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rutkowski517

Enterolab Results -- Gene Tests

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I tested my daughter because she has been having such allergy/allergic reaction issues and we have not been able to figure out what is going on with her. Her results show gluten seems to be okay as well as milk, where eggs and soy are higher. I do not understand exactly what the gene testing means though, should she still avoid gluten?

B) Gluten/Antigenic Food Sensitivity Stool/Gene Panel

Fecal Anti-gliadin IgA 8 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow

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Can you have her ped do a celiac panel including the total IGA? If she isn't producing enough IGA then that would throw off the IGA tests. It looks like she should definately avoid soy and eggs. Was she low or off gluten before the tests? That would cause a false negative on the celiac testing also.

She does have one of the main celiac associated genes along with the odd ball one that I carry.

You could try her on the gluten free diet after all testing is finished along with avoiding the items that you know she is making antibodies to. Then you could add back in the gluten when she is well to see if she tolerates. Keep in mind that not all gluten reactions are gut reactions. Some can be mood and learning issues or joint and muscle problems etc.

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Can you have her ped do a celiac panel including the total IGA? If she isn't producing enough IGA then that would throw off the IGA tests. It looks like she should definately avoid soy and eggs. Was she low or off gluten before the tests? That would cause a false negative on the celiac testing also.

The doc did do a bunch of allergy testing which showed nothing for gluten, but I do not think he did a celiac panel. I will have to ask about that. She has not been off of gluten ever, but lives with chronic constipation and allergy issues, rashes, sneezing, etc...I know she is very allergic to the outdoors, so that is part of it. She did show a level 4/4 for peanuts, but we have not "seen" a reaction, but we are now avoiding that. She also had 2/4 on chocolate, turkey, and a few other things she does eat, so I guess maybe elimating all of those will help.

Do the genes mean she "could be sensitive to gluten?"

Thanks for the info!

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She has one very risky gene [DQ2.5] for celiac disease, but it should not be taken as a diagnosis; about 13% of the population in the US has this.

As for the other results... who really knows? The tests that Enterolabs has developed seem reasonable on the surface, but they have not published their work. It's not been peer reviewed or duplicated. They are the sole backers of their tests.

They are banned in a number of states, and your insurance isn't going to pay for what they do. There are reasons for this.

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She has one very risky gene [DQ2.5] for celiac disease, but it should not be taken as a diagnosis; about 13% of the population in the US has this.

As for the other results... who really knows? The tests that Enterolabs has developed seem reasonable on the surface, but they have not published their work. It's not been peer reviewed or duplicated. They are the sole backers of their tests.

They are banned in a number of states, and your insurance isn't going to pay for what they do. There are reasons for this.

Thank you for that info, I did not realize this. So, she carries the gene, but it may never develop into anything? I have autoimmune thyroid and wonder about the gluten connection with myself and if it could transfer to her as well and since the blood tests were not revealing, I was looking for answers.

So, there is no great test for this besides biopsy, except for removing gluten?

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With one DQ2.5 I think her odds are somewhere around 8% of developing it in her lifetime. That number seems to vary a bit from study to study. Genes don't appear to be enough to cause it. Usually there's some trauma: an illness or injury, or even extreme stress can kick things off.

Actually, blood antibodies are generally much more sensitive and specific than biopsy. Though they don't always run anti-gliadin now, like in your Enterolabs test, because it's not specific to celiac disease. There are several other, very good tests though. You can just ask for a "Celiac Panel".

I would absolutely look into it for yourself. There's a big crossover between Hashi's and Celiac. There are even a couple studies showing thyroid improvement on Gluten Free for people who do not have celiac disease. I don't think the "why" part of it is understood yet.

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Yes, she is at a higher risk to develop celiac disease, based on genetics.

Yes, you are at a higher disk (some say 50%), based on autoimmune thyroid disease.

You should both have full-panel celiac panels run.

