Unlike most "celiac disease" resources, this site focuses on the following:

a. Undiagnosed/celiac negative gluten grain reactivity, tests, and relevant topics. 

b. The gluten challenge for celiac disease diagnosis - The risks and reasons patients undertake this procedure.

"WAIT!, now I'm confused?"

"I thought that if a person can’t eat gluten grains and doesn't have IgE mediated "wheat allergies", then he/she is "gluten intolerant", also called celiac disease.  What are "non celiac" gluten grain reactivities ("The Gluten Syndrome")? How are they different, and how are they tested?"

Our response based on our experience:

Those are good questions and are difficult for doctors to explain at this time. Little research has been performed to provide scientifically proven answers. However, the new Medical Diagrams help explain these questions.

In "new" areas of medicine, when research is “patchy”, patients’ experiences may not always fit the researched pieces of medical knowledge. These conflicts reveal a need for further study including the development of appropriate tests.  This requires time and funds. 

Dissonance in the community

A misleading dissonance between patient experience and validated common scientific understanding is present at the moment in the gluten-intolerant/celiac community. Specialists traditionally test only for villi-damaged "celiac disease" when they look for the gluten syndrome/spectrum, but many negative celiac testers react just as poorly to gluten and respond very well,  even dramatically to the gluten-free diet.  Until recently little research addressed this puzzling area of "the gluten syndrome/spectrum" but recent developments shown in the Medical Diagrams are hopeful.

Practitioners handle nonceliac gluten syndrome/spectrum symptoms differently.

Some professionals consider that nonceliac gluten reactivity and celiac disease are equally dangerous manifestations of the same disease, based on early research and obvious trends.

Many professionals are cautious to recognize or utilize early or unvalidated research. Some specialists and celiac disease centers currently discount or do not address "diet responsive/nonceliac" symptoms.  They may advise a gluten-containing diet based on negative tests, (but they also acknowledge on the flip side of the coin, "Nobody NEEDS wheat".)

Finally, the average American doctor is still barely aware of the prevalence or nature of the gluten syndrome/spectrum or its best-known subset, "celiac disease" at all. 

Based on the above viewpoints, many "celiac negative" but "GF diet responsive" patients fall in a diagnostic “no man’s land”. They have no laboratory confirmation of a condition they anecdotally discover responds well to the gluten-free diet. In these cases, if the doctor has treated and/or ruled out other possibilities, some patients listen to their body's signals*, manage their diet accordingly, and continue to search for information. Others continue to consume gluten based on negative tests. Patients help each other when these “cracks” develop in the medical protocol. They share personal experiences which doctors and the support organizations they oversee may be professionally unprepared to address.

The above dynamic happened to our family (Su's story) and has happened to many others. We eventually were forced, almost too late, to rely on our common sense when the standard celiac diagnosis process failed us. Since then we've uncovered information we’d missed or misunderstood earlier. The Research Checklist topics we outlined on this page worked together like puzzle pieces or building blocks.  They did not answer all our questions but did help us make more sense of our situation.  We share what insights we have found so far and hope they assist you also.  We welcome contributions of relevant information or your personal experiences.  If you are a well-informed medical professional from any viewpoint your insights are welcome. (Note: Before investing effort in an article other than a personal experience it would be wise to contact us first to discuss your topic.)

*Unfortunately, recent theories suggested by some researchers, including Dr. Rodney Ford of New Zealand, indicate that in many cases nerves themselves are damaged to the extent that they are silenced and their function is hindered.  Therefore in many cases, the body may not warn the patient about the pain or discomfort that properly functioning nerves might provide.

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Our website purpose

We recognize a need to peacefully bridge communication gaps between several medical viewpoints and the gluten syndrome patient community during this exciting albeit frustrating phase for patients and professionals.

As medical communities strive in the midst of turmoil and pleas from our leaders to "speak with one voice", the patient community must learn and understand the challenges faced by our specialists. We must participate with intelligence, manage our health concerns together, and choose wisely for ourselves when professionals have inadequate criteria to advise us.

This website strives to facilitate peaceful communication and informed patient participation as follows:

a.  Each viewpoint is presented in a historical context.

b. This site provides a platform to examine "nonceliac"  gluten grain reactivities and how patients and their doctors cope with them. 

c.  We examine and question gluten challenges.

d. The reader is directed to further resources.

We are grateful for the information available today.  It is information our forbears lived and died not knowing.

Navigational tools

Summary statements are linked to more technical information.

Return links direct the reader to the beginning of a discussion on the same page.

