Celiac Disease Support Group
Celiac disease is an auto-immune disorder of the digestive system that occurs in genetically-predisposed individuals. It is characterised by damage or flattening to all or part of the villi lining the small intestine, which interferes with the absorption of nutrients. This damage is caused by eating anything with gluten (gliadin), a protein found in wheat, rye, and barley...
I just wanted to share a post on correctly diagnosing Gluten problems. I know many have been accurately diagnosed with blood tests, but honestly, if you look at all the medical sites devoted to Celiac/Gluten sensitivity, they will tell you that blood tests can prove inaccurate depending on the person and situation of their symptoms or family members of Celiacs with no symptoms. So here is where I go for other accurate testing without the biopsy or blood testing. Please, read this in addtion to your own research. There are other methods, Doctor's don't always have every answer (they're not God!), and just take charge of your own health! And if you are a family member of a Celiac, the one test you should have is the genetic marker test above all!
From Dr. Kenneth Fine, Entero Labs
How is Gluten Sensitivity Diagnosed?
In recent years, testing for gluten sensitivity and celiac sprue usually is initiated with blood tests for antibodies against gliadin, the toxic subfraction of wheat gluten, or for an antiendomysial antibody that is produced against an enzyme present in the intestine and elsewhere in the body called tissue transglutaminase. These tests have revolutionized testing for celiac sprue because they allow for detection of the syndrome before extensive irreparable damage to the intestine, bones, and other tissues has occurred. Up until recently it was thought that nearly all patients with clinically important gluten sensitivity had these antibodies detectable in blood. However, recent studies, including my own, have shown that this is not true. In the early phases of the reaction, or especially when the disease is of a more mild variety, antigliadin and antiendomysial/antitissue transglutaminase antibodies may be absent from blood. Knowing that the immune reaction to gluten and other foods takes place inside the intestinal tract, we began testing the hypothesis that these antibodies may be present in the intestinal tract in gluten sensitive individuals, even if they are absent from blood. Extensive research has revealed that this hypothesis is true, and has resulted in the development of new methods for detection of gluten sensitivity, celiac sprue, and other food sensitivities (U.S. and International patents pending). This test has shown to be 100% sensitive for picking up celiac sprue in those so affected. This test is being offered at an affordable price by EnteroLab.Top
Can I have gluten sensitivity if screening blood tests for celiac sprue are negative or indeterminate?
The answer to this question is definitively yes. Originally screening tests for gluten sensitivity/celiac sprue consisted of blood tests against the damaging protein in gluten called gliadin (antigliadin antibodies). However, with heightened awareness of the possibility of gluten sensitivity in family members of diagnosed celiacs, or in people with syndromes associated with celiac sprue, it has become clear that not all people suspected of being immunologically intolerant to gluten have positive blood tests. This is problematic because these individuals are told outright that they are not gluten intolerant based on negative blood tests. Many times patients themselves are able to deduce that it is wheat that causes them to feel ill or have intestinal symptoms, but when blood tests are negative they are diagnosed with irritable bowel syndrome or sometimes "wheat allergy". It is not surprising to me that blood tests in the early phase of gluten sensitivity are negative. This is because the immunologic reaction to gluten begins and occurs inside the intestinal tract and not in the blood per se. For this reason, I had an idea about a year ago that these antibodies should be more frequently detected in the stool of gluten sensitive individuals rather than in the blood. This turned out to be the case based on extensive analysis of more than 500 normal people or people with various medical syndromes (including bonafide celiacs, patients with microscopic colitis, a form of colitis genetically and clinically related to gluten sensitivity, and patients with chronic diarrhea of unknown origin). Based on this research and its importance, I have brought this new test to the public directly via the internet from www.EnteroLab.com This new stool test can detect antigliadin antibodies in stool whether a person has symptoms or not. It is ideal for children who do not have to be stuck with a needle. Samples can be mailed from your home without having to go to the hospital or a doctor's office. Furthermore, you can decide if you want to be tested and do not have to beg a doctor to test you for gluten sensitivity.
