How is the term "gluten grain intolerances" used differently from "gluten intolerance", and "celiac disease" or "gluten grain sensitivities" on this site?

Most celiac disease resources use the terms "gluten intolerance" and "celiac disease" interchangeably to refer to  biopsy diagnosed celiac disease.   Many patients use these terms more loosely.  They may mean celiac disease or  similar negative testing conditions.

In most literature villi damaged "Celiac disease" and "gluten intolerance" are used interchangeably. On this website we distinguish between "gluten grain sensitivities" and "villi damaged celiac/gluten intolerance" to avoid misdirection.  "Gluten grain sensitivities" are similar, unstudied conditions that may or may not be celiac disease.  In some cases, the sensitivities may be to something else in the same grains wheat, barley, rye and possibly oats, or to inappropriate starches,  fats,  missing enzymes or  improper grain preparation methods.  Since these hypotheses are unresearched, and removal of gluten grains brings relief in many cases, (sometimes in addition to other treatments) then regardless of whether gluten is  the culprit in every case, we label these  non celiac reactions  "gluten grain sensitivities".

The term "gluten grain sensitivities" as we define it on this website is an  umbrella including all the varied unhealthy reactions to  the gluten grains wheat, barley, rye and possibly oats. This includes IgE antibody mediated allergies.

"Gluten grain sensitivities is a cumbersome mouthful,but since most labels are already associated with diagnosable villi damaged celiac disease, we have chosen "gluten grain sensitivities" to  take the focus off "gluten" per se and "villi damge only" per se.  Eventually research may clarify these terms.

Hide: How is the term "gluten grain intolerances" used on this site?

Answer: 

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

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.
 

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

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 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.

• 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.

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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 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 non celiac gluten grain sensitivities.

Hide:  Gluten Grain Reactivity and celiac disease

(*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 biopsy.  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 biopsy until the disease is advanced.

5. We had never heard of the celiac and neuroimmune panels from 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, too late however to avoid Su's challenge 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 confidence to use common sense, 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" section.

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 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). "  (Emphasis added, reprinted with permission.)

(Dr. Fine's 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, PhD, 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 phenomena 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
 

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Hide Gluten challenges, the motivators and the risks

B. Understand the medical research and validation process.

Learn the different types of research studies and articles and the significance of each type for informed evaluation of their results.
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Understand the medical research validation process, its strengths and and its limitations.

The research process
.Medical Research
1.   Identify a need or reason for the study. Often it is a result of mounting anecdotal evidence.

2.   Design the study in a non biased way using placebos, blind, double blind and other methods.

3.   Obtain funds, find a researcher to do the work, and identify and recruit subjects to be studied.

4.   Prepare a physical work location or manner of conducting the work..

5.   Perform the experiment and/or collect the facts.

6.  Provide preliminary reports if appropriate, to alert professionals of possible changes ahead.

6.  Conclude - Analyze and interpret data and form conclusions, which may vary from preliminary reports.

7.   Report - Prepare a report detailing the all of the above.

8.   Publish - Submit the report for publishing, (many reports are never published)

9.   Review – Other professionals analyze and publicly comment on the report in a peer review process.

10. Duplicate – If research is repeated often several times, with convincingly similar results it is on the way to accepted validation. This is an important step.


Hindrances to credible research conclusions

1.  Poor design or sloppy execution of the study.

2.  Small study size.

3.  Inaccurate foundational assumptions, or interpretive paradigms.

4.  Funding sources or conflicts of interest may influence raw data interpretation. Check who funded the study.

Hide "  Understand the medical research and validation process"

C. Learn gluten grain intolerance and also celiac disease.  Listen to "Stories to Help Us Understand" on the Testing page of this site.

Understand that there are several medical viewpoints on the gluten syndrome and examine their differences. The website compares various perspectives, www.enterolab.com, www.drgluten.com, www.immunoscienceslab.com, The Services and Vendors page has many links to excellent websites discussing specifically the "celiac subset" of the gluten syndrome/spectrum.

Hide:  Learn gluten grain intolerance and also celiac disease

For a discussion of "Ruling out other diseases" see www.clanthompson.com > celiac disease > Ask the experts > Ask the doctor > Ruling out other diseases

Hide: Check other conditions, intolerances, and similar diets

Learn the startling differences in basic diet components between isolated cultures compared to modern diets and their grain preparation and food preservation methods. Note changes in their health before and after the displacing foods of modern commerce”. This is fascinating, sobering, relevant and largely still doable. www.westonaprice.org and www.price-pottenger.org  . health history

Note: Lifespan studies and researchers observations indicate many of these peoples lived into their elder years, taking into account lack of high tech emergency care for accidents.  More studies

Hide: Learn the startling differences in basic diet components between isolated cultures compared to modern diets.

G. Network with the gluten intolerant community long enough to assess actual trends.

Utilize local support groups and online forums. Check the Services and Vendors directory on this site,  the www.celiac.com calendar, email listserves, and the major support sites for local support group listings. Continue to keep in touch with new developments and observe their effects on the gluten free community.

 Hide:  Observe, listen and network with the gluten free community long enough to assess trends.

H.  Research your family's symptoms and health history.  Bring the the history and symptoms list with you when you see your practitioner.
 

