Recommendations for
Persons Diagnosed Years Ago
The following are recommendations I would make to a friend as a result of my own experiences with celiac disease. It is not meant to to be a substitute for medical advice - please consult your own medical team regarding treatment, diagnostic and medical concerns.
It used to be thought that people often "outgrew" celiac disease (or Celiac Sprue as it was commonly called then). This was the widespread opinion of the medical community in the past.
It is now widely accepted by the medical community that a person never outgrows celiac disease. It is a lifelong condition. The confusion still persists because often people's symptoms go dormant for years at a time after being on the gluten-free diet. This does not mean you don't have it anymore. You still have it, and are probably doing damage to your upper intestines without realizing it. You are therefore risking many serious complications such as osteoporosis, peripheral neuropathy, and lymphoma to name just a few. Also, a celiac who is not following the gluten-free diet may start feeling symptoms again as they age into maturity, but mistakenly blame these on aging. These symptoms can be things like frequent headaches, digestion problems, joint pain, and many others!
Educate yourself with the latest information about celiac disease (see About Celiac Disease). Learn about the extremely varied symptoms, the health risks, how prevalent it is, and that it is a lifelong disease. Also read the recently published article titled Following Celiac Disease into Adulthood that addresses this topic. Another very informative article titled Gut Check - Belatedly, an Illness of the Intestines Gets Notice in U.S. was published in December 2005 in the Wall Street Journal.
If you are confident your original diagnosis was correct, begin and stay on the gluten-free diet for the rest of your life, no matter how good you feel. A periodic screening for antibodies should be considered to determine your level of compliance with the diet, as well as yearly comprehensive checkups to check for vitamin and mineral deficiencies. Consider having other first-degree relatives screened for celiac disease.
If you are not completely confident of the original diagnosis, consult with a qualified, informed doctor on celiac disease. A screening test (a simple blood test) may be done to reconfirm the celiac disease diagnosis (see Testing). Don't go back on a gluten-free diet until you have had this screening, so the results will be accurate. The commitment needed to stay on a gluten-free diet for life is a significant one, and you don't want to have any questions in the back of your mind about it. There are also implications for other family members being tested if you do have celiac disease. If the diagnosis of celiac disease is positive, follow the gluten-free diet for the rest of your life, no matter how good you may feel. Consider having other first-degree relatives screened for celiac disease.