Thus, because the antibodies produced as the result of gluten sensitivity are mainly secreted into the intestine rather than the blood, analyzing stool turns up many more positive tests than blood tests. It is only when the immune reaction has been present for long periods of time and/or the process is far advanced that antibodies are produced in quantities sufficient to leak into the blood.Top
Why is a Stool Test a Logical Test for Gluten or Other Food Sensitivity?
The immune cells present in the intestinal tract comprise the largest mass of tissue in the body assigned the function of protecting against foreign invaders. These invaders are present in the form of proteins called antigens. Although the intestine's immune cells probably evolved originally to ward off infecting organisms, in fact, their most frequent exposure to foreign antigens comes from food. One of the first lines of defense against foreign antigens (food or infections) is the secretion of a special antibody called secretory IgA into the intestinal lumen (i.e., the hollow center of the intestine). Here, these antibodies bind the antigen by a sort of lock and key recognition mechanism, in an attempt to neutralize the antigen so that it cannot enter the body. Because these antibodies do not get reabsorbed after entering the intestinal tract, they travel all the way through the intestine where they can be recognized in the stool. This is the rationale for the new gluten and other food sensitivity testing methodology invented and offered by EnteroLab (U.S. and International patents pending)Top
Do I have to be eating gluten for a gluten antibody test to be positive?
Because production of antigliadin antibodies is under genetic control, your body continues to make these antibodies for an extended period after gluten is removed from the diet, albeit, in lesser quantities the longer gluten is removed from the diet. Research has shown that these antibodies continue to be produced at lower levels for months, even 1-2 years after gluten is removed from the diet. Stool tests can continue to detect these low levels of antigliadin antibody produced in the intestine over this 1-2 year period (and longer if there is still small amounts of gluten in the diet, even hidden gluten); tests for antigliadin antibody in the blood routinely become negative after 3-6 months on a gluten-free diet. Top
If I am already on a gluten-free diet, do I have to return to eating gluten to be accurately tested for gluten sensitivity using the stool test?
Although it has been stated that a person must be eating gluten to be able to detect antibodies to gliadin in blood, we have found that this is not true for our stool tests (and other researchers have found the same when sampling upper intestinal contents with tubes). Because the stool tests (but not blood tests) can find low levels of antigliadin antibody produced in the intestine, we actually recommend that you be tested on your current diet, that is, gluten-containing or gluten-free. The amount of antibody being produced at any given gluten intake will be more meaningful if it reflects your normal condition rather than an artificially created condition by reintroducing gluten (if you have been off of it for a time) or trying to eat gluten in excess. Furthermore, even though a person removes obvious sources of gluten from the diet, there continues to be the potential of hidden gluten in less obvious food or drug sources (such as food additives, medicines, lotions, etc.), or when eating outside the home. Thus, it is possible that the test still may turn up positive for this reason.
Our recommendation then is simply to eat what you are currently eating, or whatever you think is best for you right now. There is no need to introduce the food being test for in any amount, and especially not in large amounts which could make you ill. If you have been off gluten for short periods, the results will be very close to those if you never had removed gluten from the diet. For people who have been gluten-free for longer than 1-2 years, it is actually best to remain gluten-free for the stool test, and to also rely on the gene test to aid in the diagnosis (see next section).
Thus, it is better to test on the current diet before adding the unreliable variable of a one to two week gluten challenge. It varies in different people how they or their immune system will react to gluten, and how long it would be required to eat gluten to make tests positive (as they once may have been before starting the diet). There are no guarantees that a truly gluten sensitive person will have positive tests after a short 1-2 week gluten challenge anyway, even if they get symptoms from it.
Here are the potential scenarios of stool and gene test results if testing is performed on a low gluten or gluten-free diet (rather than doing a gluten challenge).
