Improving Trend

Specific Illnesses & Conditions VM/MAV
#1

At the risking of “jinxing” it, I believe I’m seeing an improving trend. Although I still have an tendency to develop tension in my head and disequilibrium as the day progresses these sensations do seem to be lessoning in intensity. Also the episodes of vertigo seem to be becomming less acute. The last couple I’ve had were mild enough that they probably shouldn’t even be called vertigo as there was never any “movement” of objects in my visual field The term dizziness is probably better. These episodes are also becomming shorter in duration - a minute or two - as opposed to 5 to 10 minute episodes that I was having previously.

So what do I attribute this to? First I’ll say it is hard to tell because it seems that I don’t get immediate feedback from anything I do. Rather, any change I make (ie diet, exercise, medication, etc.) must be maintained for a period of months before I start to see a change. Having said that here is what I’m doing now: Verapamil (120/day - I’ve been on it for 17 days now), cardiovascular exercise (30 min/day - 4 days per week - for the past month), migraine diet (past two months).

As to which of these things is responsible for the improvement, I’d guess its a combination. For now I’ll continue doing all three and see if this trend continues. Perhaps if I can ever really get this under control for any length of time I’ll experiment a bit a see if I can pin it down. For now I’m just thankful that things seem to be moving in the right direction.

Chaz :slight_smile:

#2

Glad to hear your good news (at the same time - jealous). I’m still amazed to hear anyone can actually follow that stupid diet. Guess it amounts to self-control - there was a time when I thought I had lots of that.

#3

Well I wouldn’t say I’m following it perfectly. I have the most trouble with spiced meat and cheese. On the other hand I’ve completely elimated coffee (occcasionally a cup of decaf), chocolate, alcohol, nuts, citrus fruits, bananas and MSG (assuming I actually know it has MSG in it). It would be so much easier if you could actually see a cause/effect relationship between eating somthing and the symptoms. In my case its not like that at all. But, after two months on the diet somthing does seem to be helping so I gonna stick with the diet.

Chaz

#4

Yeah, I guess if I can get off my pity party long enough, I will admit that cutting out coffee has helped. I stopped all processed meats (‘lunch’ meat, hot dogs, sausage, etc.) & artificial sweeteners - those were easy. It’s the MSG thing that has me messed up. If the label doesn’t list “MSG”, apparently the food can still contain it. That’s where I have the most trouble. Well … that, & my inability to *completely *stay away from the occasional cup of coffee or piece of chocolate. I do real well for a while, then BANG, I just have to have a cup or a candy bar … then I start feeling awful & typing these incredibly tedious, tear-filled, self-centered, depressing messages with lots of dots in them … :roll:

#5

Chaz, that is GREAT! And i’ll bet you’re right, it’s the combination of things.

The thing about the food triggers is that it can take days before it has an effect, and it can take months before the trigger leaves your body. With me, my food trigger has always been felt the next day, but I believe it is Buccholz who claims that it can take 2-3 days.

I am so happy for you - you’re doing great! There are success stories, guys! JH and Hain can’t be claiming 80% effectiveness of their preventatives for nothing, right? (?) At least I hope not.

Be well,

Julie

#6

Hi Chaz,
while on the gluten free diet,
I also looked out for msg,being that its almost all gluten.
reading lables became my life.
here is some info on it.
msgmyth.com/hidename.htm
:stuck_out_tongue:
jen

#7

— Begin quote from "jennyd"

Hi Chaz,
while on the gluten free diet,
I also looked out for msg,being that its almost all gluten.
reading lables became my life.
here is some info on it.
msgmyth.com/hidename.htm
:stuck_out_tongue:
jen

— End quote

Hmmm, no, MSG is just sodium and glutamic acid, but it might be created from gluten. Although seeing how most celiacs have no problem with it I doubt it’d contain any more than tiny, tiny traces of gluten. :slight_smile:

#8

Tranquillity.
MSG (Made outside USA can be made from wheat. US MSG usually from corn))
I dont understand the mechanisim.
but they say to aviod MSG at all costs if you’re a celiac.
and even a tiny trace can eventualy kill a person with Celiacs.
I’ll try and find some more info about it.
jen