I have had blood work labs run (LabCorp) to test for vitamin deficiencies, genetics and am awaiting results. I also have an Enterolab kit waiting for testing, hopefully this weekend.

The genetic testing from Enterolab us by cheek swab and quite frankly I've never heard anything negative about their genetic testing. Many people question their stool tests re:

iga, food allergies, etc.; however, I hear the same questions regarding many mainstream tests preferred by insurers.

I've read quite a few patient experiences re: allergy testing and the most successful patients are ones who have had allergy tests from 3+ sources, and they concentrate on those things that pop up "high" on multiple tests.

I have read repeatedly that Enterolab test results are "validated" by patient experience so I would not discount it, but use it as a place to start.

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I'm not sure that Entero is quackery. The ideas behind the tests do seem to make sense. You find antibodies in the stool, it seems likely that your body is pissed off at something in there. But since this is all being immediately expelled from the body, do the antibodies really matter? Is there opportunity for a feedback loop to develop like in celiac disease? Nobody knows, and it doesn't seem like we're likely to find out, because they seem more interested in getting every customer than can than they are in publishing their results and having other organizations validate their methods.

As for the blood tests failing, I really think they should be quite reliable. Study after study shows how good they are. The trouble with taking anecdotal complaints against a test like this is that there's a selection bias. The only people who are going to speak up are the freak cases that the blood test didn't work for. You have a lab failure or mix-up, or just something very strange about the person taking the test and it doesn't work out. Well, those are the people you're going to hear from when you ask about the blood test. Not the 1,000 other people it worked fine for.

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The doc did do a bunch of allergy testing which showed nothing for gluten, but I do not think he did a celiac panel.

Do the genes mean she "could be sensitive to gluten?"

Thanks for the info!

Allergy testing will not show a "gluten allergy" as there is no such thing. It may show a wheat allergy, however--as some people are both allergic to wheat and have gluten intolerance/sensitivity.

It is entirely possible that her seasonal/environmental/food intolerances and allergies could resolve if gluten is causing the inflammatory response in her. Many people have relief from these types of allergies/intolerance. (I did--and I was in great distress pre--DX!)

I agree totally with Raven's suggestion above. Those food proteins with high antibodies should be avoided to see if she improves.

A celiac panel, run while your daughter is still consuming gluten may be helpful, but you must know that many of us test negative--when in fact, we have celiac disease. There are many reasons why this can occur, including being IgA deficient.

Yes, the genes your daughter has indicate a gluten sensitivity and one is considered "a main celiac gene". Despite what some think, Enterolab results are as reliable as most other labs. This website has featured various articles about Dr. Fine's work. For the record,my genetic test results were consistently the same from three labs-- done in various ways (stool, blood, saliva)--so I have no reason to doubt the results.

Some people have celiac and have a different genetic marker than the "only recognized" celiac genes of DQ2 and DQ8. Research is ongoing.

I know it seems confusing, but I think many of us on here agree..the most reliable diagnostic tool is...relief of symptoms on a gluten-free diet.

I wish you and your daughter well!

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I'm not sure that Entero is quackery. The ideas behind the tests do seem to make sense. You find antibodies in the stool, it seems likely that your body is pissed off at something in there. But since this is all being immediately expelled from the body, do the antibodies really matter? Is there opportunity for a feedback loop to develop like in celiac disease? Nobody knows, and it doesn't seem like we're likely to find out, because they seem more interested in getting every customer than can than they are in publishing their results and having other organizations validate their methods.

As for the blood tests failing, I really think they should be quite reliable. Study after study shows how good they are. The trouble with taking anecdotal complaints against a test like this is that there's a selection bias. The only people who are going to speak up are the freak cases that the blood test didn't work for. You have a lab failure or mix-up, or just something very strange about the person taking the test and it doesn't work out. Well, those are the people you're going to hear from when you ask about the blood test. Not the 1,000 other people it worked fine for.

WHOA!! I take great exception to your remarks here.

I do not think that those of us who tested negative on celiac blood tests are "FREAK CASES" or there is something "very strange" about the people taking the test and that is why they got a negative result.