Scenario 1
Because the stool test is much more sensitive than the blood tests, and the antibody can be produced for years after removal of gluten from the diet, the stool test may well be positive despite being on a reduced or restricted gluten diet. The gene test (which we recommended as a complementary test to the stool testing, especially when someone has been off of gluten for long periods of time because the gene test is never affected by the diet) likely will support the positive results.
Scenario 2
The stool test is negative (because they have limited or stopped gluten for a long period like many years) but the gene test is positive. This data is useful because it tells you at least that antibody production to gluten has stopped on the gluten-free diet. And the positive gene test or potential improvement you may have experienced after beginning your gluten-free diet are supportive that you are gluten sensitive. If the gene test is negative, it is still remotely possible to be gluten sensitive.
Alternatively, if you choose to do a gluten challenge at the outset (again which we do not recommend) and the test is negative, it may be so because damage and antibody production has not yet been initiated. And you do not get the benefit of a comparison of what your antibody levels were when gluten was out of the diet. The comparison itself before and after gluten can be helpful, and is definitely more meaningful than testing after a short time on gluten after being gluten-free for an extended period.
Thus, I recommend testing in the stable gluten-free condition first then in the variable gluten-challenge condition only if necessary.
One final note. Sometimes people experience dramatic improvement of symptoms and feeling of well-being after beginning a gluten-free diet. If the improvement to health was dramatic following removal of gluten from the diet, then this in and of itself is a positive diagnostic test (and perhaps the ultimate test).Top
What role does genetic testing play in the diagnosis of gluten sensitivity?
Currently, tests are available to detect the genes that control the immune system's reaction to gluten. These genes are called human leukocyte antigens or HLA. There are several types of HLA genes within each person. It is a particular type called HLA-DQ that is most useful in the assessment of the probability that a person may be gluten sensitive. The reason gene testing assesses probability rather than disease itself is because some people have the genes for gluten sensitivity but have no detectable evidence of the immune reaction to gluten or have no symptoms. In such people, gluten sensitivity is still possible but the probability (or in other words the chances or the odds) is lower than in a person who may be having symptoms attributable to gluten or that has antibodies detected. HLA testing is most useful when there is diagnostic confusion about whether or not a person is gluten sensitive. Such confusion often stems from one of the following: atypical intestinal biopsy results, the presence of associated diseases (such as microscopic colitis) that may mask the expected improvement of symptoms when gluten is withdrawn from the diet, negative tests for gluten antibodies in the midst of suggestive symptoms or signs of gluten sensitivity or celiac sprue (see the paragraph below to understand the difference), or when there are no symptoms at all and the person or the doctor can hardly believe that gluten sensitivity is really present. Other situations that HLA testing is useful is when a person is already on a gluten-free diet, and for testing family members (particularly children) for the odds that they have or will develop gluten sensitivity.Top
From Dr. Kenneth Fine, Entero Labs
How is Gluten Sensitivity Diagnosed?
In recent years, testing for gluten sensitivity and celiac sprue usually is initiated with blood tests for antibodies against gliadin, the toxic subfraction of wheat gluten, or for an antiendomysial antibody that is produced against an enzyme present in the intestine and elsewhere in the body called tissue transglutaminase. These tests have revolutionized testing for celiac sprue because they allow for detection of the syndrome before extensive irreparable damage to the intestine, bones, and other tissues has occurred. Up until recently it was thought that nearly all patients with clinically important gluten sensitivity had these antibodies detectable in blood. However, recent studies, including my own, have shown that this is not true. In the early phases of the reaction, or especially when the disease is of a more mild variety, antigliadin and antiendomysial/antitissue transglutaminase antibodies may be absent from blood. Knowing that the immune reaction to gluten and other foods takes place inside the intestinal tract, we began testing the hypothesis that these antibodies may be present in the intestinal tract in gluten sensitive individuals, even if they are absent from blood. Extensive research has revealed that this hypothesis is true, and has resulted in the development of new methods for detection of gluten sensitivity, celiac sprue, and other food sensitivities (U.S. and International patents pending). This test has shown to be 100% sensitive for picking up celiac sprue in those so affected. This test is being offered at an affordable price by EnteroLab.Top
Can I have gluten sensitivity if screening blood tests for celiac sprue are negative or indeterminate?
