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Patient perspectives on Gluten Grain Intolerances

and Sensitivities including Celiac Disease,

and the risks of Gluten Challenges for Diagnostic Purposes

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A test panel is a collection of separate tests, designed to look for evidence of a particular disease or condition.  Each test in the panel looks for evidence in one way or one place in the body.  A panel may or may not include all the possible tests needed to be sure to find evidence of a condition due to limitations of cost, scientific knowledge, etc. 

There is no one complete fool proof test panel for the gluten syndrome.

Some tests are still in the research, acceptance or development stage.

 
Prepare to study this issue.  It is not simple.
 

Which tests today are most likely to find evidence of the gluten syndrome?

(Posted May 17, 2008)

These tests, both based on early research, are presented in alphabetical order.  They do not cover the same ground, so to speak.  If one test does not pick up the gluten syndrome, the other may (or may not if the patient reacts in a way that is not testable at this time).  An elimination diet may or may not be a valid choice as well, but first check the advantages and disadvantages of formal tests vs. elimination diet.

Both of these these tests and prices are found on the Lab Charts page in alphabetical order. This website/owner has no financial interest in these labs or any other product or service mentioned on this site.  This website is a personally funded public service.

 

www.Enterolab.com

Neuroimmunology Labs

  formerly Immunosciences Laboratories

Try the diet - Elimination Diet

Villi or Skin Biopsy - What about it?

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

General Explanations

When food digests, it is supposed to break down into very tiny pieces in the gut before it slips into the bloodstream.  If the gut wall does not hold together well and only partly broken down pieces slip through small cracks in the gut into the bloodstream, they are still too large, and one or several parts of the immune system may label the "pieces" with specific identifying flags, condemned signs, called antibodies.  Many tests look for these antibodies to prove the body is reactive to gluten or other foods.

Gluten related antibodies - Early research (2002) indicates that when gluten or the whole wheat kernel digests incompletely, it may break down into several known "pieces" or peptides.  However, most doctors are only aware of one piece, gliadin.  Most tests only look for antigliadin antibodies (AGA), in one place in the immune system (IGA).  If the patient reacts instead to other "piece(s)**", such as gluteomorphins, or other peptides, or reacts in a different place* in the immune system, the test will be false negative. * IgG, IgM or a little understood system , IgD

The only gluten related antibodies for which tests have been developed are:

Wheat

There are at least 6 more known gluten related peptides** for which there are no tests, including the whole gluten molecule itself. 

tTG test - tTG is a normal enzyme in the body that becomes elevated in SOME BUT NOT ALL gluten syndrome reactions according to some researchers.  (Aristo Vojdani, Immunosciences Laboratories, et al).  The Enterolab and Neuroimmunology Laboratories tests check tTG, but if the person has another gluten syndrome reaction that does NOT include elevated tTG, this test will be negative.  Therefore a positive test is meaningful, but a negative test is inconclusive.  Unfortunately, the tTG test is used widely as a screener for the gluten syndrome (actually for celiac disease, one small subset of the gluten syndrome).  Persons with other serious gluten syndrome reactions that don't elevate tTG will be negative for this screener and may erroneously be told to eat gluten.

Overall low antibody counts - If antibody counts are unexpectedly low, a person may have endured years of the effects of the gluten syndrome and/or other illness, and it is conjectured that the body may be simply too "tired" to make large amounts of the antibodies these tests measure.  Antibodies are made of protein and it is thought that if protein synthesis does not work well, antibody count may be low.  Or they may be IGA deficient, and do not make IGA antibodies at all.  In that case the test results are meaningless.Villi biopsy

Villi Biopsy - What about it? - Some researchers believe that the villi or skin are only two of many locations that may be damaged by the gluten syndrome.  Villi and skin damage were noticed first by medical professionals because they are accessible for examination.  Now some researchers believe many people have brain, neurological, organ or other tissue damage but NOT villi or skin damage.  Therefore they do not recommend a villi biopsy for diagnosis unless there are other reasons to examine the digestive tract.  Instead these researchers recommend a panel which tests of various susceptible tissues and organs etc., to check for damage in many areas of the body.  This approach is much more comprehensive and less expensive than a standard blood test and biopsy.  See Neuroimmunology Labs, the complete panel. 

