mcc0523

MCC0523 - I should have mentioned that I also follow the FODMAP diet - so something with very little fruit sounds good, but I'm also somewhat restricted in what veggies I can eat. The diet does sound worth a look,  though it also sounds kind of expensive. I'm especially interested in what you say as my husband has POTS and ED syndrome, like you - however, he also needs a low cholesterol diet and it doesn't sound good from that point of view - do you have any thoughts on that? It's a struggle to cook separate meals - I'm the healthier one so I do most of the cooking but I can't do too much chopping, peeling etc.

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.

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.

NO ONE says that you can't have celiac disease..no one says that you don't have a food allergy or intolerance...but for people on this website that declare they have celiac disease..without being tested..or doing the entrolab thing...is ridiculous!  

Of course you can feel better with out eating wheat...but don't go around telling people that you have celiac when you don't.  Or when a doctor saying" um...you don't have celiac.." and then those poor people that want a disease.. say well, maybe my doctor doesn't know what it is..or just doesn't want to diagnose me...or whatever the reason is this month...it is not true.  You don't have it. You probably have an intolerence  ...that is fine...declare yourself gluten free...but not celiac...

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!

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.

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.

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).

Itching is a known side-effect of aspartame.  It is number 16 of the FDA's list of known aspartame side-effects.

When I was undiagnosed, I ended up in mental hospitals 12 different times.  The majority of the hospitalizations were after a gluten binge (cookies, crackers, bread... any commercial wheat based product).  My two suicide attempts were after eating pretty much nothing but wheat the week or two preceding.

I've been gluten free for a week now.  The past few months, I have decreased my consumption of it in my diet, had it perhaps 2 times a week (for one meal).  Depression symptoms started to lift, just slightly.  This past week the symptoms have lifted even more... at least until night before last when I got glutened.  I woke up and nearly cried at the Hallmark commercial, and my thoughts have been a bit dark.  From what little improvement I have seen from even imperfectly going gluten free the past few months, I'm really excited about how my symptoms will improve from cutting it out completely.  My joint pain is... not an 8 now.  Perhaps just a 7, but it being down to a 7, again, makes me hopeful that I'll find at least SOME relief.  I know I can't change my collagen, but if forgoing gluten will keep it from degrading as quickly, and lessen the inflammation that has made the joint pain become so unbearable at times these past few years, then I will be thrilled.  By the second day of completely gluten-free, the nausea I feel from the moment I wake up until I go to bed has almost completely gone away.  Some of my social anxiety was more to do with, "Where are all the bathrooms, and how quickly can I get to the closest one if I have V or D?" and not wanting to embarrass myself because of symptoms I couldn't control.  I hope the more those go away, the more at ease I'll feel in public.

I am VERY malnourished.  According to my last blood panel, there are no detectable levels of Niacin in my body, and my vitamin D is 8.  My doctor didn't run any more vitamin levels at that time, but I wouldn't be surprised if the untested ones aren't abnormally low as well.  Low B vitamins (and all of them, actually) can cause symptoms of depression, anxiety, and other neurological symptoms, too.