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Symptoms: Three Profile Stages
by R. Jean Powell, Executive Director, Montana Celiac Society

Profile #1: Early symptoms among adults are typically mild, intermittent, and routinely attributed to other causes.

  • Some bloating and gas after meals.

  • Infrequent light, puffy, foul smelling stools; or chronic constipation.

  • Bouts of unexplained fatigue (often termed "flu").

  • Numbness in hands and feet, described as "pins & needles" or "legs going to sleep."

  • Clumsiness

  • Feelings of anxiety and irritability

  • Muscle cramps after activity (i.e. the Charlie Horse).

  • Irregularity in the menstrual cycle.

  • Occasional very itchy skin rashes (Dermatitis Herpetiformis).

Profile #2:  Symptoms have exacerbated. Vitamin deficiencies begin to appear. Internal organs are becoming affected at this stage, and are unresponsive to surgeries and traditional treatment. Now begins the long, dark journey through the halls of medicine. The average time before receiving correct diagnosis in the US is 12 years; in Italy it is reported to be two weeks.

  • Gas and bloating after meals becomes chronic and painful
  • Stool incontinence, unpredictable, appears periodically.
  • Fatigue and pain that are unresponsive to treatment; performance begins to be affected.
  • Dizziness and poor balance accompany numbness.
  • Irritability, nervousness, and anxiety increase.
  • Competence is compromised by memory loss and confusion.
  • Infections, cuts that won't clot or heal normally.
  • Periodontal disease, abscessed gums, dental dysplasia
  • Muscle cramps increase in intensity and frequency.
  • Reproductive disorders such as miscarriage, infertility, and birth defects rise
  • Skin rashes, often identified as eczema, are more pronounced, and don't respond to traditional treatment.
  • Sore mouth, dry rough skin, inflamed tongue, anemia.
  • D.H. patients may become ill immediately after giving birth.

Profile #3: Symptoms are severe and life threatening. This is the stage that was commonly accepted as "Typical Celiac Sprue." Previous symptoms, those listed in stages one and two, were designated as "atypical", and traditionally patients were not treated for Celiac Disease until reaching stage 3. Today, because of researchers and physicians such as Dr. Alessio Fasano, "atypical" symptoms are given their due import, improving diagnoses of young patients.

There is no common timetable for each stage as it proceeds. Children can reach stage #3 when as young as 9 months old, once wheat is introduced into the diet; conversely, an adult might not reach stage #3 until 80+ years old.

  • Relentless weight loss, a loss of appetite, anorexia.
  • Osteomalacia (bone softening).
  • Ataxia (walking with an impaired gait); increased numbness, severely faulty balance.
  • Fatigue becomes disabling.
  • Gastrointestinal symptoms are persistent and severe. Foul-smelling stools, diarrhea, gas and bloating occur simultaneously.
  • Muscle cramps develop into tetany, affecting the heart rhythm. Edema can lead to congestive heart failure.
  • Seizures occur from calcium deposits that migrate to the brain.
  • Reproduction and menstruation cease.  Impotence becomes chronic.

There is the fourth, life-threatening stage. Patients have been known to survive this stage, if diagnosed, but they often endure more permanent forms of damage, such as various heart involvements, neurological impairment, autoimmune disorders, or intestinal lymphoma. Early diagnosis is the key to full recovery.