Multiple Sclerosis, No Celiac Decease, Tooth Trouble, and So Ends the Music

Good news, I don't have Celiac decease! Bad news is we still don't know why I am pumping vitamin D out faster then I take it in. The physicians assistant told me she wasn't worried about it, she must not know how much I hate that one? For now I will take my 100,000 iu of vitamin D and see what happens. It's bad when the prospect of having another decease isn't that bad, if it means getting some answers.

The boy has his last concert with the honors symphonic winds tonight. He doesn't graduate until next year, but he will be doing work release next year, or is it work study? I need to learn that, one of them isn't good. We will be sad to see it go, but we enjoy it more than he does. He should love it, without a seconds work at home, not one minute of practice, he has cruised through it with A's, and can play anything with a reed. Maybe someday he will appreciate the talent he has, for now, he is just glad it's over.

I have to schedule going to the dentist, something I hate to do, not because it hurts, but rather because it takes so long. My parents paid for the dentists vacation home when I was a kid, not because I didn't take of my teeth, I had issues. I still have issues, I know, but we are talking teeth people! I was anemic when I was little, and they gave me iron on a spoon. That evidently ruined the enamel on my teeth, and I have had nothing but trouble since. I have a few broken fillings, a couple of cracked teeth, and pain in about 5 or 6 spots. Looks like my dentist will be able to afford vacation this summer!

Celiac Disease and Multiple Sclerosis

So here I am, rolling along, albeit at a slow pace, king and master of my universe, secure in knowing I have MS, but that's cool, you don't get more on your plate than you can handle. By the way, what is Celiac disease? I need to know since I'm having a blood test this week to see if I have that too! WHAAAAA? Give me a break, another incurable? I wonder if this could explain why I'm not absorbing the vitamin D? Wait, they aren't going to tell me I'm a 300 lb. CD sufferer, I thought they all got extremely thin? I better not be the one in a million that gets fat!

I was looking over the signs, and I have quite a few of them.

* Recurring bloating, gas, or abdominal pain
* Chronic diarrhea or constipation or both
* Unexplained weight loss or weight gain
* Pale, foul-smelling stool
* Unexplained anemia
* Bone or joint pain
* Behavior changes/depression/irritability
* Vitamin K Deficiency
* Fatigue, weakness or lack of energy
* Delayed growth or onset of puberty
* Failure to thrive (in infants)
* Missed menstrual periods
* Infertility male & female
* Spontaneous miscarriages
* Canker sores inside the mouth
* Tooth discoloration or loss of enamel

Man I can go right down the list, bloating, gas, swelling, and my menstrual cycle, I don't even want to talk about that! I seem to remember someone asking if gluten was something that someone like me should avoid, and how they were pretty sure diet was at the bottom of all of this. Now I'm remembering, it was me! I am going to wait for the blood test to find out what's what, but I'm curious now if this is something that isn't all bundled up in bad tidings?

Since I brought it up before, I had better find out what a gluten free diet actually is. Do I still get to eat meat, vegetables, and fruit? I can handle anything as long as cookies are still on the list, because a world without cookies is just wrong! I've been wanting to eat better, but haven't gotten around to it, is this my nudge? I sure wish my nudges weren't trains coming head on.

Multiple Sclerosis, MS Clinics, and Going Off The Path

There is a pretty good website having to do with MS and diet, it covers a lot of the things that I have either tried, or want to try in the future. Multiple Sclerosis and Dietary Intervention talks about gluten, Swank, even ELISA to check for allergies. There is a lot of information there, but it is something each person would need to try for themselves to see if any of it works. I've got like a bucket list of diet alternatives that I plan on crossing off as I give them a try. I really would like to see more done with looking into a connection between MS and food hypersensitivity, unfortunately nobody asks me for my opinion!

There is a lot to learn, leaky gut, blood brain barrier, the list goes on. The problem I have found is that I seldom, if ever, get the same answer from one neuro to the next. I'm hitting some pretty good hospitals with these neuros too, U of MD, Johns Hopkins, not too shabby. My main guy is at the local hospital, but he has been very good. Franklin Square is also where I had my chemo, a great place for a horrible procedure. I wish I was a kid again and my mother could tell me it would all be OK, and it was.

For now though I must continue on my own way, stopping to get info along the way from people nice enough to share, like wonlife who gave me an idea for the leg cramps, large doses of calcium/magnesium. CMM is my shopping guru, she is telling me where to look, and she stops in on a regular basis, thanks for that. Anecdotal is all I have to go on now, so feel free to share, tell your friends to stop in and info me up, tell everybody, but not that strange guy at work, he will probably find me on his own anyway. Experts don't care much for anecdotal evidence, but they don't have anything better to offer me, so anecdote away!

Multiple Sclerosis, Gluten Free Diet, and Old Friends

I went to the boy's bowling tournament today, because I knew I could just sit, and I could watch him too. I saw a girl I went to high school with, she was there watching her nephew, that was nice. She dated a friend of mine, we played basketball together for years. I asked if the guy had ever put on any weight, he was tall and very thin. She said he hadn't, but he was bald, so that made me feel good! It's good to see people from another time.

Another friend gave me some good intell on shopping at Trader Joe's for gluten free products. She unfortunately has a couple of boys that are in need of gluten free foods and was gracious enough to share some info with me. I'm sure I will be picking her brain for more information, mainly because I really think the key to all of this MS stuff is going to have a food component, and I'm eliminating food theories one by one. Gluten is next on my list, so far Swank and Atkins are no good for me, but onward we go!

