Category: Melissa's Earlier Blogs
It's been a stressful couple of weeks for me, and at times I traded compliance for convenience. Granted, as the unique non-secreting O that I am, I can't verge off the path too much. Gluten and milk are way off limits...but sometimes I revert to a see-food diet on other points.
I can tell you it's not worth it, but it happens. The heartburn has kept me up some nights, especially if I indulge in my son's gluten-free cookies. They are very tempting, but I think I'm ready to get past that temptation now.
My son had some extensive dental work done yesterday, and it's such a relief to have it done and past us. I didn't feel good about it for a long time, until I realized much of my trepidation was because I felt regret for being the cause of the dental problem. Since I didn't get tested for celiac disease and get seriously Gluten Free until after he was born and weaned, he didn't get the minerals he needed to build strong tooth enamel. It could have been much worse I'm sure, if I hadn't been wheat free, and there's no guarantee my next son won't have similar problems because it can take a few years for an adult celiac to regain all their absorption abilities, but I'll see it coming and do things differently to take immaculate care of his teeth. And, we caught my son's celiac disease early enough that we are taking good care of his adult teeth, and they should be fine. He's still an A, probably non-secretor, so cavities will always be something to work at preventing, and all I've learned in the past few weeks about nutrition and supplementation for teeth will benefit both my little ones. I felt like starting it now, and hoping to stop the trouble, when his teeth already had multiple cavities and extensive wear to the chewing surfaces, was like throwing buckets of water at a housefire, but it will help future teeth. And fortunately it was early enough that he had no root canals or lost teeth.
I could have done better, but I will from now on, and I could have done a lot worse. Like I said though, there's no more room for regret. He's a happy, brave boy, and fully recovered already. We didn't need the prescription pain medicine at all, he's totally fine and apparently pain-free.
Just got the results...my husband is a Secretor! That is good news, though I was kind of hoping for the opposite to simplify life. He never would have given up wheat anyway, and he really doesn't want to eat much meat at all, so I guess this is best. Now I'll need to test each child as they get old enough to spit; if he were a non-secretor, then we'd know they'll all be non-secretors too. At least they have a chance now of being secretors, and all the lower risks that implies...so it's good. I was just so prepared for the opposite.
All I hear now is how much so-and-so and who-and-such messed up in responding to Katrina. But blaming anyone is not productive. We need to just help, learn, show compassion in every way possible, and move forward. (If you didn't hear the Dalai Lama address this recently, find it!) It's silly that hearings and commissions are already being discussed. Those things take time, money and resources that should be going to the victims, and no doubt, they'll all undoubtably turn into power/money grabs in the end.
Watching 9/11 coverage on Sunday and everything about Katrina, an unnecessary family break-up in my extended family, and some reading I've done recently has really changed my perspective on life. Life is too short to do anything but love each other, from those we are close to and commited to love, to those we've never met. Without love, we are left with nothing.
I make too much room in my life for regret and worry, mostly about little things, or things I can do nothing about. Regret is just worry that looks backwards, and worry is just misdirected creativity. When I let go of those two things, and just focus on loving others, my life really makes more sense, and I make better decisions.
I've been to New Orleans twice, and I loved the city and its food. I'm far from there now, a mile above sea level, and I've never really seen a destructive storm. Yet I feel like part of me has been ripped out from what has been going on there, and I feel a vulnerability that I don't know if I'll be able to ever come to terms with.
I've got to stop projecting this on myself, but that's hard to do when something like this happens in your own country in a way that you never thought it could happen. I feel so terribly sad for the children involved, and their mothers. If I were in that situation, I don't know how we could all possibly make it out of it. It's nice to see food finally getting to the people who have been without it, yet from my perspective those MRE's would be worse than continuing to go without food. From all I can find out, the primary source of protein in them is wheat and wheat gluten. Trust me, you don't want to be without plumbing or diapers if my son or I were to take a bite of that stuff...
Is there any option in a situation like that for somebody with our health condition? Are there any organizations that can bring gluten-free aid when it is needed? I'm pretty darn sure the answer is no, nothing. Even in hospitals, who should know what they're doing, often they don't know gluten from glucose. What then, could I do for my son? He is certainly better off without food than with gluten. He got hold of a tiny pretzel stick while the babysitters were here, over a week ago, and he's still sick, probably lost at least a pound. He's been keeping me up at night with diarrhea and gas, and the cold virus that almost always follows it, due to celiac disease diverting his immune system from it's proper function. But tonight I'm up while he sleeps...
I can't sleep. I only want to take action. I only want to make absolute sure that we never get into any situation remotely resembling that. I've been searching all day for food storage options and advice, but find nothing in regard to gluten-free disaster preparedness. A 72-hour kit is the first step of course, but I may make a couple extra to extend that timeframe a bit...considering that the first food we'd get access to in a disaster situation would most likely not be gluten free. Then there's long term food storage... so hard to adapt those recommendations to gluten free. I still have plenty-o-buckets-o-wheat from my food storage efforts before diagnosis...ha. No good.
I'll post up what I come up with and discover over the next few days. The good news is, I actually do have a manual grain mill and know how to work with such things, thanks to cooking so much of our own food from scratch, so I can actually use the food in rotation. So far I can't even find information on shelf life of alternative grains, but I'll get there...
It's so easy to be critical of the lack of disaster planning for something that really was forseeable, everyone knew that if a hurricane hit New Orleans it would be a huge disaster, but nobody knew what to do when it happened. Yet...I don't have my own disaster plan for my own little family, so I need to take action where it's needed and stop wringing my hands over something I have little control over.
I decided I may be better off with ghee or goat butter, considering my reaction to cow's milk, so I finally decided to try goat butter. I am crazy about this stuff. It's my new secret ingredient in sauces, as it adds a goat-cheesy flavor that I can't get compliantly anywhere else. Heat with sweet rice flour to make a fine roux.
Here's a rough version of my penne alfredo recipe, which my super picky pasta-eating husband loves. He's so very picky about pasta and usually wont try any unauthentic type of noodle. My son love it too...calls it macaroni and cheese.
I totally approximate the amounts and add what I feel like, so I don't yet have meaningful measurements, but if you like to cook that way too, this recipe should work out great
1/3 package of Tinkyada penne pasta
1 package of Shelton's Turkey sausage patties, chop them up as they cook, remove from pan, but leave drippings in
4+ tablespoons goat butter
1/4-1/2 cup sweet rice flour (enough to make a nice bubbly roux with the butter and sausage dripings.)
After this starts to brown just a little (rice flour doesn't brown like wheat, but it'll tan a bit), add milk or milk subsitute of choice depending on type. Stir it in quickly as it will immediately start to thicken. I just eyeball the amount, somewhere near 1 cup usually. Stir until desired consistency, turn heat down, then add about 1/4 cup of nutritional yeast, and salt to taste (pepper is good, or some such as allowed)
Once the sauce and pasta are done, add them all together with the turkey, and serve
Yes, it's too grainy a meal for an O to have much of, so treat it as a side dish...my As treat it as the main meal.
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.