The answer to this question is definitively yes. Originally screening tests for gluten sensitivity/celiac sprue consisted of blood tests against the damaging protein in gluten called gliadin (antigliadin antibodies). However, with heightened awareness of the possibility of gluten sensitivity in family members of diagnosed celiacs, or in people with syndromes associated with celiac sprue, it has become clear that not all people suspected of being immunologically intolerant to gluten have positive blood tests. This is problematic because these individuals are told outright that they are not gluten intolerant based on negative blood tests. Many times patients themselves are able to deduce that it is wheat that causes them to feel ill or have intestinal symptoms, but when blood tests are negative they are diagnosed with irritable bowel syndrome or sometimes "wheat allergy". It is not surprising to me that blood tests in the early phase of gluten sensitivity are negative. This is because the immunologic reaction to gluten begins and occurs inside the intestinal tract and not in the blood per se. For this reason, I had an idea about a year ago that these antibodies should be more frequently detected in the stool of gluten sensitive individuals rather than in the blood. This turned out to be the case based on extensive analysis of more than 500 normal people or people with various medical syndromes (including bonafide celiacs, patients with microscopic colitis, a form of colitis genetically and clinically related to gluten sensitivity, and patients with chronic diarrhea of unknown origin). Based on this research and its importance, I have brought this new test to the public directly via the internet from www.EnteroLab.com This new stool test can detect antigliadin antibodies in stool whether a person has symptoms or not. It is ideal for children who do not have to be stuck with a needle. Samples can be mailed from your home without having to go to the hospital or a doctor's office. Furthermore, you can decide if you want to be tested and do not have to beg a doctor to test you for gluten sensitivity.
Thus, because the antibodies produced as the result of gluten sensitivity are mainly secreted into the intestine rather than the blood, analyzing stool turns up many more positive tests than blood tests. It is only when the immune reaction has been present for long periods of time and/or the process is far advanced that antibodies are produced in quantities sufficient to leak into the blood.Top
Why is a Stool Test a Logical Test for Gluten or Other Food Sensitivity?
The immune cells present in the intestinal tract comprise the largest mass of tissue in the body assigned the function of protecting against foreign invaders. These invaders are present in the form of proteins called antigens. Although the intestine's immune cells probably evolved originally to ward off infecting organisms, in fact, their most frequent exposure to foreign antigens comes from food. One of the first lines of defense against foreign antigens (food or infections) is the secretion of a special antibody called secretory IgA into the intestinal lumen (i.e., the hollow center of the intestine). Here, these antibodies bind the antigen by a sort of lock and key recognition mechanism, in an attempt to neutralize the antigen so that it cannot enter the body. Because these antibodies do not get reabsorbed after entering the intestinal tract, they travel all the way through the intestine where they can be recognized in the stool. This is the rationale for the new gluten and other food sensitivity testing methodology invented and offered by EnteroLab (U.S. and International patents pending)Top
Do I have to be eating gluten for a gluten antibody test to be positive?
Because production of antigliadin antibodies is under genetic control, your body continues to make these antibodies for an extended period after gluten is removed from the diet, albeit, in lesser quantities the longer gluten is removed from the diet. Research has shown that these antibodies continue to be produced at lower levels for months, even 1-2 years after gluten is removed from the diet. Stool tests can continue to detect these low levels of antigliadin antibody produced in the intestine over this 1-2 year period (and longer if there is still small amounts of gluten in the diet, even hidden gluten); tests for antigliadin antibody in the blood routinely become negative after 3-6 months on a gluten-free diet. Top
If I am already on a gluten-free diet, do I have to return to eating gluten to be accurately tested for gluten sensitivity using the stool test?