Unfortunately, if a practitioner relies on villi or skin biopsy for gold standard gluten free diet diagnosis, he is apt to discount positive antibody blood work if the villi or skin biopsy is negative. "Celiac only" diagnostic procedures today may not even bother to test for antigliadin antibodies since often they are elevated but the villi biopsy is negative. Since this mindset is looks only for "villi damage" they ignore the elevated gliadin antibodies and test instead for elevated tTG, a more specific marker for villi damage.  This "villi only" focus may hinder correct diagnosis of the gluten syndrome if in fact the patient has no villi damage but serious gluten related damage elsewhere in his body such as the brain or a vital organ, etc. Enterolab

More info on Enterolab.com - This stool test checks 2 antibodies, (antigliadin AGA, and tTG, tissue transglutaminase),  and also includes an intestinal malabsorption test that checks overall FUNCTION of the gut. 

Here are the main premises reported by Dr. Ken Fine, the researcher/owner of Enterolab.com

  • Elevated antibodies may show up in stool before blood. 

  • HLA DQ 1 and 3, (genes) also predispose the gluten syndrome as well as HLA DQ 2 and 8.

    In some cases gut FUNCTION, that is how well it works overall, may be damaged, but the villi are not necessarily affected.  In many cases it may be the nerves in the gut that are injured or paralyzed, preventing normal peristalsis, (wave like motions that move food through the gut).  Therefore he tests gut function with a fat malabsorption test.

  • The gluten syndrome is very very prevalent today, in probably over 50% of the population.

This research test became available as a home test in 2000. Enterolab is an accredited lab. Preliminary research which backs the test is announced but not formally published.  Therefore it is not validated, peer reviewed or considered a "standard" test by the conventional medical profession.  However, public confidence in this test has risen significantly. Test results match people's experience most of the time.Neuroimmunology

More info on Neuroimmunology Labs, WI - These test panels were developed by Dr. Aristo Vojdani, Immunosciences Laboratories, Beverly Hills, CA.  Immunosciences Laboratories is a research lab.  Neuroimmunology Labs performs the commercial testing Dr. Vojdani  developed.  Dr. Vojdani reports the following findings:

  • There are several known gluten related antibodies. Patients may react to one and not another.  Dr. Vojdani tests for gluteomorphins, gliadin and wheat.  Tests for other peptides are not yet developed.

  • Reactions may occur in several systems, including IgG and IgM.  Dr. Vojdani tests most antibodies in IgA, IgG, and IgM systems.  No one else tests IgM at this time to the knowledge of this website.

  • There are a number of possible gluten related reactions that do not all include elevated tTG. 

  • HLA DQ 2 and 8 genes are not always part of these reactions.  Therefore he does not believe these genes are necessary for the gluten syndrome to develop. He did not consider the possibility of HLA DQ 1 and 3 in his conclusions.

  • Stress, toxins (chemical injury), and infections damage the gut wall which then allows gluten and food particles to pass incompletely digested into the blood stream.  The immune system then reacts adversely.  IN SHORT, TOXINS ARE THE MAIN UNDERLYING CAUSE.

  • Antibodies to gluten peptides can cross react with foods with a similar molecular structure (milk, egg, corn, yeast, soy, coffee, sesame, and chocolate).

  • Antibodies to gluten peptides may cross link (attach) to tissues all over the body whose proteins may "look" even only a little like gluten.  This is serious since the antibodies, which are "condemned signs", then attract natural killer cells in the bloodstream to attack wherever they are attached. This may instigate autoimmune injury in many areas of the body. Full text

  • Some commercially processed gluten is particularly dangerous.  Full text here Elimination diets

More on the Elimination Diet - If a symptomatic person runs both the above tests and both are negative but there is suspicion that the patient is gluten reactive, an elimination diet often helps pinpoint the issue.  Some people choose the elimination diet instead tests.

Advantages:  The elimination diet is inexpensive. 

                          

                           The elimination diet is often definitive.

 

The elimination diet works best when the person has a good support system among family and friends and if the person is personally motivated to permanently and strictly go gluten free.

