ReferenceA map, a dataset, or a directory. It makes no recommendation.
Patient Organizations
This page maps the organizations and advocates working for people with celiac disease and other gluten-related disorders. They are not brewing roles, and they belong here anyway: they set the expectations a gluten-free claim has to meet, they fund and interpret the clinical research, and they are the constituency the labelling rules exist to protect.
This site does not give medical advice, and neither does this page. The organizations listed here do patient-facing work; anything about diagnosis, treatment or personal risk belongs with them or a clinician, never with a brewing site.
Page established 2026-08-25 · filled 2026-08-27 from entries this site already holds, chiefly the celiac and health and testing and certification research pages.
How to read it — entry rules, and what a listing means
Two kinds of entry. Where an organization is already described elsewhere on this site, this page carries a pointer: name, role, subjects touched, link to the page that owns the description. Where they are not, this page carries the entry itself. Nothing is described in two places.
Described, never endorsed. A listing is a map reference, not a recommendation, and implies no relationship with this site. Listing an organization is not agreement with its positions, and is never a clinical referral.
What qualifies. A public-facing organization, programme, or published body of advocacy work. Private individuals are not listed without consent.
Corrections and removals: contact us.
The roster — who advocates
The three US organizations this site points readers toward are described in full, with how each differs and how to approach them, on celiac organizations. That page owns those descriptions; this one indexes the role and carries the rest.
— US patient organizations —
Celiac Disease Foundation — United States, founded 1990. A 501(c)(3) patient organization spanning education, advocacy, a patient registry and a Scientific Advisory Committee. Celiac organizations · the organization · Verified 2026-08-26
Beyond Celiac — United States, founded 2003. A patient organization formerly named the National Foundation for Celiac Awareness; both names appear in this project's archive, which makes the change a useful dating marker when reading older documents. Celiac organizations · the organization · Verified 2026-08-26
National Celiac Association — United States. A 501(c)(3) whose work is community-facing: a support group network, webinars, restaurant directories, and direct guidance on alcohol. Celiac organizations · the organization · Verified 2026-08-04
Gluten Intolerance Group of North America — Auburn, Washington. The patient organization that also operates a certification scheme and, unusually for an advocacy body, publishes primary laboratory research; two of its staff are authors on the celiac-patient beer antibody study. Celiac and health · the organization · Verified 2026-08-26
Celiac Support Association — United States; formerly the Celiac Sprue Association. The patient organization that ran the 2014–15 gluten-reduced beer survey with Bard's — 985 respondents, three quarters of them celiac-diagnosed — whose data this site holds and publishes. The survey results · the dataset · Verified 2026-08-26
— Independent testing and public scrutiny —
Gluten Free Watchdog — United States. A patient-facing organization that publishes independent product testing and contests scientific and regulatory positions in public. Testing and certification · the organization · Verified 2026-08-26
Gluten Free Watchdog's objection to the Prolamin Working Group statement — a published body of advocacy work: a patient-advocacy organization publicly contesting the scientific position on how gluten is determined in fermented foods containing partially hydrolyzed gluten. The objection · testing and certification · Verified 2026-08-26
— International —
Coeliac UK — United Kingdom. The largest and longest-established coeliac charity outside the US, and a funder of research in its own right. Celiac and health · the charity · Verified 2026-08-26
— Research programs run from inside patient organizations —
Celiac Disease Foundation research program — United States. The arm through which a patient organization funds and promotes research and recruits for trials, rather than only providing patient support. The program · celiac and health · Verified 2026-08-26
Beyond Celiac research program — United States. A research agenda aimed explicitly at treatments beyond the gluten-free diet. The program · celiac and health · Verified 2026-08-26
— The public references a drinker meets first —
Not advocacy organizations, and listed because they occupy the same space: these are where a great many people form their understanding of this condition long before they read a beer label.
Mayo Clinic, as a public reference — United States. Publishes one of the most-read lay clinical references on celiac disease, alongside its research role. Mayo on celiac disease · celiac and health · Verified 2026-08-26
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), NIH — United States, federal. The institute that carries celiac disease in its portfolio and publishes the government's clinical reference on it. NIDDK on celiac disease · celiac and health · Verified 2026-08-26
This roster grows only through public work: organizations, programmes, and published bodies of advocacy. It is never a list of patients.