Note: Conditions and factors mentioned on this list are not necessarily all connected to gluten grain intolerances.  Some factors help rule OUT gluten grain intolerance as a possible cause. For instance a head injury may cause seizures that have no connection to gluten grain intolerances.  Other factors may prove protective.  New research indicates that presence of gluten related genes are not necessary to develop some types of serious gluten reactivity, but if the genes are in the famiy, they do statistically predispose, development of the gluten syndrome/spectrum.

• Health conditions of genetically related family members and spouses who are parents of children with your families’ genes.

Include visible signs that are obvious in old family pictures such as distended abdomen, wasted hips, stunted growth, overweight or underweight, thick glasses, osteoporosis, tooth discoloration and other signs of poor tooth enamel, skin conditions, birth defects, amputations (from diabetes?). (Hearing and eye problems may accompany diabetes and autoimmune disorders.)

• Elder's Health - Pay attention to the health and mental challenges or lack of them of your family’s elders. Include hearing and vision challenges.

• Neurological - Ataxia, AD(H)D, learning problems,  chronic or cyclic depression, dementia, seizures/neurological/mental conditions including schizophrenia,

                         autism, and ages and circumstances of onset.
 

•  Autoimmune disorders - Particularly diabetes, Sjogren's syndrome, Grave's disease, Turner or William's syndrome, or any other autoimmune disorder.

• Ethnic Heritage - Some populations are prone to these conditions including Irish, Italian, European and Jewish peoples. Certain counties in Ireland report high

                              incidences of celiac disease.

• Environmental - Where did your family members live and what were their occupations. Include hazardous toxic exposures.  (Toxins are thought to contribute to   

                            leaky gut, which is thought to trigger food reactivtivities (See Chemical Injury on the Medical Diagrams page).

• Accidents, Injuries, Surgeries and Illnesses - Childbirth, the flu or use of antibiotics that could explain or trigger health challenges.

• Lifestyle related factors - Smoking, alcoholism, drugs, obesity, sedentary lifestyle and/or chronic or cyclic depression

• Other - Fatigue, asthma, diabetes, general ill health, joint problems, skin disorders, STD's, surgical removal of organs such as gall bladder, thyroid, hysterectomy.

• Emotional stressors - deaths, financial stresses, divorce, abuse, moves, and other stressors that could trigger long term health problems.

• Dietary habits -  This section may give a snapshot of factors that may have either aggravated or been protective for your ancestors.  In many cases it provides a

 useful contrast between dietary habits practiced less than a century ago and today.

 Fats and oils used (particularly processed transfats such as margarines and vegetable oils) as well as other dietary factors such as available

 grains, dairy products (raw or pasteurized?)  How did the Great Depression, World Wars or local famines affect the food supply? See also

 www.WestonAPrice.org

Inquire about grain preparation methods including long  presoaking,  sourdoughs and fermentation methods of food preservation such as culturing of dairy products like yogurt, kefir, cultured cream, cheese. Vegetables and fruits were often lactofermented as in true old fashioned sauerkraut and pickles not prepared with vinegar. Many cultures drank lactofermented beverages such as kefir, kvass, kombucha teas and others, etc. Researchers believe these methods made food more digestible. (Note:  Kvass is traditionally often made with rye bread which is not allowed on the gluten free diet.  However, it can also be made with beets as found in Nourishing Traditions cookbook by Sally Fallon/Mary Enig). 

Which foods were occasionally eaten raw, including meat, fish, eggs, honey, veggies?  Many cultures include recipes for raw foods (sushi, eggnog, steak tartare).  There is renewed interest in judicial use of raw foods for treating many ailments including leaky gut syndrome, which is believed to often precede food reactivity.  (See Medical diagrams)

Note excessive use of processed foods and beverages, sweets, junk foods, fast foods and consumption of dietary toxins.
 

• Reproductive history – repeated miscarriages, late term fetal death, Down's syndrome and birth defects, infertility.

• Prenatal conditions, delivery history and infant feeding practices including ages that solid foods, particularly (which) grains, were introduced.

• Vaccinations - and possible long term reactions to them.

Hide:  Research your family's symptoms and health history.

I. Find knowledgeable professionals willing to listen to your situation, learn as necessary, and who can guide you further.

Note:  This step was important for our family.  It is easy to do research online, read books, share with other patients, and mistakenly feel overly qualified to self diagnose and self treat.   Our family's experience drove us to the conclusion that personal research serves as a guide to then find qualified medical practitioners informed in areas suited to our needs.  These professionals must view medicine and healing with humble, open minded attitudes that promote their own growth and learning.

Many otherwise capable professionals are  uninformed in the gluten syndrome and that is understandable.  The key to obtaining appropriate care from them may lie in both of your abilities to listen and learn together.  Beware of practitioners whose attitudes degrade to disdain or sneering.  This community's unfinished medical climate leaves no room for arrogance and conceit regardless of skill.  These false postures may indeed stem from some superior knowledge, but they often indicate that the practitioner is not in a sensitive learning mode.  Furthermore it is not healthy for the emotionally vulnerable patient to be subjected to them.  Humility, teachability and patience are far more conducive to alert vigilance, good judgment, and professional growth,  and they foster trust and compliance on the part of the patient.

Bear in mind that some patients may be too uncomfortable to disparage their experience with a professional.  There may be a reason for hesitation, silence, or an alternate recommendation, particularly if this behavior is encountered from several patients regarding a particular practitioner.  Pray, and thoughtfully respect a nagging sense of uneasiness.  Usually when a patient has had a good experience their response will be spontaneous, and they will tell you why.
 

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Hide:  Find knowledgeable medical professionals