 

Disadvantages: May not  be helpful for people with silent symptoms.

                     

                     The appropriate duration of and elimination diet is not known

                     Each person is different.

 

This method is based on subjective interpretation.  If the person notices improvement or an adverse reaction to reintroduction of gluten he/she cannot always prove this to others.  An unsupportive spouse or grandparent may not respect his conclusions or in the case of children, may not support the actual diet.  When tempted the person may be more apt to cheat or second guess his body's earlier message.

 

If gluten is reintroduced as a challenge to the diet, it may cause more damage or be very uncomfortable.  It is not known how long gluten must be reintroduced before symptoms appear for an individual patient.  Some persons have picked up reactions only through an elevated antibodies or biopsy 9 months or more after gluten was reintroduced.

 

Other food intolerances or additional health problems may mask improvement.  In this analogy, "if you carry half the garbage out and the kitchen still stinks, you don't bring the garbage back in. You carry the rest out".  In many and most cases, gluten intolerance is not the only problem and a gluten free diet alone often does not bring lasting good health.  Toxins and stress are believed by researchers to be a major cause of gluten intolerance and many other problems because beside other injuries, they damage the gut wall, which allows incompletely digested gluten and other food to slip into the blood stream. The reduction of toxins and stress and other strategies to heal the gut wall are usually just as necessary as going gluten free.  This may include changing the overall fat profile, probiotics, reduction of sugars, yeasts, heavy metals, plastics, chemicals, cleaners, additives and other treatments used today to attempt to heal the gut.

 

Since gluten testing today is still incomplete it is difficult for persons with possible silent symptoms to conclusively evaluate any tests including the elimination diet, particularly if the tests appear to be negative.   

How long should an elimination diet be used before evaluation? Opinions vary. One month is often recommended, but one month is not long enough for everyone.  Some patients only gradually find that symptoms abate over several months or even a up to couple of years.  Sometimes they have additional food intolerances or conditions that must be also addressed which prevent noticeable improvement. In some advanced cases (refractory sprue, often in the form of cancer) it is too late to reverse the damage with diet alone.  In this case the diet only reduces further damage.

For many patients an elimination diet can be very effective and inexpensive.  If the symptomatic patient has a good emotional support system among family and friends and is personally motivated to be gluten free permanently, this is the cheapest alternative.  But there are guidelines and pitfalls that must be considered.

If the patient improves on an elimination diet or notices adverse reactions when gluten is reintroduced, this as definitive as a formal test.  The patient must not second guess the message. (Maybe it's just in my head??)  If your body is cooperative enough to tell you there is a problem with gluten or another food, it is telling the truth.  Unfortunately, in some cases the body may not immediately or obviously react. (One patient picked up damage on tests 9 months after reintroducing gluten with no obvious symptoms.)

WARNING:  Once a gluten free diet is well established, if the patient truly is gluten reactive, experience shows that it is risky to return to a gluten diet or to see-saw on and off.  Reactions are often more severe after a gluten free diet is well established, BUT they may or may not be obvious, depending on the area of the body affected.  Two often obvious susceptible areas are the brain and nervous system, or the digestive system.  Other body areas may be just as severely affected by silent damage, particularly if they are areas without many nerves. 

Some people have experienced severe "black pit" depression or psychiatric symptoms when they RETURNED to a gluten free diet, or after seesawing on and off, or after a gluten challenge.  It is conjectured that ischemia/reperfusion injury (reduction or return of normal blood flow) may account for this reaction.  Another thought is that reactions may be related to withdrawal from gluteomorphins (they have an opiate like effect on the brain). A very strict gluten free diet alleviated the symptoms within weeks in several cases.  No one knows how much damage may be done by on/off gluten consumption, or how long the side effects may continue after a permanent strict gluten free is reestablished. A long term mortality study* indicates that on/off gluten consumption by people who are gluten reactive produces a much higher mortality rate than those who are strict.  It is considered best/safest to go strictly gluten free and if improvement is eventually noted consider it definitive without reintroducing gluten even for a short challenge. Do not second guess the results later.  If a challenge is performed and results in an adverse reaction, expect possible reactions that may take longer to rebalance when the GF diet is reestablished.