Expand/Hide links, are indicated by this black and yellow arrow.  They are not underlined.  Click for more detail and click or click the Close or Hide link: at the end to close the discussion. 

Normal links are underlined or in a different shade or color. Use the "back" feature on the internet browser to return to www.theglutensyndrome.net  if the link is offsite.

How can a layperson find research?

Learn the various types of research articles, and how to find and evaluate them. 

A lay reader may access medical research articles free at www.pubmed.com.  Type "gluten intolerance" (or "celiac disease" or another food intolerance or condition)  and (name of the disease) in the search bar.  Examples:  CELIAC DISEASE AND DOWN'S SYNDROME  or GLUTEN AND HEADACHES. 

Full text - Sometimes PubMed posts the free full text of an article.  Other times a fee or a subscription to the publication is required. Try a library if you want the full text. 

An abstract is a short summary of the full article. 

The conclusion is found in the last few sentences of the abstract.

Links to online medical dictionaries to bookmark:

http://www.nlm.nih.gov/medlineplus/mplusdictionary.html

http://cancerweb.ncl.ac.uk/omd/

Networking and feedback guidelines:

• We need feedback from patients and all professional viewpoints, that focuses particularly on non celiac gluten grain intolerance, gluten challenge experiences,  psychiatric issues, and anything else relevant.

• Submissions will be screened before they are posted with an eye to accurate referencing and appropriate and understandable, peaceful presentation. 

.The basics

• We ask that personal testimonials be accurate and brief, but with enough relevant details for the reader to understand your experience.  It's OK to express how it feels to be undiagnosed.

• Professionals, when you submit your comments, please write out the words for your degree abbreviations as well as the abbreviations. We will post a list of the degree abbreviations and their equivalents.

Resources to learn The Gluten Syndrome and celiac disease

a.   The Gluten Grain Reactivity Circle Diagram - an overview.

b.   The Gluten Grain Reactivity Primer - simple reference manual

      Gluten grain reactivity & celiac disease (Technical medical articles)

c.   The Gluten Sensitivity Brochure - published by the Gluten Intolerance Group.

d.   The History Section -  VITAL perspective on gluten grain reactivity.

e.   Audio Stories to Help Us Understand and explain several medical processes in

      simple and entertaining format on the Testing page of this site.

f.    Animations of the celiac process and live videos of internal  procedures

      are at this website.

g.   NEW! May 2007  Medical Diagrams with audio and text explanation.

h.   NEW!  June 2007 Animations depicting the role of tight junctions and zonulin in intestinal wall cells are here.  This process is sometimes referred to as "leaky

      gut" and is thought to be involved in a number of adverse health conditions including allergies and intolerances.  Special thanks to Alba Therapeutics

i.    The Services and Vendors page - links to medical and support sites that specifically discuss the celiac disease subset of gluten grain intolerance and the few sites known to recognize nonceliac gluten grain sensitivities.

(*When a person stops eating wheat, barley, rye, and sometimes oats for more than a few days, and then reintroduces these grains for weeks or months for testing purposes, this is termed a “gluten challenge”.)

Patients who remove gluten from their diets and experience improved health before celiac tests are performed sometimes choose later to undergo a gluten challenge (they eat gluten again for a specified length of time) thinking to confirm that they have celiac disease.  Usually, these patients suppose gluten intolerance to be celiac disease.  They believe a celiac diagnosis will relieve social pressure and help them comply with the gluten-free diet. This is a .particularly relevant issue to parents of young children.  They fear the teen years when most young people underestimate the consequences of "cheating" in social situations. It is tempting for a patient or a child's parents to trade a few more weeks or even months of discomfort, which often was previously endured for years before gluten was removed, in order to "earn" a conclusive lifetime diagnosis. These patients or their parents have already proved to themselves that they cannot consume gluten grains, so they are usually very sure they will receive a celiac diagnosis if they only "suffer long enough."  These patients also see a precedent of gluten challenges used somewhat routinely in research settings, so they assume that the discomfort is usually only temporary and in the long run a minor issue. They are not aware of the prolonged, disturbing consequences that some patients suffer from gluten challenges nor do they realize the low statistical chance (1 in 56 or less) that their tests will be positive in spite of miserable symptoms during and possibly long after the challenge. Sadly, many of these patients who previously "knew" they could not eat gluten grains later second guess their bodies' clear distress messages if they receive negative test results.  Sometimes adverse effects may not appear immediately. The patients become confused and return to consumption of gluten grains, or they "cheat" frequently in both cases often ignoring their body's clear signals.  Unfortunately, sometimes it is now theorized that the nerves themselves may be "silenced" by damage so they don't get the body's normal distress signals.  In some of these cases, their bewildering test results may mislead them into further possibly irreparable damage.