The leg cramps are driving me crazy! They are cycling about every minute, or minute and a half in both legs. My legs are just throbbing, like someone has been beating me in my sleep. Everyone here denies having done so, I will have to take them on their word! Everything I read say it may take months, maybe even longer to see benefits from any eating program. That may well be, but I saw problems with the other diets almost right away. I'm just looking to catch a small break, I think I'm due, I can feel it!

Gluten Free, Thanksgiving, and Multiple Sclerosis

We went down to Geresbeck's tonight to do our grocery shopping for Thanksgiving dinner. We are having the wife's family, and my parents for the all day feed event. It's ridiculous how much cheaper grub is at that store. You can find things there they don't make! I was actually able to leave the store without putting one of their eclairs in my basket this time, but it wasn't easy.

We are going to have all the standards, a huge turkey with all the trimmings, kraut with kielbasa, taters, sweet and smashed, stuffing, asparagus, corn pudding, cranberries, rolls, zucchini bread, and gallons of gravy! We even got 2 turkey breast to cook ahead of time so we can slice them for sammiches later in the day. Um, a turkey, stuffing, kraut and cranberry sammich, now thems good eats! There will be pumpkin pies, and mincemeat too, and our pumpkin cake. I can hear myself getting fatter!

Obviously, I'm planning on starting my gluten free shtick after Thanksgiving. I skipped Halloween, not a single piece of candy, not one candied apple or threaded popcorn strands. OK, those last too aren't real big anymore, but not one piece of candy, honest! I figure what's one more holiday going to do, kill me? I sure hope not, but I will keep my fingers crossed! By Christmas I will have everything up and running, and my feast will be a cacophony of glutenless delights! Until then, I pretend.

Multiple Sclerosis, Diet, and Youth Bowling

Have you ever really looked into a gluten free diet? Holy cow, is it complicated! Now I say that, but I haven't been to the grocery store to read labels. You can have bread, but it's made with stuff like tapioca and brown rice flour. Tapioca flour, as in the pudding? Bread means sammiches, so this one has possibilities. Does Weis or Super Fresh sell gluten free bread? I suppose I need to go up and see for myself, sounds like a road trip!

The boy got his info for a list of new tournaments for junior bowling, looks like we are off to Pittsburgh, New York, and I forgot the other places he said. He is thrilled to be bowling right handed again, as are we. I think I'm more excited that we didn't have to buy any new balls for him to use left handed! He has a tournament this Friday and Saturday, another one Sunday, and leagues on both Saturday and Sunday. He also works all 3 days at the bowling alley! I guess we are lucky, we at least know where he is going to be?

The legs are feeling a little better, I do believe the Atkins diet almost killed me! I felt pretty good everywhere, except my arms and legs, oh yeah, and the total loss of energy! I think some of the stuff I read must have been right? Actually almost all of the stuff I read told me higher fat was bad. It also told me that no red meat and extremely low fat would make me feel good. WRONG! I felt equally bad, but in different ways on that one. I'm going to give myself until next weekend to start the no gluten shtick, so pumpkin cake beware!

Multiple Sclerosis, Gluten, and Food Allergies

So, in case it doesn't show, I'm kinda hung up on diet and Multiple Sclerosis. I'm convinced that by taking control of the foods I put in my body, I can in turn take back control of my body. So far I tried the Swank diet, no good, I was always hungry. I tried a modified Atkins diet, it woke up some feeling, the problem is, the feeling is pain! I'm thinking I should have tried a modified Swank? Let's think about this logically for a minute. Maybe the renewed sensation in my legs has to do with the reduction of carbs into my diet. Maybe it's not the carbs, maybe it's the elimination, or at least huge reduction of gluten? What in the hell is gluten?

I've read different things about the evils of gluten in the past, but never really gave it much thought. I happen to be a huge fan of sandwiches, so there is no way bread could be bad for me, what about all of my tomato sammiches? I remember reading this thing about this guy, a fellow MS'er, who was totally out of the game, wheelchair and all. He decided to stop being a "living cadaver" for the doctors to experiment on. The mans name was Roger MacDougall, and he started under the assumption that he was allergic to certain certain foods. It must have worked for him, though he didn't say he was cured, he claimed to be in a "self induced remission."

Is that possible, can you be allergic enough to something to cause MS? I had allergy tests when I was a kid, did they show anything? I had like a bazillion needles, showed allergies to dust, cats and feathers. That was the year, after the tests, Santa brought me my down jacket, thanks Santa! The allergy tests have come a long way, they have one called the Elisa test, it's done off just one vial of blood. Of course like anything else with MS, there is the controversy of the other side of the coin, the side that claims it is just snake oil and smoke. Makes me laugh, how fast something is ridiculous, but how fast they are to tell us they don't know the correct answer.

What to do, what to do, it is quite the conundrum! I can't keep up with the current system, it's killing me. Let us assume that the vitamin D isn't the culprit in the great leg disaster of 2008, what else is different? I said before, I haven't felt good since I stopped smoking, but nobody is buying that the doctor wants me to start again, so scratch that. I'm still taking the Rebif shot 3 nights a week, no change there. The D can cause drowsiness, but I'm not tired. That leaves me with the experiments I have done with diet. Any thoughts out there? I need to figure out just what all encompasses gluten, and how to figure out if I am food sensitive. Any ideas are more then welcome, shoot me a comment if you stop in!