Do you understand what IgA deficiency is?

Do you know how many people test falsely negative?

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I've got a very good idea of what IGA deficiency is, Irish. It means that your "A" type antibody response is abnormal, and that the IgA-anti-TtG test will be invalid. Fortunately this is not a "false negative" as a celiac panel should always include a total IgA check, which will flag this issue. And, in any case, only about 3% of celiac disease patients have low "IgA".

In a research setting, where the clinician actually knows what they are doing, and where they know there is accountability for their work, the sensitivity of ELISA IgA-TtG, TgG-TtG, and EMA are all upwards of 95%. In the "real" world the sensitivity of each of those is usually ~90% or even less depending on lab. This is part of why a celiac panel includes redundant tests. I think it would be a good idea to get retested at another lab if there was very strong reason to expect celiac disease, but negative blood work.

It's very easy to think of the cost of a false negative. Remember that a false positive has a cost too. Especially for a child.

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Josh,

You seem unbending on the fact that many people test negative for celiac on blood panels. You said this small percentile of people is somehow "freakish" or they have something strange going on" (your words). Furthermore, by using such phrases as "in the real world"...you suggest something I find rather offensive. And there is no need to be condescending in your tone to me. I am pretty bright--honest! :rolleyes:

I do not know what you mean by a "false positive"=how does that happen??!! :blink:

I do not know why you are set on negating the real experiences of many people on this site-- people who have suffered a great deal as a result of faulty testing results.

Those of us with celiac disease who have had negative or "borderline" blood test results and other difficulties with attaining a proper diagnosis (and unbelievably long illnesses and resultant autoimmune diseases) are trying to offer our experiences to people who come on here and ask legitimate questions.

It is not really your place to take issue with people's REAL experiences--and call them "anecdotal complaints", insinuating that they are "fictional" or insignificant. That is really not the nature of what this forum is about.

Most of us are quite well-versed on the stats that support celiac blood panel reliability. Many of us have done all the research. This does not mean that false negatives do not occur.

It is our concern for this child that has prompted us to try and answer this mother's questions as thoroughly as possible.

We agreed...she has a celiac gene. We offered that sometimes the blood panels are negative. We offered our own experiences with labs. That's what we do on here. So the person who asked the questions can weigh the answers and use what is helpful.

To say that our experiences--i.e. those that do not fit your "stats"-- are not valid is incredibly disrespectful.

My own doctor--a reputable GI and celiac- savvy doctor--says false negatives happen more commonly than is believed--which is why do many people fall into the "undiagnosed" category. Like me.

As for your "95% accuracy" rate? well, that is not impressive to those who fall into the other 5%. We are the ones who fell into the "undiagnosed" category and suffered inexplicable dire complications.

I do not know why this is so important to you--to be absolutely "right" about this-- but since you do not allow for this possibility, it is not really possible to discuss this topic with you any further, now is it?

I am afraid we will have to agree to disagree.

I hope the original poster got a satisfactory response to her question ---as it got lost in your attack on Enterolab's credibility.

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It's very easy to think of the cost of a false negative. Remember that a false positive has a cost too. Especially for a child.

False positives are almost unheard of. Many times when people are told the blood tests are a false positive it is because the endo was negative. The rate of false negatives for endos is high for a variety of reasons, not enough samples, screw ups in the lab, wrong area was biopsied, damage was patchy and the damaged area was missed or even because the doctor wants to see a Marsh III result before diagnosis. People can also be told the biopsy when positive is a false positive when the blood test is negative. Either way the best test is the diet.

I also don't agree with your insistance that the false negative rate for blood tests is only 5%. Neither does my GI who always advises those who do test negative but have symptoms suggestive of celiac to try the diet strictly.

