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10 Months Gluten Free And Still Not Recovered


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40 replies to this topic

#31 gf_soph

 
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Posted 29 August 2010 - 06:33 PM

gf_soph, no worries about the post being long. I really appreciate you (and all the others :)) taking the time to share your story and knowledge with me. I haven't heard specifically about the chemicals in specific foods before.

Is it chemicals that occur naturally in the foods or is it pesticides or some such thing? My sister has multiple chemical syndrome, so I am aware very much of environmental chemicals and I know that I react badly to most. I try to eat as organic as possible, but I get the impression that you are talking more about naturally occurring chemicals.

Sarah


yep, i'm talking about natural chemicals - salicylates, amines and glutamates, and while on the elimination diet you also cut out most preservatives and colourings. I recently challenged salicylates, and boy did I react!

Ironically organic foods can be higher in these chemicals - salicylates are like the foods own pesticide, so you get higher leves if the food isn't grown with added pesticides. So if you did have a problems with salicylates, you would probably avoid or limit organic.

If you google RPA elimination diet or failsafe you can find some information about it.
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#32 mushroom

 
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Posted 29 August 2010 - 07:52 PM

One thing that I have realized form my experience is that people who have chronic illness really need people to just be there and support them - just be a friend. I hope that I don't forget that when I start feeling better, because if I know anyone else going through something like this I don't want them to feel alone.



I learned this very valuable lesson when I was practically the only support person for the mother of my best friend who died; my friend's mother was very old, lived alone, had no one to talk to except her cat (thank God for the cat), and as her dementia progressed the important thing was just to have someone to talk to who understood where she had come from and where she was going. It was hard at first because I had to listen to a lot of the stories over and over again, but she never tired of telling them, and had a need to bear witness to what she had suffered, and she had suffered, and the good she had done in her life (and she had done a lot of good). I know this is a little off topic from gluten, but the same principles hold true: we need someone to listen to us and understand. That is why this forum is such a Godsend (and no, I am not a God believer, I use that term loosely in the universal God sense). The ability to be a listener and supporter is probably one of the most valuable functions we can perform. End of tonight's lecture :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#33 gary'sgirl

 
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Posted 30 August 2010 - 06:43 AM

yep, i'm talking about natural chemicals - salicylates, amines and glutamates, and while on the elimination diet you also cut out most preservatives and colourings. I recently challenged salicylates, and boy did I react!

Ironically organic foods can be higher in these chemicals - salicylates are like the foods own pesticide, so you get higher leves if the food isn't grown with added pesticides. So if you did have a problems with salicylates, you would probably avoid or limit organic.

If you google RPA elimination diet or failsafe you can find some information about it.

Thanks for the info!

Sarah
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#34 gary'sgirl

 
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Posted 30 August 2010 - 06:52 AM

I learned this very valuable lesson when I was practically the only support person for the mother of my best friend who died; my friend's mother was very old, lived alone, had no one to talk to except her cat (thank God for the cat), and as her dementia progressed the important thing was just to have someone to talk to who understood where she had come from and where she was going. It was hard at first because I had to listen to a lot of the stories over and over again, but she never tired of telling them, and had a need to bear witness to what she had suffered, and she had suffered, and the good she had done in her life (and she had done a lot of good). I know this is a little off topic from gluten, but the same principles hold true: we need someone to listen to us and understand. That is why this forum is such a Godsend (and no, I am not a God believer, I use that term loosely in the universal God sense). The ability to be a listener and supporter is probably one of the most valuable functions we can perform. End of tonight's lecture :)

Mushroom, reading this brought tears to my eyes - it made me think again of how many people are suffering and have suffered and I am so thankful for the people, like you :) , who are willing to be there for some one in need.

I totally agree - this forum is a Godsend. I have learned so much here and been encouraged by so many - even just reading other peoples posts when I haven't felt well enough to wright myself, has been an encouragement.

Thank you for sharing.

Sarah
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#35 GFinDC

 
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Posted 30 August 2010 - 09:15 AM

Hi Saraha,

One other place to look for problems is vitamin pills and medicines. It might be worth eliminating any vitamin pills for a week or 2 and see if it helps. Medicines of course you can check with the manufacturer for gluten free status. Also any flavored teas or coffees are worth eliminating for a couple weeks to see if it helps. Same with sodas and any alcoholic drinks.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#36 AlysonAnn

