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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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Text Ó 2006 Olive Kaiser www.Gluten Sensitivity.net
Text 2008 Olive Kaiser www.TheGlutenSyndrome.net
I am a patient, not
a medical expert, but share with others information
that I have personally found helpful.
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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.
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) Stool test, probably
more sensitive than blood.
(NOTE: ANY negative gluten related test is
inconclusive since gluten can break down into "pieces" for which there are
no tests.) Checks 2 antibodies
in 1 place (IGA) in the immune system.
Gliadin (AGA) and tissue transglutaminase (tTG). Positivity rate is
high if patient makes AGA or tTG.
62-69% positive-common symptoms (autoimmune,
fatigue, headache, digestive, etc.)
44% positive for non
digestive, non specific symptoms
28% for non
symptomatic (silent symptom) patients Also checks
intestinal function with a fat malabsorption test. This test is
for several months after a gluten free diet is established. Gluten panel $249
Gluten Panel with
Gene test and free milk test $369 This is a mail order
home test, no script needed.
If this test is negative, it is possible the patient makes
gluten related antibodies beside gliadin (AGA) or makes
antibodies in other systems beside IgA (ie, IgG, IgM or ?).
Therefore the Neuroimmunology Labs panels may pick up the particular
antibodies made by that patient as it checks more/other antibodies, in
more/other places in the
immune system, in blood. More on Enterolab
Stool test, probably more sensitive than blood. (NOTE: ANY negative gluten related test is inconclusive since gluten can break down into "pieces" for which there are no tests.)
Checks 2 antibodies in 1 place (IGA) in the immune system.
Gliadin (AGA) and tissue transglutaminase (tTG).
Positivity rate is high if patient makes AGA or tTG.
62-69% positive-common symptoms (autoimmune, fatigue, headache, digestive, etc.)
44% positive for non digestive, non specific symptoms
28% for non symptomatic (silent symptom) patients
Also checks intestinal function with a fat malabsorption test.
This test is valid for several months after a gluten free diet is established.
Gluten panel $249
Gluten Panel with Gene test and free milk test $369
This is a mail order home test, no script needed.
If this test is negative, it is possible the patient makes other gluten related antibodies beside gliadin (AGA) or makes antibodies in other systems beside IgA (ie, IgG, IgM or ?). Therefore the Neuroimmunology Labs panels may pick up the particular antibodies made by that patient as it checks more/other antibodies, in more/other places in the immune system, in blood. More on Enterolab
If this test is negative, then it is possible the patient makes wheat or gluten antibodies, or gluteomorphins, all which can be tested in blood. BUT they may make other gluten related antibodies for which there are no tests at this time. More on Neuroimmunology Labs
The also quite sensitive Enterolab stool test for gliadin and tTG might pick up a positive if the patient has antigliadin (AGA)-IgA or tTG-IgA antibodies in stool.
Try the diet
- Elimination Diet
Some practitioners recommend removing gluten from the diet for 7 days to a
month or longer. If there is no improvement reintroduce gluten and
determine if adverse reactions occur. There are advantages and
disadvantages to this approach. See explanations below.
In many cases it is helpful and inexpensive. However the elimination diet may not work for some folks with silent
disadvantage is that reintroducing gluten may be risky for some people.
An elimination diet resource/guide service is
More on Elimination
The villi biopsy (to diagnose specifically
the celiac subset only of the gluten syndrome) is NOT statistically the
most likely test to accurately diagnose the gluten syndrome since damage
may be in tissues other than the villi.
Some practitioners recommend removing gluten from the diet for 7 days to a month or longer. If there is no improvement reintroduce gluten and determine if adverse reactions occur. There are advantages and disadvantages to this approach. See explanations below. In many cases it is helpful and inexpensive. However the elimination diet may not work for some folks with silent symptoms. A disadvantage is that reintroducing gluten may be risky for some people. An elimination diet resource/guide service is www.foodintol.com More on Elimination Diets
The villi biopsy (to diagnose specifically the celiac subset only of the gluten syndrome) is NOT statistically the most likely test to accurately diagnose the gluten syndrome since damage may be in tissues other than the villi.
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)
There are many more known gluten related peptides**
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.
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
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:
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.
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:
Arguments in favor of formal tests vs. elimination diet
**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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