Although it has been stated that a person must be eating gluten to be able to detect antibodies to gliadin in blood, we have found that this is not true for our stool tests (and other researchers have found the same when sampling upper intestinal contents with tubes). Because the stool tests (but not blood tests) can find low levels of antigliadin antibody produced in the intestine, we actually recommend that you be tested on your current diet, that is, gluten-containing or gluten-free. The amount of antibody being produced at any given gluten intake will be more meaningful if it reflects your normal condition rather than an artificially created condition by reintroducing gluten (if you have been off of it for a time) or trying to eat gluten in excess. Furthermore, even though a person removes obvious sources of gluten from the diet, there continues to be the potential of hidden gluten in less obvious food or drug sources (such as food additives, medicines, lotions, etc.), or when eating outside the home. Thus, it is possible that the test still may turn up positive for this reason.
Our recommendation then is simply to eat what you are currently eating, or whatever you think is best for you right now. There is no need to introduce the food being test for in any amount, and especially not in large amounts which could make you ill. If you have been off gluten for short periods, the results will be very close to those if you never had removed gluten from the diet. For people who have been gluten-free for longer than 1-2 years, it is actually best to remain gluten-free for the stool test, and to also rely on the gene test to aid in the diagnosis (see next section).
Thus, it is better to test on the current diet before adding the unreliable variable of a one to two week gluten challenge. It varies in different people how they or their immune system will react to gluten, and how long it would be required to eat gluten to make tests positive (as they once may have been before starting the diet). There are no guarantees that a truly gluten sensitive person will have positive tests after a short 1-2 week gluten challenge anyway, even if they get symptoms from it.
Here are the potential scenarios of stool and gene test results if testing is performed on a low gluten or gluten-free diet (rather than doing a gluten challenge).
Scenario 1
Because the stool test is much more sensitive than the blood tests, and the antibody can be produced for years after removal of gluten from the diet, the stool test may well be positive despite being on a reduced or restricted gluten diet. The gene test (which we recommended as a complementary test to the stool testing, especially when someone has been off of gluten for long periods of time because the gene test is never affected by the diet) likely will support the positive results.
Scenario 2
The stool test is negative (because they have limited or stopped gluten for a long period like many years) but the gene test is positive. This data is useful because it tells you at least that antibody production to gluten has stopped on the gluten-free diet. And the positive gene test or potential improvement you may have experienced after beginning your gluten-free diet are supportive that you are gluten sensitive. If the gene test is negative, it is still remotely possible to be gluten sensitive.
Alternatively, if you choose to do a gluten challenge at the outset (again which we do not recommend) and the test is negative, it may be so because damage and antibody production has not yet been initiated. And you do not get the benefit of a comparison of what your antibody levels were when gluten was out of the diet. The comparison itself before and after gluten can be helpful, and is definitely more meaningful than testing after a short time on gluten after being gluten-free for an extended period.
Thus, I recommend testing in the stable gluten-free condition first then in the variable gluten-challenge condition only if necessary.
One final note. Sometimes people experience dramatic improvement of symptoms and feeling of well-being after beginning a gluten-free diet. If the improvement to health was dramatic following removal of gluten from the diet, then this in and of itself is a positive diagnostic test (and perhaps the ultimate test).Top
What role does genetic testing play in the diagnosis of gluten sensitivity?