Bodies & gatherings — the coalitions, conferences and awareness events this role runs through
Association of European Coeliac Societies (AOECS). The umbrella body federating national coeliac societies across Europe, and the owner of the Crossed Grain licensing scheme: a patient coalition that also operates a labeling standard. AOECS · celiac and health · Verified 2026-08-26
The University of Chicago Celiac Disease Center. The academic celiac center that supplied the patient sera behind the only study we have found testing gluten-free and gluten-removed beer against actual celiac patients' antibodies. The center · celiac and health · Verified 2026-08-26
Columbia University Celiac Disease Center. One of the two US academic celiac centers this project's archive records a gluten-free brewery approaching as it brought a sorghum beer to market. The center · celiac and health · Verified 2026-08-26
Celiac Center at Beth Israel Deaconess Medical Center. Harvard teaching hospital celiac center, and the institutional home of the gluten-challenge work behind claims about what a given exposure does. The center · celiac and health · Verified 2026-08-26
Center for Celiac Research and Treatment, MassGeneral for Children. The center that is the source of the recorded position that an R5 ELISA is designed to detect cross-contamination with naturally occurring gluten rather than gluten that has been enzymatically degraded. The center · celiac and health · Verified 2026-08-26
The academic centers' patient and clinician programming. The field's working calendar: recurring public-facing programming at both US centers, including a long-running annual Columbia benefit and continuing-medical-education sessions, per a decade of their own mail in this project's archive. Dates and current programs belong on the centers' own pages, not on a brewing site. Columbia · University of Chicago · Verified 2026-08-26
The Celiac Disease Foundation's patient education and advocacy programming. Including a Patient Education & Advocacy Summit recorded in this project's archive. The organization · celiac and health · Verified 2026-08-26
The Prolamin Working Group (PWG). Founded 1985 at the University of Leiden; thirteen executive members across gastroenterology, immunology, biochemistry, plant science, food chemistry and gluten analysis; holds observer status at Codex Alimentarius and produces the PWG-gliadin reference material gluten methods are calibrated against. The body whose statement on fermented foods a patient-advocacy organization contested in public. PWG background · testing and certification · Verified 2026-08-26
Codex Alimentarius. The international food standards body that names the R5 ELISA as the type 1 method for gluten, and the forum where the Prolamin Working Group holds observer status. Codex · testing and certification · Verified 2026-08-26
FDA. The agency that sets and interprets the gluten-free labeling rule for foods, including the rule on fermented and hydrolyzed foods. FDA Q&A · can you call it gluten-free · Verified 2026-08-26
TTB. The bureau that governs beer labeling and advertising, including what may be said about gluten; Ruling 2008-3 determines which products fall under its authority at all. Ruling 2008-3 · FDA vs TTB labeling · Verified 2026-08-26
National Institutes of Health, via NIDDK. The federal funder whose portfolio covers celiac disease research: the door a patient organization's research program applies through. NIDDK · celiac and health · Verified 2026-08-26
The clinical conferences where diagnostic and terminology consensus is formally revised are not yet indexed. See celiac and health, which records the same absence.
Working with them — how a brewery or researcher engages this role
Start with what each organization is, not with what you want. The three US organizations, how they differ, what is reasonable to ask, and what is not, are set out on celiac organizations. That page states the boundary plainly: these organizations protect their credibility by not lending it to products.
Have the beer right before you raise it. The standard this site holds a gluten-free beer to (grain that never contained gluten, rather than gluten removed from grain that did) is on truly gluten-free.
Know what their community has already said. The 985-response gluten-reduced beer survey a patient organization ran is tabulated on gluten survey results, with the raw figures on the dataset page. It is the largest thing this site holds about what these drinkers report.
Know what your label is claiming. The derivation and the limits of the 20 ppm threshold are on can you call it gluten-free, and the agency question (which rulebook your grain bill puts you under) is on FDA vs TTB labeling.
Certification is a separate role. Where a patient organization runs a certification scheme, the scheme is described with the other schemes and laboratories on labs & certifiers.