#9

Jen, my older daughter has celiac: she subscribes to a database from clanthompson, where this woman, Lani Thompson maintains a database of gluten free foods for celiacs. Helps with the grocery list.
clanthompson.com/index.php3
Her fiance’s family is Chinese, and his mother–a PhD in cytogenetics–keeps yelling at her to eat the food they make with msg and soy sauce, saying “It’s not like a peanut allergy, it won’t kill you!” Needless to say, when in town, they stay with us.
They’re getting married in 2 weeks, and it’s been a rough time for me, I had to have some semi-emergency surgery last week and face further treatment, but I’m healed enough to be at the wedding and the caterer and wedding cake guy are all doing the gluten free meals. But, there is the Chinese banquet three weeks later-and all she can eat is rice. And with the banquet likely liberally dosed with msg, that’s probably all I’ll be eating…
Kira

#10

Hi Kira,
I’m sorry you’ve had a bad week, hope things get better.

I was always told to stay away from MSG but for the life of me" I cant find that article again"
I know that anywhere outside the US it has wheat in it in some form?

Tranquility is right about MSG “not being wheat”
And I don’t know why they say to avoid it.
Maybe it’s due to the processing.

Celiacs Can eventually die from the smallest amount of gluten entering their bodies, Due to atrophy of the villy in the small intestine.
There for, their bodies starve of all nutrients ect.

Causing, such things as colon cancer, cerebellum atrophy, causing ataxia, (balance and cognitive issues) and migraine are predominant with celiac disease.
Ect.

When I went looking in oz for soy products, I couldn’t believe how many had been processed with wheat, even some soymilk.
Most vinegar is a no no.
Soy sauce often has wheat in it; you just have to become proficient at reading labels.
A lot of products are processed on the very same conveyer belts in factory’s are laden with wheat dust.

Some product aren’t gluten per say, but wheat is used to enhance flavor by running wheat through them after processing to add flavor.
It’s been so many years since giving up the gluten free diet, I cant remember most of what I’ve learned as my memory is shot form this damn illness.

Anyway, there was a story of a nun who had celiac she started a very strict gluten free diet.
After months her Dr checked her glaidin levels and found some how she was still ingesting gluten. She promised she hadn’t cheated on the diet, and lets face it who? would doubt a nun. A few months later they checked again and her levels were still up.
She was beside herself as to what was causing this.
So her Dr got her to keep a dairy of her weekly events.

To cut a long story short.
It was the once a week tiny communion wafer that was found to be the culprit.
Not very much gluten in communion wafers hey?
But enough to eventually kill her.

But anyway, MSG is bad for everyone. And better off without it.

all the best Kira,
jen

#11

Thanks Jenny–it’s been a rough couple of weeks. Scary stuff, so all good wishes are appreciated.
Re: celiac–my ENT tested my younger daughter for it, because she has MAV (he’s a smart guy), she was negative. My older daughter developed severe asthma from a moldy dorm room in college (first week of sophomore year: “Mom, I spent the night in the ER…”) and was found to have IgA deficiency (strong association with celiac and asthma and recurrent respiratory infections), so I had her tested when she always complained of stomach pain, and most the tests are IgA (endomysial, tTG) but her IgG gliadin was sky high. She refused the biopsy and just went gluten free.
They do make gluten free communion wafers now. (Not that we’re Catholic.)
I’m sure, no matter how careful she is, that there is still gluten in her diet.
Interestingly, I realized that without fortified wheat flour she needed multivitamins, and vitamin D–and she and her fiance feel so much better on the extra vitamin D (1000 u/day)
Her asthma is totally stable at this point.
I’m making a slow, but steady recovery, and at least I’ll be able to be at her wedding. Got some good news from the surgeon, and at least my daughter doesn’t have to be doing the guilt thing–how can I feel happy when mom is sick? Like it’s a zero sum game.
Kira

#12

Kira,
Just a quick note to say I’ve noticed your absence from the board in the last few days and actually thought you’d improved and were out doing your thing with life. I’m sorry that it’s actually been a case of you not feeling at all well and I wish you much continued improvement. How far till your daughter’s wedding, I’m wishing you much wellness from all the way accross the Pacific Ocean straight to you! You’re contribution to this board through your knowledge and it appears, so much first hand experience is very valued.
Good health and wishes to you :stuck_out_tongue:
Judy

#13

Thanks, it’s two weeks away. I was out and about today, which felt really good, things seem to be on the right track.
Thanks for the best wishes across the Pacific.
Kira