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Patient perspectives on Gluten Grain Intolerances

and Sensitivities including Celiac Disease,

and the risks of Gluten Challenges for Diagnostic Purposes

(Formerly GlutenSensitivity.net)

 

 

 

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

 

Some badly needed tests are still in the discussion and development stage.

 

                                                                          There is much more to learn.

 

Explosion 2: Coming! New Saliva Home Test!!                                                                                                       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, are based on early research, and 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 (research test)

Formerly Immunosciences Labs (New Saliva Home Test  and a progressive Complete Antibody Blood Panel*)

Try the diet - Elimination Diet

Villi Biopsy - What about it?

 

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General Explanations

The explanations below are repeated more than once in several cases.

When food digests, it is supposed to break down into very small pieces in the gut before it slips into the bloodstream.  If the gut wall does not hold together well and pieces of gluten and other foods slip into the bloodstream before they are broken down enough, ie, still too large, one or more of several different parts of the immune system may react by labeling the "pieces" with identifying flags or condemned signs, called antibodies.  Many tests look for these antibodies.

Gluten related antibodies - Early research (2002) indicates that when gluten (and 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 "pieces" called peptides, or reacts in a different place* in the immune system, the test will be false negative. * IgA, IgG, IgM, or a little understood system , IgD

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

Deamidated Gliadin - IgA, IgG, IgM (3 separate tests)

Gluteomorphins - IgA, IgG, IgM (3 separate tests)

Gluten - IgA, IgG, IgM (3 separate tests)

Wheat - IgA, IgG, IgM (3 separate tests)

tTG (tissue transglutaminase) - IgA, IgG, IgM

Some researchers believe elevated tTG is not present in all

subsets of the gluten syndrome (see Medical Diagrams)

for which no tests are developed. 

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 a gluten syndrome reaction that does NOT include elevated tTG, this test will be negative.  Therefore a positive is meaningful, but a negative test is inconclusive. 

Unfortunately, the tTG test is used widely as a single screener for celiac disease, one small subset of the gluten syndrome).  Persons with other serious gluten syndrome reactions that don't include elevated tTG will be negative on this screener and may erroneously be advised to eat gluten.

Overall low antibody counts - If antibody counts are unexpectedly low, a person may have experienced years 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. 

The patient may be IGA deficient, and does not make IGA antibodies at all.  In that case IgA test results are meaningless.i biopsy

Villi Biopsy - What about it? - Villi and skin damage were noticed first because they are accessible for examination.  Many specialists insist that villi damage is the gold standard diagnosis criteria for celiac disease which is though by some researchers to be a small subset of the gluten syndrome. 

However, other researchers believe that the villi or skin are only two of many locations that may be damaged by the gluten syndrome.    These researchers believe many people have brain or neurological damage, or organ or other tissue damage but do NOT have villi or skin damage.  Therefore they do not recommend a villi biopsy for gluten syndrome diagnosis.  (There may be other reasons to examine the digestive tract.) 

Instead these other researchers recommend a number of tests for gluten related antibodies, and various susceptible 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 villi biopsy.  See Neuroimmunology labs, the complete panel. 

Unfortunately, if the practitioner relies on the villi biopsy for gold standard diagnosis, he is apt to discount positive antibody blood work if the biopsy is negative.

Standard "celiac only" diagnostic procedure today has moved away from even testing for gliadin since often antigliadin antibodies are elevated but the villi biopsy is negative. tTG is used instead as a screener because it is more directly related to "villi damage".  This may hinder correct diagnosis of the gluten syndrome if in fact the patient has serious gluten related damage elsewhere in his body such as the brain or a vital organ, etc or if he has a subset of damage that does not include elevated tTG.

 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 also predispose the gluten syndrome.

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

This research test became available as a home test since 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, gluten, and wheat.  Tests for other peptides are not yet developed.

  • Reactions may occur in several systems, including IgA, IgG and IgM.  Dr. Vojdani tests most antibodies for IgA, IgG, and IgM.  Most labs do not test IgM at this time.

  • 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 underlie damage to the gut wall which allows gluten and food particles to pass undigested into the blood stream.  The immune system then reacts adversely.  IN SHORT, TOXINS AND TOXIC ENVIRONMENTAL EXPOSURES ARE THE MAIN UNDERLYING CAUSE.  (Dietrich Klinghardt, MD. believes electrosmog is a significant stressor also.)

  • 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 by cellular mimicry to tissues all over the body that may "look" even only a little like gluten.  This is serious as it may create autoimmunity in many many areas of the body.

  • Commercially processed gluten used in combination with other food chemicals can provoke allergic reactions.  (Newly published article in the European Journal of Inflammation. Full text available soon.)Elimination diets

More on the Elimination Diet - If a symptomatic person is negative for antibodies but there is suspicion that the patient is gluten reactive, an elimination diet often helps pinpoint the issue. 

