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Frustrated and Need Help!

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Elizabeth
Unregistered guest
Posted on Sunday, August 28, 2011 - 10:04 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Hi All,
I have been browsing this site occasionally during the last month or 2, have learned a lot, and been very overwhelmed. Thank you for all the information.

I am not convinced that msg is my problem, however, I have been more convinced of this than anything else so far, and after taking some time to just monitor what ingredients are in the foods I eat, I have recently eliminated it from my diet, or I think I have. It has been 3 weeks.

I have been surviving mostly on frozen wild salmon (with no additives listed), salads, veggies, and water. After I had a reaction 1 week into this, I eliminated decaf black tea, tomatoes, salted pistachios, cheese, and tomato juice. I then went 2 weeks without a big reaction. And I have now had a reaction again, and feel frustrated. I have recently added in (home-prepared) dehydrated fruit- papaya, mango, banana, whole raw nuts, and fresh lemons and limes. I am sure there may be some other things I am forgetting, but I am really doing my best.

The symptoms I get are: racing heart, thumping heart, shortness of breath, discomfort in my upper abs, dry mouth, tight throat, dizziness, feeling faint, muscle aches, exhaustion, feelings of adrenaline and finally 'panic'. After the initial 2 hours, I 'come down' feeling exhausted, heavy, and depressed.

I am a 40 year old woman in good to decent fitness. I was a community dance instructor and performer, entrepreneur, and wife. These last 2 years have been miserable. I have had some big life changes (moving across the country for husband's job), and ended up in the hospital after one of these 'episodes'. The symptoms had begun prior to this big move though. The cardiologist put me through the tests- and labeled me with mitral valve prolapse, but he told me I was actually there because of "stress".

I proceeded to do whatever I could to 'reduce my stress'. My 'episodes' have made it difficult to have the energy to dance, and my fitness level has been affected, along with my emotional well being, and my perceived physical well being.

I do not want to be 'searching' for what is causing my problems, and sometimes I think I am going crazy. In the past 2 years, I started believing that certain foods seemed to make me feel bad, although I wasn't sure what. Some chocolate seemed to affect me immediately. I suspected that some salad dressings were an issue. I was questioning sugar. I had given up caffeine at the very beginning of my symptoms. Sugar, exercise? Perhaps it is all related to heart problems after all?

I am sorry to be so long winded. I am just so frustrated, and I don't know what to do next. I was really hoping that after a few weeks of an extremely restricted diet, I would start to feel better. But having had a reaction yesterday really has put me into a tailspin. Perhaps it is not msg?

If anyone has any advice, I sure could use it now!
sara
Unregistered guest
Posted on Sunday, August 28, 2011 - 2:49 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I spent months after starting the trial diet (and cheating at times) trying to figure out what was setting off reactions. It is very frustrating. I tried eliminating more and more things.

I think I came up with a better answer for me. I have no idea if it will help with you. Nuts, tea, potatoes, legumes, brown more than white rice all seemed to be triggers for me and they are all reasonably high oxalate containing foods. Most of these are high glutamate too so when I started trying to lessen glutamate I was also lessening oxalate but it wasn't until someone at a burning mouth syndrome said she had relief with a low oxalate diet I went looking. She also had vulvodynia which I also have.

My mind has cleared up a lot this past month or so. My pain is manageable now without Rx meds. My energy levels are up. It isn't all great yet but it is an improvement.

If you are interested check out this site: http://lowoxalate.info/ and there is a yahoo group you can join.


I am still off MSG for the most part, but now I keep track of daily oxalate consumption too. I was able to eat a sandwich from Safeway deli the other day without getting lots of tremors afterwards. This was a big step forward as I have avoided eating out since December.
Elizabeth
Unregistered guest
Posted on Sunday, August 28, 2011 - 3:39 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Thank you, Sara, for your input and story. I will keep in it mind and read up a little on oxalate, which I have never heard of.

Yes, you are right that it is frustrating, and I, too feel like I am eliminating more and more things- and am afraid to eat much of anything. But I am now concerned for not eating enough, and even the thought of eating becomes depressing. And then to not know if eating is even ever going go make a difference anyway...