.Reference3

To a patient educated only about celiac disease, the logic of a gluten challenge makes some sense on the surface.   Social pressure and emotional support are incredibly powerful influences, and the gluten-free diet is particularly at first a difficult lifelong commitment so a conclusive "gluten syndrome" diagnosis is very helpful for compliance and in social situations. However, when our daughter (a young nursing student) chose to try a gluten challenge for the above reasons we did not understand or take seriously enough the following vital information. Had we understood these points she would not have taken such an unnecessary risk.

1. Gluten challenges may carry as low as a 1 in 563 or less chance of positive celiac subset diagnosis even though the patient's history, symptoms, and genes, are suspicious.  He may already know from experience that he cannot tolerate gluten grains. REPEAT: Only one in 56 symptomatic patients are diagnosed with the celiac disease subset of the gluten grain syndrome.3

2. We mistakenly thought gluten intolerance was celiac disease. We did not understand that there may be other subtypes of gluten grain reactivity that may not be diagnosed by current validated celiac blood tests and biopsies.  See the Gluten Sensitivity Brochure

3. We did not understand that some researchers believe gluten grain damage may not always damage the intestinal villi but serious injury may occur in other areas.

4. We missed the concept that some researchers believe even celiac disease antibodies or villi damage might not show up in blood tests or biopsies until the disease is advanced.

5. We had never heard of the celiac and neuroimmune panels from the Immunosciences Laboratory that includes gluteomorphin, wheat, gluten, and IgM testing and tests of the nervous system's myelin sheath and the brain tissue.  (See the Gluten Grain Reactivity Primer page 11.  We also had never heard of the ALCAT sensitivity panels which also test for immune reaction to gluten AND gliadin.  We found that stool tests from Enterolab matched our experience, it was too late however to avoid Su's challenging reaction.

6. We did not know some researchers suspect other substances in gluten grains or many grains/starchy food/sugars, yeast infections, missing enzymes or fats, or even possibly the preparation methods of the grains may contribute to similar symptoms for some people.  These factors and their consequences are poorly studied.

.Most celiac specialists are reluctant

7. We had no idea that in certain cases gluten challenges are not just miserable. (The term used by patients is frequently "horrible!") Some challenges produce lingering psychiatric consequences that may last months after a gluten-grain-free diet is resumed or in some cases they do not resolve.

In our daughter's case, her serious depression symptoms did not abate for months after the challenge ended. Only when even weekly communion loaf was changed to gluten-free, in spite of negative standard celiac blood tests (albeit positive stool research tests) were obtained at the conclusion of the challenge.  In these common but confusing cases, these patients need the confidence to use common sense, and available knowledge, and listen to their bodies in spite of the testing.  But they should continue to look for other factors that may relate to their situation, and seek guidance from a well-informed practitioner whose first focus is healing the patient vs. diagnosing disease. See “personal experiences.”

.Cheating top

8. Most celiac specialists are reluctant to advise gluten challenges.1 They all advise that testing be done before beginning the gluten-free diet.

The purpose of a gluten challenge is to damage the body enough to measure gluten-induced antibodies in the blood and observe injured intestinal villi (biopsy).  Since many now believe villi-damaged "celiac disease" is only a small subset of the Gluten Syndrome, is this damage worth a 1 in 56 chance of a celiac subset diagnosis? Will the damage happen to the villi or somewhere else?  Will the damage inflicted by the challenge to possibly many areas of the body including the brain subsequent to the challenge ever reverse?  

9.  Gluten challenges are a severe form of "cheating". 

Mortality studies show that "cheating" raises the overall mortality rate much higher than completely ignoring the gluten-free diet.30 Cheating causes repeated gluten-induced damage such as reduction/return of blood flow injury (called ischemia-reperfusion injury) to various areas of the brain30.  This on/off effect of fluctuating blood flow to tissues is known to be injurious.  Furthermore, anecdotally many patients experience stronger reactions to gluten accidents once they are gluten-free.  A prolonged challenge, particularly if the patient has been gluten-free for a period of time, may risk a more intense reaction.  This is overwhelmingly understood in the gluten-free community.

This is a serious decision for each patient and their well-informed doctor to evaluate.  If a gluten challenge is undertaken, careful monitoring for signs of depression or other physical and psychiatric reactions, immediate or delayed, is only common sense.  In our daughter's case, the symptoms actually worsened after the gluten-free diet was resumed, (possibly due to Ischemia/reperfusion injury?).  More input is needed from patients regarding their gluten-challenge experiences.  See the Personal Experiences section.

