SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
NEVER EVER AGAIN...........WILL I STRAY
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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NEVER EVER AGAIN...........WILL I STRAY

from my GLUTEN FREE DIET.

I was persuaded by my hubby and my personal assistant to go out last night to hubbys xmas dinner. I got dressed up a bit, and off we went for 7.30 sitting.

Because i hadnt pre ordered my meal i had to have what was left.

So i had, salmon and prawns with mayo and bread to start, roast beef and yorkshire pudding, gravy and veg, and a cheese board.

I was good and did not eat the bread on the first plate but ate the mayo sauce with the fish.

I should not be eating red meat, but i wont waste food, so i ate some, i avoided the yorkshire pudding, but had gravy.

I ate ONE cheese biscuit and a bit of cheese as again i didnt want to waste the food.

OMG we got home at 10pm and my stomach was hurting so much i thought i would pass out. I had to run to the toilet 3 times.

NEVER AGAIN.

I have had a truly horrible night, indigestion, feeling sick and bloated and i have a grumbling stomach still.

I have been following the MS recovery diet and everything i ate last night was a no no....and also it had gluten in it.

After 2 months following my burning in my right leg had gone, but even that was back last night with a vengeance.

It just goes to show we can be sensitive to things without even knowing it. I now know i am sensitive to gluten because before i started my diet i had these symptoms, bloating, pain, and rushing to the loo, but have not been there for several weeks.

NEVER AGAIN lol..........I shall be a good girl...... no more junk lol. xxx Zel
Tags: MS RECOVERY DIET., gluten free
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5 Comments
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956292_tn?1334058469
Hello,

Foods that upset us are always good going down but no fun afterwards....I have not tried that diet you speak of but a little birdie told me about it and I will look at it once I get a chnce..ugggg

I hope things have simmered down for you...I hate it when my belly starts to "roar". It's like I can run to the bathroom fast enough...literally within seconds of eating..I am off to the "throne"...

Jibs
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1530171_tn?1418143903
Hi Ladies.
It is unfortunate that you have to go through life with all those limitations.
However, looking back at my own daughter's life since 2 years ago, she
has endured the unendurable (almost).
After the medical -so called health care-system failed her miserably
(her own doctor NEVER took her seriously! Never agreed to have any test she had asked for and...)
To make a long story short, as her health was deteriorating rapidly and getting much worse in the hands of doctors, decided to take the holistic route, counting on her parents support, our combined knowledge and experience (her mom is a dietician, she's herself presently a Holistic Health practitioner -she just graduated- and I'm a "Jack of all Alternative and Holistic Therapies") and naturally her own determination to reclaim her health and her life back. She also consulted a Naturopathic Doctor and used her as an extra health coach.
She started a combination of the SCD program and an Anti-Candida diet.
Extremely strict regimen allowing her to consume only certain vegetables, fish, pastured meat and chicken. Olive oil -fresh only- and a lot of coconut
oil raw or for cooking to replace carbs for energy- it does not get treated as fat in the body but as an immediate source for energy without putting any
strain in the pancreas and it is a great Anti-fungal agent also!
She has managed to stay with this diet for 2 years and now her life has become functional again.
Her symptoms before (never had a diagnosis) were: Mental fog, memory problems and lapses, headaches, chronic fatigue, lethargy, confusion,
depression, insomnia, abdomonal pains, indigestion, heartburn, diarrhea,
constipation, irritability, panic attacks,bloating, vomiting, body aches,migraines and on and on.
It had come to a point in her life that she was afraid to leave her apartment
just in case...
Her symptoms would come and go constantly!
Within a few weeks into her strict program she started feeling better.
Nutritional supplements and Probiotics, Meditation, EFT, deep breathing techniques, light exercise, Reiki and Hypnotherapy all contributed to her remarkable improvement.
She's now a happy young lady, full of energy and brilliant ideas of how to make our world a better place!
She's not out of the woods yet. Some symptoms are still around-less intense and much less frequent.
So the diet has to stay . That means NO restaurant food, no dinner parties, no take out,no pizza with friends, no dessert, no pastas, no travelling far away. But for her it is a very small price to pay for the freedom to go out and enjoy a stroll in the park without worrying if she will make it to the nearest W.C., or to take the subway and visit a friend without worrying about a panic attack.
And all this without medical doctors or medications!
It reminds me of my own life in the past in a way-feels like a different lifetime- Am I getting that much older or do I simply want to forget?
So much for making the story shorter!
Blessings,
Niko




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Avatar_f_tn
hello, ladies,

there is a genetic test that can be done to see if you're carriers of the celiac disease genes.  can either one of you persuade your docs to order it for you given the fact that you respond so immediately to gluten?

also, there is a woman that actually contacted me on this board when i first got acutely ill nearly 3 years ago who told me to look into celiac because of my neuro symptoms.  she has a web site:  jccglutenfree *******.  she has lots of excellent articles about the neurological implications of celiac/gluten sensitivity.

tweet tweet.

oxoxxo
binx/IWC
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551343_tn?1350880995
Hi it sounds as though your daughter is suffering from Leaky Gut Syndrome. A very very undiagnosed illness that can cause massive problems in the body.

http://www.************.com/blog/leaky-gut-syndrome/

I am so glad your daughter is on the right road now and is having some success in living as normal life as possible.

I feel better this morning myself as yesterday I just rested, but my symptoms had gone haywire even my fatigue was back....

I shall be a bit more careful in future what I eat that is for sure.

illwithoutacuase.....

One of my cousins in Italy has celiac. I think in the new year I might see my GP and ask her if they can test me to see if I am a carrier....

FINDING gluten free foods is the real challenge lol. Mariaxxxx
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Avatar_f_tn
dear maria,

i am a carrier of one of them, and had a reaction to gliadin in a saliva test, but not through serum.  even so, i figure it can't hurt to eliminate gluten, but, you're right--it is a serious challenge to ensure that everything we eat doesn't have gluten in it.  even ketchup and soy sauce have wheat in them, but i have found products here in the u.s. that are gluten free.  it does take some searching, but i don't know what the availability is like in your area.

re: MS recovery diet--i am having the hardest time not eating eggs and legumes.  like i said before, those were my primary sources of protein since i am not a meat eater in general.  and my mercury level is crazy high, so i've tapered off of fish.

ugh.  this is not fun, especially around the holidays.  i went to my husband's holiday party the other evening and ate salad and some veggie items supposedly made with only corn flour, but i felt horrible the next day.  

blessings to you
xoxox
binx/iwc
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