Currently, tests are available to detect the genes that control the immune system's reaction to gluten. These genes are called human leukocyte antigens or HLA. There are several types of HLA genes within each person. It is a particular type called HLA-DQ that is most useful in the assessment of the probability that a person may be gluten sensitive. The reason gene testing assesses probability rather than disease itself is because some people have the genes for gluten sensitivity but have no detectable evidence of the immune reaction to gluten or have no symptoms. In such people, gluten sensitivity is still possible but the probability (or in other words the chances or the odds) is lower than in a person who may be having symptoms attributable to gluten or that has antibodies detected. HLA testing is most useful when there is diagnostic confusion about whether or not a person is gluten sensitive. Such confusion often stems from one of the following: atypical intestinal biopsy results, the presence of associated diseases (such as microscopic colitis) that may mask the expected improvement of symptoms when gluten is withdrawn from the diet, negative tests for gluten antibodies in the midst of suggestive symptoms or signs of gluten sensitivity or celiac sprue (see the paragraph below to understand the difference), or when there are no symptoms at all and the person or the doctor can hardly believe that gluten sensitivity is really present. Other situations that HLA testing is useful is when a person is already on a gluten-free diet, and for testing family members (particularly children) for the odds that they have or will develop gluten sensitivity.Top
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I have been here before, a long long time ago and now I am back.Forgive me for not just saying what I want to say,even under a triple dose of antidepressants it is still raw and seeping and I am hesitant at revealing it as at least under the bandages around my heart I don,t have to look at how raw and wounded.My child was cleaved from my heart by his own actions. my child of ten,turning eleven...
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
i recently had the genetic testing.
Mine was diagnosed as a result of an endoscopy (after I had given blood for the colonoscopy).
Actually, the biopsies are considered the "gold standard" among the majority of mainstream doctors. If you were diagnosed by biopsy, you can be sure that you are in fact Celiac. If you are wanting more testing for confirmation, I would recommend the cheek swab genetic tests available at Entero Labs. Genetic markers are yours no matter what any other testing shows! Or symptoms for that matter! Blood tests are just plain iffy in my experience with hearing others stories.
As for going gluten free even when you don't have the "typical" symptoms, it's best to stay well now and not keep eating gluten and get more sick, with more unpleasant symptoms later. Each person is very different in how their bodies react to gluten - just know that if there is damage shown by your testing, it will cause bigger problems later unless you go completely gluten free!
Good luck! Gluten free can be the best thing you've ever done for yourself!
It seems that it is an inflamation of the upper part of the small intestine, and will probably heal being gluten free. Especially if you maybe look into L-glutamine as a supplement. Several doctors recommend that to help heal the sm. intestine. Also, vitamin D is supposed to strengthen the bowel. I always include a good probiotic to the mix to help repopulate the good bacteria in the gut we need for good health. Anything that helps heal the intestine contributes to good immune system support, and that's what we all need with gluten problems! It's an autoimmune problem, and we need strong immune systems! Hope this helps!
The need for further testing "to confirm" a positive finding of CD really isn't necessary in most cases. People seek other testing when they feel sure they have CD and their doctor isn't doing the right tests, or enough tests to confirm or deny. That's why the biopsy or scope is usually the final answer. But when doing the scopes/biopsies, they only look at the upper portion of the small intestine. There is 20 feet of small intestine "divided" into 3 sections! Your damage might not have been in the tiny section they looked at or snipped off, but if it showed in a blood test, you're still Celiac!
There are also many, who despite a lot of inconclusive testing, still have great improvement of symptoms when going gluten free. If you feel that much better off of gluten, and feel bad on it, do what your body says! Who needs testing in the end if you are well not eating gluten!
As for one final type of testing that you can't deny - it's genetic markers. Since Celiac/gluten intolerance is an inherited disease, there are markers for it regardless of any symptoms or bowel/blood testing. There are two gene markers for Celiac and two for gluten intolerance. Even when someone has just one of the markers, they will feel much better off of gluten, and can avoid future health issues by going gluten free before it becomes serious to their health!
I recommend going to www.enterolab.com and reading the whole section of testing/diagnosis information. That's where I got the above info. It answers lots of questions that we've discussed here. Bottom line - if a doctor has diagnosed you with gluten intolerance or Celiac Disease, from all or just one of the above methods of testing, including stool testing, you have this problem. Going completely gluten free will be your only salvation.
