Living with Celiac disease-epilepsy-cerebral calcification syndrome
A rare condition that combines an autoimmune gut disease, seizures, and calcium deposits in the brain.
Understanding Celiac disease-epilepsy-cerebral calcification syndrome
Celiac disease is an autoimmune disease of the intestines. GARD says this syndrome appears in childhood.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these features:
- Autoimmune intestinal disease (celiac disease)
- Epileptic seizures
- Calcium deposits in the brain (cerebral calcifications)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Celiac Disease Foundation and Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Celiac Disease Foundation, Epilepsy Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Celiac Disease Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet.
Also known as: cec; celiac disease, epilepsy, and cerebral calcification syndrome; coeliac disease, epilepsy, and cerebral calcification syndrome; epilepsy with bilateral occipital calcifications
Patient organizations
- Celiac Disease FoundationCeliac disease-epilepsy-cerebral calcification syndrome · United States
- National Celiac Association.Celiac disease-epilepsy-cerebral calcification syndrome · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Celiac disease-epilepsy-cerebral calcification syndrome.
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