How this role connects — documented links to other roles and subjects
- This role is a certifier on two continents. The Gluten Intolerance Group runs GFCO in the US; AOECS owns the Crossed Grain licence in Europe. Patient advocacy and product certification sit inside the same institutions on both sides of the Atlantic, which puts certification close to the people it protects and puts an advocacy body's name on a commercial mark. Both directions are worth a reader's attention. GIG · labs & certifiers
- This role also publishes primary science. Two Gluten Intolerance Group authors wrote in 2017 that there are no validated testing methods allowing quantitation of all the hydrolyzed or fermented gluten peptides that might be harmful: a certifier's own laboratory publishing the limits of what it certifies. Advocacy overlaps researchers here rather than only funding them. The study
- The role's evidence reached brewers before any regulator's did. The same paper found no celiac patient's serum bound to proteins in the gluten-free beer, while two of seven patients who reacted to barley also reacted to the gluten-removed beer: this site's central claim, tested on patients rather than on assays, and published from a patient organization's lab. Gluten-reduced beer is not gluten-free
- The FDA said in 2020 what a patient organization's scientists said in 2017. The agency's rule on fermented and hydrolyzed foods rests on current gluten tests not adequately detecting gluten in them. The measurement problem was documented from a certifier's laboratory first and regulated afterwards. Testing and certification
- The scientific dispute has patients' advocates inside it. The Prolamin Working Group produces the reference material everyone's numbers are calibrated against, holds Codex observer status, and published the statement on fermented foods; Gluten Free Watchdog published a public objection to it. This subject is not a settled technical field with a lay audience. The objection · testing and certification
- The threshold this role speaks for is a dose calculation wearing a concentration's clothes. The trial underneath 20 ppm established a tolerable daily gluten intake; a labeling limit is a concentration in a food. Beer is where that translation strains, because a serving is large and people rarely have only one, which makes this the role with the sharpest interest in how a brewer states a number. Can you call it gluten-free
- This role produced the only large consumer dataset the category has. The Celiac Support Association's 985-respondent survey with a gluten-free brewery is what brewers and writers & educators now have when they describe how celiac drinkers treat gluten-reduced beer. Advocacy generated the evidence; the trade uses it. The survey results
- Two methods, unrelated, point the same way. 39.8% of surveyed celiac respondents reported a physical reaction to gluten-reduced beer, and the laboratory work found celiac-specific antibody binding to gluten-removed beer. Neither is a clinical trial and neither proves harm; that a patient organization's survey and a patient organization's lab converge by different routes is the finding. The survey results · the study
- The vocabulary was standardized; the label was not. The Oslo definitions fixed these terms in the literature in 2013, and this site's survey caught the consequence in the market: 43.4% of respondents did not know at purchase that the beer contained barley. That gap between agreed definitions and shelf reality is the working brief of this whole role. Oslo definitions · the survey results
- This role was the gatekeeper before the certifiers were. This project's archive records a gluten-free brewery approaching the Celiac Disease Center at Columbia, the Gluten Intolerance Group and the Celiac Sprue Association as it brought a product to market. The route to credibility ran through clinical and patient bodies before a standard existed to earn it against. Celiac and health
- This role sets the information environment a brewer sells into. A newly diagnosed person reads these organizations' pages in their first month, and what those pages say about beer becomes a default position for years, which places this role next to writers & educators in effect, whatever the difference in remit. Celiac organizations
- Nobody funds the question this role's constituency asks at a bar. Three multinational pharmaceutical sponsors fund celiac therapeutics; we have found no funder anywhere supporting research into what people with celiac disease drink. The demand side is backed by drug development intended to make the diet unnecessary; the supply side is backed by homebrewers buying their own grain. Celiac and health
- The decisive test sits inside this role's constituency, not in a brewery lab. Gluten immunogenic peptide testing measures whether gluten reached the person rather than what an assay can find in the glass: an analytical dispute that is unresolvable in the beer and answerable in the drinker. Celiac and health · testing and certification
Who's missing — where this page's coverage runs out
- Outside the US and the UK, this page has an umbrella and no members. AOECS federates national coeliac societies across Europe, and we have verified none of those societies individually. The roster is Anglophone because our sources are, not because the field is.
- We have found no patient organization whose remit is the drinker. Every body listed here represents people with celiac disease and gluten-related disorders in general. Of the three US organizations this site describes in full, our own page records only one as offering direct guidance on alcohol. Celiac organizations
- Non-celiac gluten sensitivity has consensus criteria and no organization here. The Salerno criteria define the condition, and a large share of the gluten-free market is these consumers; we have found no patient body representing them specifically. Celiac and health
- Individual advocates are almost entirely absent, by rule. Nearly every entry above is an organization or a published body of work. The public-facing individuals who do this work are not listed because consent governs that, and we have not sought it.
- We have not contacted any organization on this page. Nothing here reflects their current positions, and our own celiac organizations page states the same limit: we read their public sites and have not verified their current published positions on beer. Celiac organizations
Advocate for the people this beer is for? Tell us.