* Mortality in patients with coeliac disease and their relatives: a cohort study  Lancet, Vol 358, August 4, 2001  Giovanni Corrao, Gino Roberto Corazza, Vincenzo Bagnardi, Giovanni Brusco, Caroline Ciacci, Mario Cottone, Carla Sategna Guidetti, Paolo Usai, Pietro Casari, Maria Antonietta Pelli, Silvano Loperfido, Umberto Volta, Antonino, Calabro, Maria Certo, for the club del Tenue Study Group

 

Arguments against formal tests vs. elimination diet:

  • Tests are expensive and research tests are often paid out of pocket.

  • No test is complete enough to be sure to pick up the particular gluten reaction for that patient.

  • False negative tests are discouraging and may mislead patients or the patient's family and friends not to take the situation seriously.  If tests are negative, even if the patient goes gluten free, he/she may not strictly comply or the family may not help.  Everyone involved needs to understand and accept the limits of testing ahead of time.  A positive is meaningful.  A negative is inconclusive.  This is not well understood in the gluten reactive community particularly among medical practitioners since formal dagnostic criteria does not yet account for these issues.

Arguments in favor of formal tests vs. elimination diet

  • Many patients skip testing and then decide they want a test later as they transition into the diet.  They may be tempted to do a gluten challenge which can cause serious damage.

  • A positive test helps a patient comply in the face of temptation.  They have written proof.  Between Enterolab and Neuroimmunology Labs, there is probably a good but not guaranteed chance of a positive result for many persons.

  • Family especially may be more supportive.

  • A positive test if it can be obtained, is proof for pre teen children who as teens may question their diagnosis in the face of pizza and beer.  (Late teen and college years are high risk years for  development of mental illness.  A teen who breaks the gluten free diet after years of compliance may have a severe reaction of some sort, possibly neurologically, immediately or eventually.  A positive test from their childhood may (or may not!) convince them to stay on the diet.

    Is gluten a risky food for anyone today?

    There are opinions, but no definitive answer for that question.  The following is a personal observation of this website. 

    Is it significant  that our wheat was modified, essentially genetically in the early 1900's by a nuclear radiation process that is no longer in use today?* 

    Wheat was crossbred even hundreds of years ago and the gluten content is now dramatically higher due to conventional hybridization. 

    Wheat is subjected to many commercial processes today, some of which are shown in research to be toxic at least to some people. 

    Overall, our bodies contain many toxins and toxic fats that are known to hinder or interfere with appropriate digestion, particularly of a molecule as large and complicated as gluten. 

    Has the presence of too high, out of proportion amounts of processed damaged vegetable oils and transfats which are known now to be deadly, plus a lack of healthy saturated fats from unprocessed tropical oils, grassfed animals, and fish with their Omega 3 oils interfered with the integrity of the cell membrane (cell wall, or phospholipid bilayer) ???  this could seriously affect the function of the cell membrane and compromise the gut wall, the blood brain barrier and many other tissues.  This serious question has been raised by Mary Enig, PhD, a well recognized lipids researcher and others. this could predispose the entire population to leaky gut and subsequent food intolerances.

    Stress, an integral part of our society, plays a significant role in digestion. 

    Conclusion?

    Under these circumstances, at the minimum, reduction of stress and toxins from today's lifestyle, positive measures to protect the gut wall, and other strategies to "shift the immune system's reactivity level back to neutral" may be wise choices to prevent the gluten syndrome.  For many persons, it is too late and a lifetime gluten free diet is already needed. Science today cannot erase the immune system's "memory" for gluten once it is established.

    Mendel in the Kitchen, by Nina Federoff

**The Gluten Response is Directed Toward Multiple Gliadin and Glutenin Peptides - Willemijn Vader, Yvonne Kooy, Peter Van Veelen, Arnoud De Ru, Diana Harris, Willemien Benckhuijsen, Salvador Pena, Luisa Mearin, Jan Wouter Drijfhout, and Frits Koning Departments of Immunohematology and Blood Transfusion and Paediatrics, Leiden University Medical Centre, the Netherlands; and the Free University, Amsterdam, The Netherlands

 

 

 

 

 

 

 

 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

                          

 

 

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