The "Hide" link for this gluten challenge section is at the bottom of the next "Celiac specialist comments" and  "references" sections.

Celiac Specialist Comments on gluten challenges

Note:  These doctors' comments are all over 4 years old.  Professionals from various medical viewpoints are invited to comment on their current opinions of gluten challenges for celiac disease diagnosis purposes.  As more patients are tested, doctors' judgments may change with experience and as new information surfaces.

a.  Several comments by Dr. Cynthia Rudert MD, and Dr. Ken Fine, MD on the www.clanthompson.com site > Celiac Disease > Ask the Experts > Ask the Doctor > Tests and their results >Questions 17, 20, 23

.References

b.  Celiac Disease:  The Great Mimic  Robert Dahl, MD  http://www.csaceliacs.org/GreatMimic.php

c.   Quote by Dr. Kenneth Fine, MD,  www.enterolab.com >Frequently Asked Questions> 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?   http://www.enterolab.com/Who_Should_Be_Screened/#already

Here is the quote

"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...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 and then in the variable gluten-challenge condition only if necessary. "

One final note. Sometimes, people experience dramatic improvement in symptoms and feelings of well-being after beginning a gluten-free diet. If the improvement in health was dramatic following the removal of gluten from the diet, then this in and of itself is a positive diagnostic test (and perhaps the ultimate test). "  (Emphasis added, reprinted with permission.)

(Dr. Fine claims his test can be used for several months after a gluten-free diet is initiated since the antibodies tend to hang around in the intestine longer than in the blood.)

3.  Prevalence of Celiac Disease in At-Risk and Not-at-Risk Groups in the United States Archives of Internal Medicine, Feb 2003

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&li st_uids=12578508&dopt=Citation

Alessio Fasano, MD; Irene Berti, MD; Tania Gerarduzzi, MD; Tarcisio Not, MD; Richard B. Colletti, MD; Sandro Drago, MS; Yoram Elitsur, MD; Peter H. R. Green, MD; Stefano Guandalini, MD; Ivor D. Hill, MD; Michelle Pietzak, MD; Alessandro Ventura, MD; Mary Thorpe, MS; Debbie Kryszak, BS; Fabiola Fornaroli, MD; Steven S. Wasserman, Ph.D., Joseph A. Murray, MD, Karoly Horvath, MD, PhD 

.Prevalence of Celiac Return to 1 in 56 chance of diagnosis

30. “Mortality in Patients with Coeliac Disease and Their Relatives:

A Cohort Study,” Correo, Giovanni, M.D. et al The Lancet (Vol 358, 2001)

Ischemia-reperfusion injury is well-known in the medical field.  For examples of this check www.pubmed.gov for ischemia-reperfusion injury.  More references explaining this phenomenon are in process. 

Untreated Celiacs at Increased Risk for Cerebral Hypoperfusion

http://www.celiac.com/st_prod.html?p_prodid=963&p_catid=&sid=91hH9H

1G0HGoBK9-46105070406.42

Regional cerebral hypoperfusion in patients with celiac disease.

Addolorato G, Di Giuda D, De Rossi G, Valenza V, Domenicali M, Caputo F, Gasbarrini A, Capristo E, Gasbarrini G Institute of Internal Medicine, Catholic University, Rome, Italy. g.addolorato@rm.unicatt.it Am J Med. 2004 Mar 1;116(5):312-7

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&do

pt=Abstract&list_uids=14984816&itool=iconabstr&query_hl=1

Schizophrenic symptoms and SPECT abnormalities in a coeliac patient: regression after a gluten-free diet. De Santis A, Addolorato G, Romito A, Caputo S, Giordano A, Gambassi G, Taranto C, Manna R, Gasbarrini G. Department of Internal Medicine, Catholic University, Rome, Italy J Intern Med. 1997 Nov;242(5):421-3

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&do

pt=Abstract&list_uids=9408073&itool=iconabstr&query_hl=1

.Cheating

Gluten-related cerebral hypoperfusion and neurologic disorders in coeliac patients.

Leggio L, Abenavoli L, D'Angelo C, Di Giuda D, Gasbarrini G, Addolorato G. Aliment Pharmacol Ther. 2004 Oct 1;20(7):821-2; author reply 822. PMID: 15379843 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&do

pt=Abstract&list_uids=15379843&itool=iconnoabstr&query_hl=1