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: Silent damage: May not  be immediately helpful for people with

silent symptoms.  The incomplete state of gluten testing today and variations between patients make it hard for patients with silent symptoms (silenced nerves?) to evaluate any tests including the elimination diet.

                     

How long is long enough? There is no pat answer. Each person is different.  Some people feel better in just a few days, others a few weeks, but some notice gradual improvement over months or rarely up to a couple of years.

 

Evaluating the results. The elimination diet method is based on subjective interpretation.  If the patient 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 strictness of the diet, which puts the child at greater statistical risk.  In the face of temptation the person may be more apt to cheat or second guess his body's earlier message.

 

Gluten challenge. If gluten is reintroduced as a challenge to the diet, it may cause damage and be uncomfortable.  It is not known how long gluten must be reintroduced before obvious symptoms appear for an individual patient.  Some patients have picked up a problem only from elevated antibodies in a retest 9 months after gluten was reintroduced.

 

Other food intolerances or additional health problems may mask or delay obvious improvement.  In an 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 on it's own often does not build lasting good health.  Toxins and stress are thought to be a major cause of gluten intolerance and many other problems. Tissues must be rebuilt with healthy nutrient dense food and stress and toxin reduction are vital today.

 

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. Some advanced cases are too late to reverse the damage (refractory sprue).  The diet only reduces further damage.

However, 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 may be wise to listen.  Unfortunately, in some cases the body may not immediately show symptoms upon reintroduction of gluten.  In some cases nerves may be silenced. (One patient picked up problems/damage on tests 9 months after reintroducing gluten without 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 immediately obvious, depending on the area of the body affected.  Some tissues affected by silent, hidden damage, particularly if they are areas without many nerves, or if the nerves themselves are silenced by the damage. 

Some people have experienced severe "black pit" depression or psychiatric symptoms when they RETURNED to a gluten free diet after seesawing on and off or after a gluten challenge. 

It is conjectured that reperfusion injury (injury related to return of normal blood flow) may account for this reaction. 

Another possibility is that the reaction may be related to withdrawal from gluteomorphins.  They have an opiate like effect on the brain.

In these cases, sticking to a very strict gluten free diet relieved the reaction symptoms eventually.  No one knows how much damage may be done by on/off gluten consumption, or how long the side effects may continue. A long term mortality study indicates that on/off gluten consumption by people who are gluten reactive produces a much much higher mortality rate (6:1) than those who are strict (.5:1).  It is considered best/safest to go strictly gluten free and if improvement is eventually noted consider it definitive. Do not second guess the results later.  If a gluten challenge (not recommended) results in an adverse reaction, expect that it may take longer to rebalance when the GF diet is reinstituted.

 

Arguments against formal tests vs. elimination diet:

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

  • No test panel is complete enough to be sure to pick up the particular gluten reaction for that patient. However, between Enterolab and Neuroimmunology Labs, there is probably a good chance of a positive result.

  • 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 needs to understand the limits of testing ahead of time.  A positive is meaningful.  A negative is always inconclusive since gluten can break down into pieces for which there are no tests. 

    Some patients may be so ill for so long that their immune systems may be too exhausted to produce elevated antibodies.

Arguments in favor of formal tests vs. elimination diet

  • Many patients skip testing and then decide they want to test later after they transition into the diet.  They may be tempted to do a gluten challenge which can cause serious damage if they are already completely gluten free.  It is best to foresee this possible change of heart and test BEFORE the gluten free diet is started.

  • A positive test helps a patient comply in the face of temptation.  They have written proof.

  • Family especially may be more united and supportive.

  • A positive test is proof for young children who later 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 repeatedly breaks the gluten free diet after years of compliance risks a severe reaction, immediately or eventually.  A positive test from their childhood may (or may not!) convince them to stay on the diet.  This is also a very good reason to build a child's body and heal the gut wall with healthy nutrient dense food and reduced toxic load before the teen years. 

    Is gluten a risky food for anyone today?

    Good question?  There is no definite answer.

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

    The gluten content was raised dramatically by hybridization.

    There are many processes to which wheat is subjected commercially. Research shows some of them to be toxic in combination with food chemicals to some people. 

    Food and environmental toxins, and toxic fats, are believed by some researchers to damage and weaken the gut wall and allow gluten pieces that are still too big to slip into the blood stream, triggering the gluten syndrome.

    Furthermore, some researchers believe electrosmog and emotional stress can trigger the gluten syndrome. 

    Enterolab reports very high incidences of the gluten syndrome, even though they check only 2 antibodies, but in stool.

    Dr. Thomas O'Bryan ran as a "complete as possible" 9-12 gluten antibody blood panel from Neuroimmunology Labs/Immunosciences on every patient he treated for 3 years.  The positivity rate was 77% in that sick population.  This does not account for many people with silent damage who had not yet sought help.

    Is gluten OK for anybody?  Conclusion? Good question!!

    What do you think???

    *  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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