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Josh,

You seem unbending on the fact that many people test negative for celiac on blood panels. You said this small percentile of people is somehow "freakish" or they have something strange going on" (your words). Furthermore, by using such phrases as "in the real world"...you suggest something I find rather offensive. And there is no need to be condescending in your tone to me. I am pretty bright--honest! :rolleyes:

I do not know what you mean by a "false positive"=how does that happen??!! :blink:

I do not know why you are set on negating the real experiences of many people on this site-- people who have suffered a great deal as a result of faulty testing results.

Those of us with celiac disease who have had negative or "borderline" blood test results and other difficulties with attaining a proper diagnosis (and unbelievably long illnesses and resultant autoimmune diseases) are trying to offer our experiences to people who come on here and ask legitimate questions.

It is not really your place to take issue with people's REAL experiences--and call them "anecdotal complaints", insinuating that they are "fictional" or insignificant. That is really not the nature of what this forum is about.

Most of us are quite well-versed on the stats that support celiac blood panel reliability. Many of us have done all the research. This does not mean that false negatives do not occur.

It is our concern for this child that has prompted us to try and answer this mother's questions as thoroughly as possible.

We agreed...she has a celiac gene. We offered that sometimes the blood panels are negative. We offered our own experiences with labs. That's what we do on here. So the person who asked the questions can weigh the answers and use what is helpful.

To say that our experiences--i.e. those that do not fit your "stats"-- are not valid is incredibly disrespectful.

My own doctor--a reputable GI and celiac- savvy doctor--says false negatives happen more commonly than is believed--which is why do many people fall into the "undiagnosed" category. Like me.

As for your "95% accuracy" rate? well, that is not impressive to those who fall into the other 5%. We are the ones who fell into the "undiagnosed" category and suffered inexplicable dire complications.

I do not know why this is so important to you--to be absolutely "right" about this-- but since you do not allow for this possibility, it is not really possible to discuss this topic with you any further, now is it?

I am afraid we will have to agree to disagree.

I hope the original poster got a satisfactory response to her question ---as it got lost in your attack on Enterolab's credibility.

I have to agree with this, Irish. I am not sure what Josh's motives are, but he seems to be focused on numbers and research and not real people's experiences. :(

I have said this before, but I will say it again.....when you are dealing with immunology (which is what serologic testing for Celiac is) there is a HUGE margin for the unexpected!! Many auto-immune diseases have a sero-negative immune response, which means that it will not show up on lab tests!! You can have full blown Lupus and be negative on blood tests!! Why would that be any different for Celiac?? It's NOT! You do not have to have a positive blood test, nor are you a freak of nature if your labs are normal and you do in fact have Celiac! It happens, trust me! I am a clinical laboratory scientist, I worked in an immunology lab for almost 10 years! I have seen it in real life, and many people are unfortunately living it. :(

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Raven, I agree with you that for many of the blood tests in use, false positives are extremely rare. So rare in fact that I suspect those cases are just beginning and haven't yet developed intestinal changes. That's not the "false positive" I'm referring to, but rather anyone who decides they were "positive" when truly they were not.

The consequences of having and not knowing are devastating. But there is a significant cost both socially and economically to eating gluten free. Doing this unnecessarily (or even necessarily) will strain your relationships and finances for the rest of your life.

Irish, I have little doubt at this point that you will decide to "take offense" with anyone who does not agree with your line of thinking.

Now, first, chill out. Second, go back and read the thread again. I was here giving honest --and I think good-- advice to someone who asked for it. You're the one picking a fight. You "took offense" and "exception" before you were even involved in the thread, and now you're trying to attack my arguments by attacking my character, making it look like I've set out to antagonize you.

If you would like to change my mind, or even just post an alternative viewpoint for discussion, then please make a well reasoned argument backed by dependable evidence.

Anecdotal evidence is your uncle telling you how dangerous the ocean is because he was bit by a shark when he was ten. Scientific evidence says that it's not very dangerous because only one out of every twelve million beach-goers gets bitten. One of these forms of evidence is considerably more valuable than the other.

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Josh,

I am sorry if you think I have "attacked you"--because that was not my intention-- and I do not believe my words are an attack of any kind.

