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I've finally gone and subscribed to the Scott-Free Celiac Newsletter, from www.celiac.com. I think I now subscribe to most every newsletter or magazine there is in the US about celiac disease, (which isn't many) but this one is by far the most information-packed. I've been spending the last week reading all the back-issues, and learning a great deal of good information about diet strategies, future treatment, diagnostic procedures, and how other celiacs manage the diet.
Next to the abyssimal diagnostic rates for sufferers of celiac disease, the saddest part is that 30-40 percent of all diagnosed celiacs DON'T follow a Gluten-Free diet. That shocked me, until I thought about it, and realized how common it is even among the few celiacs that I know. I know a few others who won't go through the diagnosis simply because they don't want to do the diet. That isn't helped at all by their various doctor's attitudes regarding the disease...you practically have to tell a doctor "my sister has celiac disease, and I get diarrhea only and always after eating gluten...and I'm miserably sick" before they'll consider running any screening tests. Most celiacs can't honestly say all that, as the older you are at diagnosis, they less likely you are to have notable diarrhea, and most siblings don't have their diagnosis yet either! Yet, such easily-ignored symptoms as anemia, osteopenia and constipation can mean high risks for more severe outcomes, such as lymphoma and severe autoimmune disorders.
Rather than bemoaning ignorant doctors and non-adaptive patients, I'm going to try to focus on those who do embark on this dietary way of life. You all need to pat yourself on the back for your efforts, and I commend you. I'm proud of everyone I know who considers it, looks into it, gets checked for it, then tries the diet out and sticks with it. It really does change your way of thinking, your appreciation for life and health, and your appreciation for friends and family who help you along the way. Not to mention that it can improve your communication skills!
I also learned that my recent anemia is pretty common, even long after diagnosis and the gluten-free diet. Interestingly, Dr. Tom Greenfield pointed out to me that on the gene maps, hemochromatis (high iron) is tightly linked (neighbors on the genome) to the gene for celiac disease. This trait of hanging on to all the iron you can get could be somewhat of an advantage historically for celiacs, in my opinion (before iron supplements made it too easy to go overboard). I think it's what warded off my anemia for years...I started out with fairly high iron (ferritin) before I stopped absorbing it well (I'm fairly certain that my bad case of mono at age 19 is what put my celiac disease into full-swing, so I wasn't always an active celiac - though surely gluten intolerant from my early teens.) My son's anemia, on the other hand, resolved itself without extra supplementation within 2 months on the GF diet. Youth must speed healing, even though he had such an active classical case of it. I hardly remember the little monster he would become when he had gluten...biting me, screaming, arching his back and not letting anyone try to comfort him. He's such a sweet little person naturally, when he's healthy.