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mcc0523 last won the day on February 28 2011

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About mcc0523

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  1. I would think about getting a new therapist. Yes, they "only" deal with emotional problems, but the good ones will recognize that physical illnesses can have things like depression and anxiety as symptoms, sometimes the only symptoms. In fact, it was a psychologist friend who first told me to consider vitamin deficiencies, perhaps caused by celiac or something else that causes malabsorption, and that he didn't believe that I ONLY had problems with depression/anxiety. Something like that (that she doesn't believe that food intolerances can lead to symptoms, even after you told her that it does do that to YOU) is a major no-no for me in a therapist and a sign that they should be fired, if at all possible.
  2. I think that low cholesterol diet is a BAD idea long term... cholesterol is found in almost every cell in the human body, and it is what the myelin sheath which coats the nerves (and what is attacked in MS) consists of. If one doesn't consume cholesterol, then the liver makes it, so if the diet is low in cholesterol (or good fats in general) it can overtax the liver, and other bodily functions, reducing the absorption of Vitamin D (which is made by exposure to sun, but if there isn't fats, especially cholesterol, to help with the synthesis, then it isn't used as efficiently) and hormone production and it increases inflammation. Inflammation should be more of a concern with heart disease than lipid levels. Half of people who have their first heart attack have a NORMAL (or what the FDA says is normal) lipid panel. Lack of good fats leads to inflammation, and with EDS, inflammation is a given frequent dislocations and hypermobility. Since I've started eating this way, my knees are now a normal size (the first time in over 3 years), and my pain levels, which used to hover around a 7 on a GOOD day, hasn't gone above a 5 in 2 weeks, maybe longer. http://www.marksdailyapple.com/cholesterol/ has a much, much better explanation of this than what I could ever do. As far as expense, it doesn't have to be. I shop on the perimeter of the store, and I get whatever is on special with the meats, and I pick the veggies that I can tolerate. By going on special, I spent around 4 dollars for 8 lamb loin chops last week (that was the meat for 3 meals), and just under 6 for a pound and a half of salmon (4 meals). I am planning and preparing a garden right now, and for chopping and peeling, something like a Slap Chop or some other vegetable chopper and a potato peeler (mine hasn't seen a potato in a LONG time, though) are great for spending less time and energy on that part of meal preparation. And at first, I was worried about doing so much chopping and peeling, but I'm feeling better enough that it isn't a big deal as I feared it would be.
  3. Try http://www.marksdailyapple.com for a primal based diet. The "diet" (lifestyle or way of eating is more accurate) is meats, veggies, and healthy fats (coconut oil, butter, animal tallow are all great; processed vegetable oils {such as canola} and anything that has been hydrogenated is VERY bad). Fruits are a rare addition, although if someone is doing heavy training, say for a marathon, then it might be consumed more frequently. All grains, legumes, and sugars are discouraged if the lifestyle is followed strictly. ETA: As far as energy goes, as long as you get a good amount of good fats, then you'll have wonderful energy levels, without the peaks and valleys that comes about with eating a carb heavy diet. I've been eating like this for the past few weeks, and I have to say that my reactive hypoglycemia has completely gone away, and I don't have periods of exhaustion. I do get tired, but one of the things that I like about this lifestyle is the notion of following the signals of your body... so if I'm tired, I'll rest. But I don't have to rest for several hours at a time to see results. Sometimes, all I need is a 30 minute nap and I'm back to full force. ETA 2: A typical day of eating is 2 jumbo eggs and 2-4 servings of veggies (this morning was asparagus and brussel sprouts), and a serving of meat (usually chicken, bacon, or whatever was left over from the previous night's dinner) for breakfast. I'm not hungry at lunch normally (only on days that I'm more active than most) so I don't eat then, but if I do, it's a smaller version of my dinner. For dinner, it is a good portion of meat, and even more veggies, or a salad with mixed greens for the lettuce. Unless the veggies are raw, I will cook all of my food in coconut oil or butter, and if I'm having salad, my dressing more often than not is the left over butter or coconut oil used to cook my food.
  4. What is ridiculous is your seemingly blind faith in the medical profession. Plus, what part of 30% false NEGATIVE rate of the "Gold Standard" tests don't you understand? That means that there are 30% of the people who have been tested for Celiac and told that they don't have it that ACTUALLY HAVE IT! Of course you can go around and trust the medical profession to always take care of patients, but as someone who slipped through the cracks for almost 25 years, don't go around and tell me to trust the medical profession when they are not trustworthy!