 
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Posted 30 August 2010 - 11:01 AM

gf_soph, I would like to know a bit more about what you are eating and what to avoid. I am a new celiac and I am feeing so horrible everyday even though I have given up gluten. Like gary'sgirl, it is all neurological. I notice it is the worst about 30 minutes after I eat. I have been on a diet of fruit, veggies, rice, quinoa pasta, olive oil and water. I have eliminated all of my medication and supplements as well as dairy and soy. The part where you said you curl up on the couch and cry sounds a lot like I feel everyday. I am going to the gastroenterologist tomorrow for the first time, hopefully he will give me some answers to why I am still feeling horrible, however if he doesn't I would like to try the diet that you are on to see if it is in alignment with my symptoms. Thanks for telling your story, it's good to know that there are other people out here who feel the same way that I do. If you could give me advice it would be much appreciated, my dog would appreciate it as well...I haven't walked him for months now :(

Thanks so much!
-Alyson
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#37 mushroom

 
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Posted 30 August 2010 - 11:30 AM

I have been on a diet of fruit, veggies, rice, quinoa pasta, olive oil and water. I have eliminated all of my medication and supplements as well as dairy and soy.


Quinoa is a source of problems for some here on the board - I know, I am one of them. Could you try Tinkyada brown rice pasta instead, perhaps?
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#38 gary'sgirl

 
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Posted 30 August 2010 - 11:32 AM

Hi Saraha,

One other place to look for problems is vitamin pills and medicines. It might be worth eliminating any vitamin pills for a week or 2 and see if it helps. Medicines of course you can check with the manufacturer for gluten free status. Also any flavored teas or coffees are worth eliminating for a couple weeks to see if it helps. Same with sodas and any alcoholic drinks.

Thanks for the suggestions GFinDC. I think I ruled out most of those things, but I probably should double check the supplements in case there is one I missed (I do take quite a few), but I think I called most of the companies already. I better go check...
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#39 ClevelandGuy

 
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Posted 30 August 2010 - 12:17 PM

gf_soph, I would like to know a bit more about what you are eating and what to avoid. I am a new celiac and I am feeing so horrible everyday even though I have given up gluten. Like gary'sgirl, it is all neurological. I notice it is the worst about 30 minutes after I eat. I have been on a diet of fruit, veggies, rice, quinoa pasta, olive oil and water. I have eliminated all of my medication and supplements as well as dairy and soy. The part where you said you curl up on the couch and cry sounds a lot like I feel everyday. I am going to the gastroenterologist tomorrow for the first time, hopefully he will give me some answers to why I am still feeling horrible, however if he doesn't I would like to try the diet that you are on to see if it is in alignment with my symptoms. Thanks for telling your story, it's good to know that there are other people out here who feel the same way that I do. If you could give me advice it would be much appreciated, my dog would appreciate it as well...I haven't walked him for months now :(

Thanks so much!
-Alyson


AlysonAnn, you sound like me. Fatigue/brainfog is my worst symptom. I often feel it worsen 15-30 minutes after eating. I'm gluten-free for 2 months now, still waiting for that miracle change to happen...





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TTg 66, Negative Biopsy.

Trying the gluten-free diet just to see if it helps with my crushing fatigue, and assorted other symptoms.
Full story at savemylyfe.blogspot.com.

#40 gary'sgirl

 
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Posted 30 August 2010 - 02:47 PM

Quinoa is a source of problems for some here on the board - I know, I am one of them. Could you try Tinkyada brown rice pasta instead, perhaps?

Quinoa is definitely a problem for me too.
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#41 gf_soph

 
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Posted 30 August 2010 - 06:01 PM

gf_soph, I would like to know a bit more about what you are eating and what to avoid. I am a new celiac and I am feeing so horrible everyday even though I have given up gluten. Like gary'sgirl, it is all neurological. I notice it is the worst about 30 minutes after I eat. I have been on a diet of fruit, veggies, rice, quinoa pasta, olive oil and water. I have eliminated all of my medication and supplements as well as dairy and soy. The part where you said you curl up on the couch and cry sounds a lot like I feel everyday. I am going to the gastroenterologist tomorrow for the first time, hopefully he will give me some answers to why I am still feeling horrible, however if he doesn't I would like to try the diet that you are on to see if it is in alignment with my symptoms. Thanks for telling your story, it's good to know that there are other people out here who feel the same way that I do. If you could give me advice it would be much appreciated, my dog would appreciate it as well...I haven't walked him for months now :(

Thanks so much!
-Alyson


Not a problem. I am on my lunch break right now, so don't have time to write it out. Instead of adding it to this thread I might start a new one outlining the basics of the diet, look for something about RPA elimination diet. It's much easier for Aussies as our dieticians can access the information about the diet, I'm not sure it's so available overseas.

I will try to write it up in the next day or two.

My dog is loving the diet too, he's been getting 2 walks a day from me where before I was too out of it!
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