environment. Judging by the posts here, there are both types, and for now I am the first type. 

My aunt was diagnosed by blood and biopsy in 2011. She had the proper diagnosis. She still eats out, isn’t extremely careful in her home. She avoids the obvious exposure. She has her TTG repeated every six months has had repeated scopes and she has healed her damage and blood is good. I know she has to be getting cross contaminated because she eats out at least 3-4 times a week. I’m convinced it doesn’t cause the same damage in everyone. 

[RMJ]

2 hours ago, LP023 said:

I’m convinced it doesn’t cause the same damage in everyone. 

I agree.  I used to be responsible for production of antibodies in rabbits.  The antibodies are used in medical diagnostic tests.  We’d give the exact same dose of an antigen to a number of highly inbred rabbits and they’d produce widely varying amounts of antibodies.

[Scott Adams]

18 hours ago, LP023 said:

My aunt was diagnosed by blood and biopsy in 2011. She had the proper diagnosis. She still eats out, isn’t extremely careful in her home. She avoids the obvious exposure. She has her TTG repeated every six months has had repeated scopes and she has healed her damage and blood is good. I know she has to be getting cross contaminated because she eats out at least 3-4 times a week. I’m convinced it doesn’t cause the same damage in everyone. 

I agree but the issue is that very few people get this type of follow up care, and most celiacs have little or no symptoms, so it's very rare to know for sure how such repeated gluten exposure will affect you. Overall it's better being safe than sorry, and even if your aunt's villi are not being damaged it does not mean that her exposure still won't cause her any health issues in the long run.

[LP023]

3 hours ago, Scott Adams said:

I agree but the issue is that very few people get this type of follow up care, and most celiacs have little or no symptoms, so it's very rare to know for sure how such repeated gluten exposure will affect you. Overall it's better being safe than sorry, and even if your aunt's villi are not being damaged it does not mean that her exposure still won't cause her any health issues in the long run.

Being safe causes a lot of joy to removed from your life. She is able to go out with her kids to restaurants, she doesn’t overly stress about bread crumbs on her bar, she lives her life. There is a point where quality of life is better than length. The chance that something could happen 20 years from now because of a bread crumb a day takes away from today. In her case she has healed her intestines, her vitamin levels are good and her levels are down. I think a lot of us are like this. When we get online it is from and gloom and don’t let a speck of flour touch your bar or you are a dead person. That has been the hardest part of a celiac diagnosis. I do realize some are extremely sensitive. But the advice online is overly dramatic and causes more stress on newly diagnosed than is needed. It’s been an eye opening experience. People act like a piece of bread on their bar can never be removed. I’ve seen post where people say it can’t be removed and you will just spread the gluten around on a surface. It can be removed if it can be removed from your hands with soap and water. 

[LP023]

1 minute ago, LP023 said:

Being safe causes a lot of joy to removed from your life. She is able to go out with her kids to restaurants, she doesn’t overly stress about bread crumbs on her bar, she lives her life. There is a point where quality of life is better than length. The chance that something could happen 20 years from now because of a bread crumb a day takes away from today. In her case she has healed her intestines, her vitamin levels are good and her levels are down. I think a lot of us are like this. When we get online it is from and gloom and don’t let a speck of flour touch your bar or you are a dead person. That has been the hardest part of a celiac diagnosis. I do realize some are extremely sensitive. But the advice online is overly dramatic and causes more stress on newly diagnosed than is needed. It’s been an eye opening experience. People act like a piece of bread on their bar can never be removed. I’ve seen post where people say it can’t be removed and you will just spread the gluten around on a surface. It can be removed if it can be removed from your hands with soap and water. 

I also believe many are diagnosed with celiac when they have something else. TTG can be false positive. Villous atrophy can be caused by many things. That was on my pathology report. My EMA was negative. 3A villous blunting on marsh. TTG was around 10 over the limit. The reason many are non responsive is because they don’t truly have celiac. 

[LP023]

19 hours ago, RMJ said:

I agree.  I used to be responsible for production of antibodies in rabbits.  The antibodies are used in medical diagnostic tests.  We’d give the exact same dose of an antigen to a number of highly inbred rabbits and they’d produce widely varying amounts of antibodies.

Someday we will know how this all works and the advice people are being given today will sound crazy. Something I’ve noticed since being diagnosed is people aren’t willing to consider that the advice we’re being given could be wrong. The lack of knowledge in the medical community is unbelievable and the advice from one doctor contradicts another. Most are getting their advice from other celiacs on the internet and that’s pretty much a losing battle because everyone has a different story. The more I read the more I believe a lot of people are misdiagnosed with celiac based on a false positive TTG and the villous atrophy is caused by other things. No one seems to want to acknowledge it. Crohns can cause it and does get better for a lot of people on a gluten free diet but they do not have celiac. 