  5. I am looking into getting a dorm fridge... However, I'm not sure if I want to buy one now, since I'm most likely to move out. I am an adult, who is keeping my parents from being in a financial pickle by paying them rent to live here. I would rather not move out, because I know that would be detrimental to them, but I can't handle being glutened at least once a week, in my own home (I don't eat out) and I'm REALLY careful (washing my hands after I touch anything that could potentially be a source of contamination, washing my dishes by hand and rinsing them for at least 15-20 seconds, using plates instead of counters to prepare food, etc.). It may be their kitchen, but as I'm paying for use of it, it should be in such a condition that it not going to make me sick. Since gluten makes me sick, then it should be gluten free. Or I'm not going to use their kitchen. Which means I'm not going to eat, because I don't eat out... so the only option is for me to move out. I've tried to talk to my mom about this, and to say that she is resistant is an understatement. My dad is more supportive, but is unable to counteract my mom's strong personality when it comes to things like this.
  6. I got glutened from my dad, who wiped his hands, but did not wash them (or even rinse thoroughly) after eating a doughnut before he reached into a bag of my almonds (that I later ate). I am working on my parents into making at least the kitchen gluten-free, and not physically interacting at all with my mom, as she insists upon wearing Aveno products (and she touched my hand after putting on lotion, and I broke out in a rash only where she touched), and pretty much making my dad scrub for surgery before I'll do so with him. I also reacted BADLY to an apple that was cut with the same knife that had cut sandwiches before hand. Both of these, I didn't find out the source until afterwards. So, I was wondering if there were other people who were super sensitive who lived in a non gluten-free household. Do you have any further tips to keep me from getting glutened? I have so much anxiety at my own house because, although the wheat bread that is used for sandwiches is made on a plate and not directly on the counter, my parents are very messy and will still leave crumbs. I'm so tired of having to wipe down the whole kitchen before every time I cook something, and I am the only one I trust to do my own dishes, as my mom is terrible about leaving residue on plates. The few times my dad had done them, his picture has been taken. Am I wrong to want, at the VERY least, to want them to make it a gluten-free kitchen, especially since they have made me sick already? I don't want them to never eat it again (well, I do, because I think they could benefit from going gluten-free), and if they want to bring home glutened take-out, they can eat it in the dining-room. They could also make their sandwiches, and put their glutened crackers in their glutened soups there, too.
  7. What Do You Do?

    I am a musician, currently training to be a church organist. I've previously had voice and piano training, plus 7 years of band in school. I don't know exactly what I want to do with music, but it is more important to me than most anything else. I'm especially fond of Gregorian Chant, and sing with a Gregorian Chant Schola every Sunday. I am a Trekkie and I know enough random Star Trek facts to completely blow anyone else out of the water were I on Jeopardy and it was one of the categories. I'm glad that I've had to go gluten-free and cook most of my food, because I have discovered just how much I LOVE cooking! I think it would be neat if I could open a "Naturally Gluten-free" restaurant... if it didn't interfere with music, that is.
  8. Get a new doctor. Doctors work for you, you (and/or your insurance) pay them. If they aren't providing the services that you are paying them for, fire them. I'm sorry you've seen such a jerk. They are many of them out there, unfortunately. Perhaps there is a local Celiac support group could give you the name of a good Celiac knowledgeable doctor.
  9. I've had "possible MS" mentioned to me, by doctors and other MS patients. I had the "walk", stiff and shuffling of feet. I have a borderline-Chiari malformation, which can cause symptoms that are similar to Celiac/gluten-intolerance, and if I hadn't gone gluten-free, I would have probably had surgery by now. I'm so glad that I had others in my life talk about their own issues with gluten, and eventually convince me to try it, just try it for a few weeks, and see what happens. And I am NOT going back on gluten, not on purpose (I've been cc'ed yesterday... oh I forgot how much the stomach pain SUCKED!) I have been talking about Celiac and gluten-sensitivity to others. I know my parents could benefit greatly from a gluten-free diet... plus they wouldn't be as likely to cc me. My best friend has gone gluten-free, and he hasn't felt better in years. He is also trying to convince his parents to do so, as they are VERY addicted to the stuff. I'm sure I annoy people... "Oh no, it's the "gluten-free" girl again! Run, HIDE!" But I hope to at least plant seeds, like others who have had Celiac/gluten-sensitivity have done for me in the past.
  10. I would like my whole kitchen to be gluten-free, but as I live with my parents, and they still eat gluten, I wash dishes now at least two or three times as I wash everything after I use it, and then before I use it again, as I don't trust my parents to yet not cc me, and they use the same dishes. I am feeling better and my gastric symptoms have pretty much disappeared, although I still want to get a whole set of new dishes to be declared gluten-free, and separated out from the rest of the kitchen. I have been talking to my dad and several of his symptoms he's had his whole life that I'm sure are related to him eating gluten... just bringing it up here and there. I've heard a few mumbled "maybe you're right" and a quick change of subject. He is addicted to crackers and bread most of all, and I don't think he is mentally ready to go gluten-free. I keep talking about how great I feel, and I mention I think he'd also feel better if he would just try it, and how I didn't think that it would help when I went on it, but as my other option before going gluten-free was surgery, I hoped that going gluten-free would relieve the neurological symptoms that could also be attributed to my chiari malformation (it's a borderline one, but those also cause terrible symptoms) I've been plagued with for the better part of 5 years. I might still have to have surgery, but I have no doubt just with how much better I feel already that gluten is a bad thing for my body, and if I have to have it then, well I'll be much healthier and more able to withstand having the back of my head cut open by the time I make that decision (I'm giving a good year to see how much reverses).