I appreciate your post. And am glad to hear that you were able to eat a sandwich from the deli- that is definitely a bit step- and I would think it would have been a scary thing to do!

Good luck to you-
sara
Unregistered guest
Posted on Sunday, August 28, 2011 - 4:04 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

It is just we all are different - I went over to the avoiding corn forum on delphi and tried eliminating corn except for the little in meds - didn't notice a big difference but this oxalate diet - it has added onto the steps I made last December when I started Deb's trial diet.

Good luck.
Roy Piwovar
Unregistered guest
Posted on Sunday, August 28, 2011 - 10:03 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Rhubarb leaves are also high in oxalate.

source:

http://en.wikipedia.org/wiki/List_of_poisonous_plants
sara
Unregistered guest
Posted on Monday, August 29, 2011 - 7:49 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

oh yes - just those were the higher oxalate foods I was eating - I pass on rhubarb as well as beets - carrots I have avoided too and they are not as high as a baked potato but higher than I was handling

I am trying to pick fruits and veggies right now based on oxalate content - cherries and watermelon are pretty low compared to other things

we each have to solve our own mystery - MSG was only part of my problem - I still have some pain and lots of mucus /stones which I think are from above tonsils and below the Eustachian tube opening - I saw 2 ENTs this summer and didn't get anywhere with either one of them but by then with the diet - MSG and lower oxalate - (and cheating on it too) I was able to get enough pain relief to actually start to function for the first time in 4 years.
Di
Unregistered guest
Posted on Monday, August 29, 2011 - 1:21 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Isn't it a shame that almost all doctors are taught what big pharma dictates and that we, as lay people, have to spend years diagnosing and figuring out how to treat ourselves?
sara
Unregistered guest
Posted on Monday, August 29, 2011 - 3:08 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

yeah Di

$740 billed by the two ENTs - that isn't the contract price but still ----

and in addition there was dealing with the PCP (new one) to get the referrals and her bills and labs for initial appt etc

neither of these ENT's even suggested any Rx or testing (except one did a endoscope) which I found amazing - they didn't have answers what was going on, didn't want to find out, and didn't try to push off some phony treatment to placate me
Debbey
Unregistered guest
Posted on Tuesday, August 30, 2011 - 11:41 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Elizabeth hang in there
I am a twirling coach and used to ride horses
I understand your frustration
the people on this website saved my life
everything I ate/everything I did had to be reworked plus I cannot eat sugar and have mitral
think of it as choreographing a routine
finding the perfect combinations for the dance
and you can do it/especially if you understand that sometimes you have to change the dance to fit the stage.
read everything you eat
veggies I do better with frozen-they spray alot of fresh ones to make them look prettier
potatoes tend to absorb toxins buy organic only
look for cheese made with rennet (denmark-gouda havarti)
all store bought salad dressings have msg
coffee-decaf anything I react to the process
starbucks is deadly
milk use whole milk (ultrapasteurized or low fat forms msg in process too)
sometimes limes amd lemons are sprayed
use organic olive oil and there is a great recipe on this site for ranch made with Daisy sour cream. :0
i eat organic rice but I am brand sensitive
eggs are happy-cook in olive oil
is your salmon color enhanced
are you on medicine for mitral valve?
I had to change my time of day so I would not feel like a slug
watch your skin creams shampoo toilet paper too
It all gets better when you find the right combination :-)
Di
Unregistered guest
Posted on Saturday, September 03, 2011 - 6:42 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Debbey, That's interesting about doing better with frozen veggies because fresh ones may be sprayed. And I love your take on choreographing a routine....change the dance to fit the stage.
LisaS
Unregistered guest
Posted on Wednesday, August 01, 2012 - 7:05 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Sara, I was wondering if going low oxalate has helped you?

I have recurring joint pain and someone posted that it could be from oxalates. Then I saw that oxalate and sulfite metabolism is linked and I've been reacting to sulfites. Plus I've been eating a lot of oxalates lately, and my pain is really bad...it's worth I try (and better than the only other option I can come up with, autoimmune disorder).

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