[trents]

7 minutes ago, LP023 said:

Someday we will know how this all works and the advice people are being given today will sound crazy. Something I’ve noticed since being diagnosed is people aren’t willing to consider that the advice we’re being given could be wrong. The lack of knowledge in the medical community is unbelievable and the advice from one doctor contradicts another. Most are getting their advice from other celiacs on the internet and that’s pretty much a losing battle because everyone has a different story. The more I read the more I believe a lot of people are misdiagnosed with celiac based on a false positive TTG and the villous atrophy is caused by other things. No one seems to want to acknowledge it. Crohns can cause it and does get better for a lot of people on a gluten free diet but they do not have celiac. 

Why would Crohn's improve on a gluten free diet? Maybe they have both celiac disease and Crohn's? After all, autoimmune disorders are known to cluster.

[LP023]

55 minutes ago, trents said:

Why would Crohn's improve on a gluten free diet? Maybe they have both celiac disease and Crohn's? After all, autoimmune disorders are known to cluster.

Do the research on that. Crohns improves for a lot of people on a gluten free diet. Some people feel better with a vegetarian diet and some all meat. You can have crohns without celiac. My mom was misdiagnosed with crohns, uc and celiac by different drs. She had several scopes, biopsies and blood test. The gold standard diagnosis for all of them. After 12 years and 100 lbs she made her way to the Mayo Clinic where she was diagnosed with mast cell. She now takes a Zyrtec in the morning, a Claritin at night, a prescription and follows a diet for mast cell. She is doing well. I think the testing for celiacs needs to go back to the drawing board. When the pathology results come with a disclaimer saying consistent with celiac but should not be used as a diagnosis because (a list of other things was listed) can also cause villous blunting and the lab report says you shouldn’t rely on the TTG because other diseases cause a high TTG and EMA there is a problem. Too many people continue to have problems on a gluten free diet and cross contamination is always to blame. 

[LP023]

On 3/20/2023 at 3:39 AM, Hypo said:

I am aware of that. And I am avoiding all gluten. But it is possible that each person is reacting differently not only on the outside but inside too, in terms of how much is needed for an immune reaction. I am only talking here about effects of cross contamination (so tiny amounts), not eating gluten on purpose. I.e., maybe for some celiacs it is possible to eat in a non dedicated gluten free restaurant where there is a chace of cross contamination, and still not have any outside or inside reaction. I am a very careful celiac, because I am relatively new (3 years), but there are celiacs who I know who had it for a few decades and they eat out much more regularly (gluten free of course, but possibly CCd) and are still fine. Of course, we can't know if they will have consequences in the future, when they are 60 or older, but one has to live as well and not in fear. I also remember reading that you eat out regularly. I also said I am taking gliadin when eating out, which is like 10 times a year and checking my antibodies regularly. So my point about checking what kind of celiac I am is checking whether I am the kind that can have a meal outside once in a while, or the kind that needs to have absolutely non processed food ingredients cooked only in my home in a 1000% gluten free environment. Judging by the posts here, there are both types, and for now I am the first type. 

I’m like you. I’ve read the craziest things though. Sometimes we just get stomaches, gi issues, brain fog and tired like like everyone else. Every issue isn’t cross contamination. If someone scrubs a stainless steel pot twice and then cooks chicken in it they aren’t cross contaminated from that pot. Every spice isn’t cross contaminated at the factory. These companies will never be able to do anything right. Some common sense has to be used. Fear is awful and it seems like when someone isn’t as sensitive to it everyone gets offended? Like we should all be miserable. I don’t eat it but I live with 3 boys and my husband and I can’t let every single thing scare me to death. 

[Scott Adams]

2 hours ago, LP023 said:

I also believe many are diagnosed with celiac when they have something else. TTG can be false positive. Villous atrophy can be caused by many things. That was on my pathology report. My EMA was negative. 3A villous blunting on marsh. TTG was around 10 over the limit. The reason many are non responsive is because they don’t truly have celiac. 

A positive biopsy for celiac disease + a positive TTG test of 10 over the limit is almost certainly celiac disease...that is, unless you are in denial. 😗 The odds of having both and not having celiac disease are actually very small indeed...this is only for the IgA version, but:

Quote

tTG-IgA (tissue transglutaminase IgA) blood test for celiac disease - This test measures the levels of IgA antibodies to tissue transglutaminase, an enzyme that is involved in the immune response to gluten in those who have celiac disease. The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease.