I have participated on this board for many months and no one would ever characterize me as being one to "attack someone's character" . I would never do such a thing. I tried to offer information ABOUT the topic--which is what we do on here. Just because it does not agree with your statistics, does not mean it is "anecdotal" or "wrong".

I took exception to what you said about negative testing because saying "there is something very strange about the person" IS offensive to me. I tested negative, but I am a celiac nonetheless.

NOTE: I did not say YOU were offensive. I would never be that rude!

However, telling me to "chill out" :rolleyes: --is the kind of condescending attitude that is not appropriate for this forum. None of us speak to each other this way.

Your statistics may be valuable, but the reality is, many of us diagnosed celiacs do not fit in the usual diagnostic criteria. It's the truth and NOT merely "anecdotal."( I am not the only one who has told you this IN THIS THREAD.) And it is important that readers on this forum know that the standard method of testing is NOT absolute and that it is wise to get tested in various ways in an attempt to get to the bottom of their health problems.

I think there is nothing more I can say without fear of it being misinterpreted by you. I notice you seem to favor the "science" (and as a wife of a scientist, I do "get that") but that leaves no room for anomalies. Real life has anomalies.

I wish you well!

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I have to agree with this, Irish. I am not sure what Josh's motives are, but he seems to be focused on numbers and research and not real people's experiences. :(

I have said this before, but I will say it again.....when you are dealing with immunology (which is what serologic testing for Celiac is) there is a HUGE margin for the unexpected!! Many auto-immune diseases have a sero-negative immune response, which means that it will not show up on lab tests!! You can have full blown Lupus and be negative on blood tests!! Why would that be any different for Celiac?? It's NOT! You do not have to have a positive blood test, nor are you a freak of nature if your labs are normal and you do in fact have Celiac! It happens, trust me! I am a clinical laboratory scientist, I worked in an immunology lab for almost 10 years! I have seen it in real life, and many people are unfortunately living it. :(

Thanks for your thoughts and your REAL life EXPERIENCES. :) I appreciate it.

My own long battle to be diagnosed has taught me a great deal about "margins for error" and the medical community is woefully ignorant about celiac disease in general. (And I should add gluten intolerances and sensitivities because these conditions are very real health threats, too!) What "they know" about celiac disease/gluten intolerance is being revamped on a daily basis.

Ultimately, we all need to be our own best advocates to ensure proper diagnosis and care.

Thanks! Cheers, IH

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IrishHeart is one of the most caring, informed posters on this board who researches everything she states (if she does not annotate it as opinion). I personally find the attack against her offensive.

To the original poster, the traditional testing for celiac disease has always been the full celiac blood panel, followed by endoscopy with multiple biopsies (at least 6-8). I would definitely encourage you to pursue this line of testing , which as has been stated may well prove to come out negative. This does not mean that there is no problem with gluten; merely that the tests for celiac disease were not passed. Gluten intolerance exists outside of celiac disease, and many people who test negative on all gluten intolerance tests recover well on a gluten free diet. So if the tests prove negative I would definitely do a gluten free trial for 3-6 months.

Many people also have intolerances to other foods after developing an intolerance for gluten, and these intolerances will often show up on allergy testing. However, often they prove to be short-lived and once gluten is withdrawn and recovery takes place these intolerances often disappear. So do not despair. :)

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IrishHeart is one of the most caring, informed posters on this board who researches everything she states (if she does not annotate it as opinion). I personally find the attack against her offensive.

To the original poster, the traditional testing for celiac disease has always been the full celiac blood panel, followed by endoscopy with multiple biopsies (at least 6-8). I would definitely encourage you to pursue this line of testing , which as has been stated may well prove to come out negative. This does not mean that there is no problem with gluten; merely that the tests for celiac disease were not passed. Gluten intolerance exists outside of celiac disease, and many people who test negative on all gluten intolerance tests recover well on a gluten free diet. So if the tests prove negative I would definitely do a gluten free trial for 3-6 months.