And it can be a wonderful thing! It's what we do with our attitude about it that will make the most difference! Be thankful we can control it and have great things to eat and be healthy in spite of, or hate and deny it and only be miserable. The alternative is terrible health issues and potentially death!
Sorry for the long response on this one! I really work hard in my coaching to help people embrace a GF life with hope and joy! I'd give up all grain products if it meant I can wake up alive and well each day and have a one more chance with life! I wish each of you hope and joy as you walk this path! It's good we have each other as well!
Blessings, Majetta
U are truly wonderful with your great info!
However, us older folks can't read more than about three sentences (especially when flared up with fibro) in one paragraph.
Just a few more spaces, please, please, please.
Thank you, sweetie!
I had blood test which came up negative. So you're right- tests aren't always accurate. If you are adhering to a gluten-free diet (which I had been), then the antibodies that the blood tests look for won't be present- your body produces them when gluten is present.
To my knowledge, a doctor CAN diagnose Celiac Disease from the successful results of a gluten-free diet, so it's important for insurance reasons to get a diagnosis from a doctor if you get results from enterolab.
Celiac Disease officially is the diagnosis given when the villi in the small intestine show atrophy. (or other specific visible damage)
If one has antibodies present from blood/stool tests but no atrophy, they will only say it's gluten intolerance or sensitivity.
They can't call it Celiac without the atrophy/damage, according to the medical sites I've researched. That's why I believe Dr. Fine at Entero won't come right out and say they give the Celiac diagnosis - he's not looking at evidence of villous atrophy because he doesn't do the scopes/biopsies.
His tests show only the antibodies for gluten problems, and genetic markers, which can show a definite Celiac probablity or gluten sensitivity with the right gene combination.
In the end, as he states and I quote below, if you have a gluten problem, whether or not you are just intolerant/sensitive or full blown Celiac, the treatment is the same.
A gluten free diet for life to avoid the serious health issues and diseases associated with gluten problems and Celiac.
In my opinion, which I state humbly as just that - an opinion - it doesn't matter which name you give it, just master the diet and lifestyle and stay well!
The following is from www.enterolab.com:
Do my positive results mean I have celiac sprue or that I need an intestinal biopsy?
he immune reaction to gluten is gluten sensitivity. Testing for the presence of an antibody produced against gluten is the diagnostic hallmark of gluten sensitivity (for years in the blood, and now more sensitively detected in stool with our testing).
Although the immune reaction to gluten, i.e., gluten sensitivity, is the cause of the villous atrophy of celiac sprue, having these antibodies in stool, or even malabsorption, does not necessarily mean you will have detectable villous atrophy in an intestinal biopsy.
But why does it matter, since it is known that a person can have every last complication from gluten sensitivity and never have villous atrophy? In other words, one can have gluten sensitivity damaging the intestine on a sub-microscopic level destroying function, or damaging other organs/tissues without having celiac sprue.
Thus, there is no reason to expose yourself to the risks, invasive nature, and expense of an intestinal biopsy. This idea is not new. Some have said this for years with respect to positive antiendomysial antibodies.
Now we extend this ideology to our stool testing; if you have the immune reaction, and especially if you have detectable malabsorption, symptoms, and/or immune disease, what is there to wait for to go gluten-free? And if you have none of these consequences, why wait for them to appear? Be thankful you do not, and go gluten-free.
I don't think your insurance company will refuse to fix other issues just because you don't have the "Celiac" name. If your sick and can be fixed, they will cover it. If yours covers testing, they'll do it.
You can still get testing without insurance approval, and pay out of pocket. The insurance issue is a non-issue in this case. Either you have good coverage to begin with that covers testing for this disease, or you don't and you have to pay extra for testing.
As for dietitians, most won't pay for their services, while some plans will. Just find out for sure by whatever method gives a definitive answer and then follow the diet!