  11. Perhaps the times and sizes are a bit different, but this is very similar to my whole gain/lose history, too. I was anemic the last blood draw, with no niacin in my blood the last time it was tested (and many other things were really low). I have stopped weighing myself for the past few years, but I have had to keep a range of clothing sizes, from 6-14. One time, I got up to a size 16. My weight started fluctuating so much from month to month that I have started wearing elastic waisted floor length skirts all of the time as it helps to hide the fluctuations (and then I realized that I like skirts much more than I ever liked jeans). At one point, I was SOOOO hungry all of the time, and I ended up binging for the better part of a year, at least a sleeve of crackers, a whole box of cereal, mac and cheese. I was also sick to my stomach all of the time. Before I went gluten-free, I had endured over a decade of throwing up at minimum 2-3 times a week. Since going gluten-free, I haven't thrown up once. My stomach has been distended for many years, and I'm sure that it is related to how malnourished I've been. It's not gone down as quickly as I'd hoped after going gluten-free (but I've only been so for around a month), it is somewhat smaller. My joints aren't as swollen, either.
  12. I'm grateful that I was able to hike earlier 2.5 hours in the woods. A feat that was impossible 2 months ago, that I had given up for good (that was such a horrible night when I told my best friend that I would never be able to do that again... I actually cried over that). I went gluten-free a month ago, and I can already tell such a difference in how I feel. In general my energy levels are starting to pick back up again. I can now gladly give up beer (the only thing I still wasn't OK with giving up before this hike, actually) and I do mean gladly! I love hiking much more than I could ever love beer (and that's a lot). I'm grateful that my friend is going gluten free (actually, I've been following more of a primal/paleo diet, and now so is he) with me, and that he is starting to feel a difference in his health, too. I've suspected that he has had problems with gluten for awhile, and that he was able to hike with me today is a good sign (since he's been gluten-free for awhile, too) that gluten is not his friend, either. I'm grateful for people where I go (school and church) that make sure my needs are taken care of, but do so in a way that makes me feel normal. I'm grateful that it's not all "in [my] head", that I'm not completely losing my mind. I knew that I wasn't when it appeared that I was, but I couldn't convince others of that for a long time. I now have my parents in my corner (as best as they can right now... but they finally know that I'm not going crazy), and I even have a few good doctors that believe me and actually listen to me, not cut me off mid-sentence and just shove pills my way that was just dropped off by the pharmaceutical rep. One actually told me that me not throwing up since the day I went gluten-free was a pretty good sign, and it seemed like my body was telling me something and I should listen to it. There are so, so many more things that I'm grateful for, some even more than what I listed here.... I wish I'd gone gluten-free much, much sooner.
  13. It is difficult to know which one is lucky... both of us are, I suppose, because we know what makes us sick and how to avoid it. I am hopeful for the future of gluten-free-beers... and you're right, cider is pretty awesome. I am also hopeful that in a few years, there will be at least one good gluten-free beer out there. If not, I can learn to love cider as much as I do beer.
  14. I understand not having even a sip... *sigh* I guess I need to start looking into alternate grains, and use my current brewing knowledge and come up with a good alternative. I've been especially missing my IPA, so I could come up with something that uses A LOT of hops. I wonder how brown rice does in beer, too. I can't think of anything to take the place of a stout right now, but I want to come up with a good gluten-free stout recipe. I am more of a fan of Wild Wings Cafe, but I appreciate the combination of wings and beer. It was fun while it lasted. The only beer that I threw out within the past 2 years WAS a Red Bridge. And I tried... I really, really tried to like it, but it's just not going to be possible. Woodchuck is GREAT! Magner's Hard Cider is good, too, and I recently found two other gluten-free ciders at my favorite beer market. They do have other gluten-free beers besides Red Bridge, but the owner (whose taste in beer I trust) stated they weren't very good at all. ____________________________ I guess I'm just going to have to come up with some gluten-free beer recipes. I'm actually kind of excited about researching to see what sources of fermentable sugars I can use. I know that hops are safe (although I'm sure cc is an issue sometimes), and I am curious what brown rice, buckwheat and other gluten-free grains would be like.
  15. With Ehlers-danlos syndrome, which causes joint pain, it's not uncommon to also develop Celiac/gluten-intolerance (I'm a member of several chronic illness message boards, and it's surprising the people who have both EDS and Celiac). If you have a history of being hypermobile/flexible in your joints (even if they aren't now... ironically hypermobility can turn into extremely stiff joints later in life due to joint damage and wear), and also have skin issues, like it is stretchy, very soft, and you get atrophic or cigarette paper scars, you should look further into this. There are further complications that can sometimes occur with EDS.
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