Meade describes her journey to celiac disease diagnosis, and the symptom that finally tipped off one of her doctors as to the true cause of her health problems.My symptoms started early in high school and were always quite subtle for about five years. The symptoms can vary quite widely but they are all due to autoimmune intestinal damage (my intestinal vili which normally provide the proper surface area for proper absorption can be viewed as a type of casualty from a war my immune system improperly wages against dietary gluten) and subsequent malabsorption and vitamin deficiency. I presented with the following symptoms (some of which I only realized as symptoms after seeing improvement once gluten free):
– chronic fatigue (i could and would sleep at any given chance, sometimes for 14+ hours at a time and still be exhausted) this was due to vitamin b12 deficiency from malabsorption
– frequent stomach aches that worsened over the years and eventually evolved into gall stones, which are associated with the disease. most people who develop gall stones don’t develop them at 21 like i did
– bloating, diarrhea and general gastrointestinal distress directly following meals, especially those containing lots of gluten
– very easy to bruise, very thin fingernails, very thin hair all due to vitamin E deficiency
– chronic migraines (i didn’t know these were celiac-related until they went away)
– mild neuropathy: it was very easy for my arms and legs to fall asleep.. sometimes just wearing a backpack for ten minutes would do it
– patches of mild eczema
– mouth ulcers / canker soars / perleche / tonsoliths apparently due to deficiencies in B vitamins
– inexplicably abnormal pap-smears
– weight loss
other known symptoms with which i did not present include dermatitis herpiteformis (a rash that looks a lot like terribly bad body achne), weight gain, anemia, bone/joint pain. untreated celiac can lead to cancers and infertility especially in women.
it was the mouth sores that clued me in because they were so chronic and the dermatologist did a culture to show they were not caused by bacteria or yeast… which meant they were malabsorption. and with a healthy diet there was no reason for me to have vitamin deficiencies like that so i looked to my family history and knew celiac was the culprit. after extensive blood work and intestinal biopsy both of which were actually negative(!), i decided to go gluten free anyways. all the symptoms cleared up right away while i was on a very strict gluten free diet. when i am more lenient with the diet the first clue is bloating and the second clue which follows a day or 2 later is the mouth sores. they are extremely persistent and painful and only resolve with persistent adherence to the diet, but i am also grateful for them because they are the tell-tale sign that i’ve eaten something contaminated and need to do some detective work.
In some ways, the long journey and frustrating lack of diagnosis is common, but it seems that each patient has a different experience, both with the disease, and with diagnosis. What is your story? Please leave a comment