 

[Russ H]

Yes tTG2 antibodies 10x the reference range is almost certainly coeliac. Add in stage 3 viillous atrophy and well...

EMA also detects tTG2 antibodies but is an old and relatively crude and insensitive test.

[LP023]

1 hour ago, Scott Adams said:

A positive biopsy for celiac disease + a positive TTG test of 10 over the limit is almost certainly celiac disease...that is, unless you are in denial. 😗 The odds of having both and not having celiac disease are actually very small indeed...this is only for the IgA version, but:

 

I’ve seen it with my mom. She has mast cell and is finally doing well with treatment for that. There are also several studies saying the chances of someone having celiacs with a negative EMA following a positive TTG are very small. I did have a negative EMA. I am gluten free. Treating myself as if I do have celiac so denial there. I do believe many are being misdiagnosed. On the my lab report for the TTG it said many other things could cause high levels. On the pathology report for the biopsy it said other things could cause the villous atrophy and gave a list so now that the scientific community acknowledges this maybe patients will also and not assume that they are accidentally getting glutened and look for other reasons for their illness and symptoms. I fortunately don’t have a lot of issues but for others here that is not the case.  

[Russ H]

9 minutes ago, LP023 said:

There are also several studies saying the chances of someone having celiacs with a negative EMA following a positive TTG are very small.

I would be interested to see these. Do you have the references?

[LP023]

10 minutes ago, Russ H said:

I would be interested to see these. Do you have the references?

This isn’t the ones I first read awhile back. But a quick google popped this up. https://pubmed.ncbi.nlm.nih.gov/14740501/

[LP023]

2 minutes ago, LP023 said:

This isn’t the ones I first read awhile back. But a quick google popped this up. https://pubmed.ncbi.nlm.nih.gov/14740501/

https://www.sciencedirect.com/science/article/abs/pii/S0022175920302040 

An EMA should always follow a positive TTG. Lab corp doesn’t do this but quest labs automatically ran an EMA. Quest put a note saying inconclusive since one was positive and one was negative. 

[Russ H]

Just now, LP023 said:

This isn’t the ones I first read awhile back. But a quick google popped this up. https://pubmed.ncbi.nlm.nih.gov/14740501/

Yes, but they didn't show the tTG2 antibody levels. The EMA test is a crude form of tTG2 antibody test. The study is basically saying that moderate tTG2 antibody levels are not always coeliac disease. You have 10x. That is not moderate.

[LP023]

8 minutes ago, Russ H said:

Yes, but they didn't show the tTG2 antibody levels. The EMA test is a crude form of tTG2 antibody test. The study is basically saying that moderate tTG2 antibody levels are not always coeliac disease. You have 10x. That is not moderate.

Not 10xs. The cutoff was 15 I think. Mine was 25.

[LP023]

1 hour ago, Russ H said:

Yes tTG2 antibodies 10x the reference range is almost certainly coeliac. Add in stage 3 viillous atrophy and well...

EMA also detects tTG2 antibodies but is an old and relatively crude and insensitive test.

It’s more accurate, more time consuming and more expensive. It was replaced by the TTG because it’s cheaper and faster. Coming from an old co worker from the lab. My levels weren’t 10 times just 10 over the limit. Mild villous blunting was on the pathology report. It didn’t give a level. My gi told me she thought 3A marsh score but it wasn’t given. 🤷🏻‍♀️ Either way I’m following the diet. The testing for it needs over hauled. It’s a crap storm. 

[LP023]

On 5/15/2023 at 7:13 PM, LP023 said:

Not 10xs. The cutoff was 15 I think. Mine was 25.

On 5/15/2023 at 7:04 PM, Russ H said:

Yes, but they didn't show the tTG2 antibody levels. The EMA test is a crude form of tTG2 antibody test. The study is basically saying that moderate tTG2 antibody levels are not always coeliac disease. You have 10x. That is not moderate.

 

[Russ H]

That is wrong. If you follow up reference 8, you will read:

Quote

Serum endomysial antibodies (EMA) were first reported as a biomarker of dermatitis herpetiformis and celiac disease by Chorzelski and coworkers in 1984. Identification of tissue transglutaminase (tTG) as the autoantigen to which EMA antibodies bind led to the development of tTG antibody screening tests, which are less labour intensive than immunofluorescent assays for EMA.

The EMA test just detects tTG2 antibodies but with a courser and higher threshold. This is why it is more specific but less sensitive. It is not more accurate - it has fewer false positives but more false negatives.

Further, coeliac antibodies - particularly anti-tTG2 - are produced by intestinal lymphocytes, not the endomysium. They do bind to the endomysium because it expresses tTG2. However, the test is old, crude and subjective.

Edited May 18, 2023 by Russ H