Hey readers! 👋
Welcome back to another week of celiac news and insights. This week we're diving into why symptoms can stubbornly stick around even when you're doing everything right on a gluten-free diet, how patient voices are shaping the future of celiac treatment research, and why kids with short stature - even without tummy troubles - might need a closer look. We've also got a fantastic podcast episode on micronutrients, updates on early immunotherapy research, and some practical resources for families. Let's get into it.
🔍 This Week's Highlights
Why Symptoms Persist on a Gluten-Free Diet
If you've been strictly gluten-free and still don't feel great, you're not alone, and there are real, treatable reasons worth investigating.
Celiac Disease Treatment and Continuing Symptoms is a detailed article from Celiac.com explaining why healing can be frustratingly slow for many adults with celiac disease. The numbers are sobering: while 81% of patients see their tTG-IgA antibodies normalize within about 11 months, only 8% to 18% of adults achieve normal intestinal mucosa within 16 to 24 months. Children tend to heal faster, but for adults, patience and persistence are essential. - Celiac.com
"When symptoms continue, the most important first step is to look carefully for common and treatable causes."
The article outlines a practical checklist: hidden gluten exposure (including cross-contact and mislabeled products), lactose intolerance, FODMAP sensitivity, small intestinal bacterial overgrowth (SIBO), gut microbiome imbalances, low stomach acid, autoimmune gastritis, and nutrient deficiencies. If you're still struggling, this is a helpful framework to bring to your next appointment. A companion podcast episode covers the same material in audio format for those who prefer listening.
Patient Voices Are Shaping Celiac Research
How the Celiac Disease Foundation and Biopharma Partners Are Turning Patient Voice Into Scientific Evidence details how the Foundation's patient-engagement programs are generating real-world data to support treatment development. Three studies presented at DDW 2026 and ISPOR 2026 quantified the disruption caused by accidental gluten exposure and showed strong patient interest in adjunctive therapies beyond diet alone. - Celiac Disease Foundation
"Even among patients reporting excellent gluten-free diet adherence, a meaningful percentage continued to experience moderate-to-high symptom burden."
The iCureCeliac registry data confirmed what many of us already know firsthand: strict adherence doesn't eliminate symptoms or productivity losses for everyone. The research also identified practical barriers to clinical trial participation, including gluten challenges, eligibility restrictions, and delays accessing medical records. Foundation-referred participants converted to enrolled patients at higher rates, which is a useful signal for future study design.
🧒 Pediatric Focus
Celiac Disease in Children: Still Underdiagnosed
Tiny Guts, Tough Fight: Celiac Disease in Children features pediatric gastroenterologist Dr. Maricruz Crespo, who was diagnosed through her own son Julian. The piece highlights a striking statistic: only about 1 in 10 children with symptoms that should prompt testing actually get screened. - WALB News
"They come with belly pain or diarrhea, constipation, and the first thing you think is not celiac disease," explained Dr. Crespo.
Red flags in kids include poor weight gain, chronic diarrhea, and delayed height growth. The article also offers practical reminders about cross-contamination and label reading. If you're navigating restaurants with a celiac child, tools like the Find Me Gluten Free app can help you locate safe dining options before you even leave the house.
Relatedly, a study from Leiden University Medical Center reminds clinicians that short stature alone, even without GI symptoms, should prompt consideration of celiac disease. This is an important message for pediatricians and parents alike: celiac doesn't always look like a stomach problem.
For parents looking for comprehensive overviews, both KidsHealth via Hospital Sant Joan de Deu and Children's National Hospital published thorough guides covering symptoms, diagnosis, and daily management. Boston Children's Hospital also has an excellent condition overview noting that celiac affects roughly 1 in 133 people in the U.S. and remains frequently undiagnosed.
🧬 Research Updates
Nexvax2 Immunotherapy: Phase 1 Data
Epitope-specific immunotherapy targeting CD4-positive T cells in coeliac disease reports results from two Phase 1 trials of Nexvax2, a peptide-based vaccine designed for HLA-DQ2.5-positive adults. The approach aims to render gluten-reactive T cells unresponsive. At the maximum tolerated dose of 150 micrograms, the vaccine modified immune responses to gluten peptides without worsening intestinal damage. - The Lancet Gastroenterology & Hepatology
This is early-stage work, and there's a long road ahead, but it's encouraging to see immunotherapy approaches being rigorously tested.
Several research reviews surfaced this week that paint a richer picture of celiac disease biology:
Celiac disease genetics: past, present and future challenges notes that 40 genomic loci beyond HLA have been identified, many shared with other autoimmune conditions. However, it's still too early to use genetics clinically for individual risk prediction. - PubMed
Microbiome and Gluten explores how early-life factors shape both celiac risk and gut microbiota, and how dysbiosis associated with celiac disease is not fully corrected by a gluten-free diet. - PubMed
Shared genetics in coeliac disease and other immune-mediated diseases positions celiac disease as a valuable model for studying autoimmunity because it has a known environmental trigger. - PubMed
Non-dietary therapies for celiac disease reviews adjuvant treatment options, noting that up to 30% of patients with gluten-related disorders continue experiencing symptoms despite dietary management. - Serena, D'Avino and Fasano
🎙️ Podcast Worth Your Time
Episode 48: Healing Beyond Gluten - Micronutrients, Gut Health & Celiac Disease features registered dietitian Jessica Lebovits discussing why deficiencies in iron, vitamin D, calcium, folate, and B12 can persist even after going gluten-free. She advocates a "food-first" strategy for building a nutrient-dense diet and offers practical guidance on when testing and supplementation make sense. A really worthwhile listen. - Good For You Gluten Free
📱 Quick Bites
Children's National Hospital Gluten-Free Diet App - A free digital resource center with safe/unsafe ingredient lists, recipes with cooking videos, shopping tips, and a monthly podcast. Great for newly diagnosed families.
ESPGHAN position paper on gluten-free diet for pediatric patients - Evidence-based recommendations covering food labeling, cross-contact prevention, and nutritional considerations for children with celiac disease. A solid reference for practitioners.
Dr. Maureen Leonard's CDGEMM Study - Following at-risk infants from birth to age five to study how gut microbiome changes relate to celiac development. Important longitudinal work.
Find Me Gluten Free live event - Mark your calendars for an upcoming Substack live session covering cross-contamination, what to ask your server, and the mental load of eating out gluten-free.
Until next week, take care of yourselves and each other. 💛
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