Many people also have intolerances to other foods after developing an intolerance for gluten, and these intolerances will often show up on allergy testing. However, often they prove to be short-lived and once gluten is withdrawn and recovery takes place these intolerances often disappear. So do not despair. :)

Thank you, "shroom"...I wanted the MOM who posted the questions to know that she is right to pursue all avenues to help her wee one to recover. And if taking out gluten is the answer, despite what testing reveals, then that's all that matters. :)

People thrive quite well without gluten in their diets...and for those alarmists who say that taking it out of the diet "for no reason" will harm someone...well, I have not seen a single study that supports that claim. The healthiest people I know DO NOT CONSUME gluten grains at all. Their choice. They just feel better off it! My friend dumped all grains and has kept her MS symptoms at bay for 25 years--even running in the Boston Marathon! This was loooong before she and I even heard the word "gluten". I find it rather ironic that I would eventually be DXed with celiac. I should have followed her example years ago and perhaps avoided what happened to me. :huh:

Hang in there, MOM! Hope your daughter feels better soon. If there is anything else we can do to help, please ask. Best wishes, IH

As far as the question of the reliability of testing/diagnostics go, consider this information from the american celiac alliance.org

http://americanceliac.org/celiac-disease/

In summary:

"Diagnosis

What are the appropriate screening tests for celiac disease?

The tests of choice are antibody measurements in the blood, ideally performed before the patient has removed gluten from the diet. However, patients and physicians must remember that no screening test is perfect, and that the keys to confirming the diagnosis of CELIAC DISEASE remain a small intestinal biopsy combined with the patient’s subsequent clinical response to a gluten-free diet. Thus, a patient (especially a young child) with symptoms of CELIAC DISEASE should have a small bowel biopsy, even if the antibodies are not highly suggestive.

What are the different antibody tests available? Can there be errors in testing?

The blood tests can be divided into 2 different types of antibodies: those which are “anti-gluten”, and those that “anti-self”. The “anti-gluten” antibodies are the anti-gliadin IgG and IgA. Ig stands for “immunoglobulin” or “antibody”. The “anti-self” antibodies are anti-endomysial IgA and anti-tissue transglutaminase IgA. The tissue transglutaminase IgA antibody is often abbreviated as “tTG”. Each antibody test varies widely in its sensitivity and specificity for predicting whether the disease is present in any individual. It must be remembered that NO test in medicine is correct 100% of the time in each person!

There are also several conditions which may yield false negative antibody results. A false negative means that the patient actually has the disease, but the test result is negative. One of the conditions that may give a false negative result is Immunoglobulin A or IgA deficiency. If a patient has a low total IgA level, the antibodies may be falsely low. This is why I always recommend that a patient have a total IgA level drawn at the same time the antibody testing is done. Young children may not make some of the “anti-self” antibodies, as it takes a somewhat mature immune system to make them. So in a young child, antiendomysial antibody, or the TTG antibody, can have false negative results. An inexperienced lab can misread the anti-endomysial IgA test, which requires someone to read a slide through a special microscope. It is possible that a celiac patient could have a positive antibody test at one lab, and a negative test at another. This is because different labs may use different commercial test kits, which vary in their sensitivity and specificity. And lastly, a person has to be ingesting gluten at the time the antibodies are drawn. A gluten-free diet will make the antibody tests negative."

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There are lots of mentions out there that the false negatives for celiac tests are more like 50%. It says so in The Lancet in an article I read too, not just some obscure website.

Celiac.com also has an article out on that.

Now I have seen some new research that looked at the way they do endoscopies, and the places in the U.S. where they only look at one or two samples have maybe half as many diagnosed with celiac compared to those where they look at four samples.

This explains what happened to my daughter, they took only two samples and only looked an one of them and decided it was negative, despite of abnormal looking small intestine. She quit gluten anyway and got a diagnosis anyway. Dramatic improvement off gluten.

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