hi,
I just joined this group, my sister Jean told me about it. I have not been diagnosed with mc but I have been diagnosed with fibromyalgia. My sister has been extremely helpful and I am now trying a gluten free diet.Has anyone else dealt with this or heard of it?
Patti
new member
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
PattiI am in the MCC group---which kinda gets in Trouble when I STRESS OUT--
There are some foods that *stir-up* things but I know what they are--and actually nothing too drastic--My veggies are cooked to *mush*
I have no problem with GLUTEN---
And I do believe that all the anti-biotics(that I was on for many years) was the cause of my MCC--
Hang in Patti---there will be many peoples poppin in to tell U their issues and how they manage them!!
The info. and friends here are A+--
Happy and a WELLNESS weekend to U
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
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Momster
- Gentoo Penguin
- Posts: 479
- Joined: Sun Jun 05, 2005 10:57 am
- Location: Abbotsford, B.C. Canada
Hi Patti
Welcome to the group.
I'm the Mom of one of the MC group, Peggy. Joined here to be of support and to find out about what she is dealing with.
This is a wonderful, educational, friendly place to come to discuss your health issues, share feelings, and generally learn about many interesting facts. Also, people here care and understand and since I've joined, have a whole new family of caring friends.
I have fibromyalgie also. How did your Doctor diagnose it? It's a very controversial subject and Doctors don't particularly like to deal with it.
I've been doing pretty well with it and found Gabapentin works well for me, but not everything works the same for different individuals. My Doctor just kept trying different things until we found out what worked. When you get a flare-up the best thing to do is listen to your body. If you need to rest, then do it. Fighting with it will just complicate it.
There are some good websites that are very informational and will help you to understand what is happening to you.
Insofar as the gluten free diet, I'm sure many here will jump in to tell you all about it. I think it's very important to be tested for gluten tolerance to know if that's the right path for you to take. At any rate, I am no expert and you will be hearing from others here soon to help you with more knowledgeable information.
Anyway, again, just wanted to welcome you again - it's nice to meet you.
Love - Momster
I'm the Mom of one of the MC group, Peggy. Joined here to be of support and to find out about what she is dealing with.
This is a wonderful, educational, friendly place to come to discuss your health issues, share feelings, and generally learn about many interesting facts. Also, people here care and understand and since I've joined, have a whole new family of caring friends.
I have fibromyalgie also. How did your Doctor diagnose it? It's a very controversial subject and Doctors don't particularly like to deal with it.
I've been doing pretty well with it and found Gabapentin works well for me, but not everything works the same for different individuals. My Doctor just kept trying different things until we found out what worked. When you get a flare-up the best thing to do is listen to your body. If you need to rest, then do it. Fighting with it will just complicate it.
There are some good websites that are very informational and will help you to understand what is happening to you.
Insofar as the gluten free diet, I'm sure many here will jump in to tell you all about it. I think it's very important to be tested for gluten tolerance to know if that's the right path for you to take. At any rate, I am no expert and you will be hearing from others here soon to help you with more knowledgeable information.
Anyway, again, just wanted to welcome you again - it's nice to meet you.
Love - Momster
Do something nice for you today
Patti,I joined the group in February after being diagnosed with mild MC. I was diagnosed with fibromyalgia in 11/04. To be honest, I don't know if I really had/have fibromylagia at all. Overtime, I discovered that 95% of my symptoms were triggered by food; the over ones are common auto-immune symptoms.
As I eliminated potential trigger foods (like wheat and later the other gluten grains) from my diet, my health kept improving. I have multiple, multiple intolerances so it took a full year to sort them out. The majority of my symptoms are in remission as long as I stay away from problem foods.
I just had testing done by Enterolab that confirmed gluten and casein intolerance. This cutting edge approach uses fecal testing rather than blood and is able to detect gluten sensitivty much more accurately than the standard blood test from your doctor. I highly recommend this testing as it can help you identify foods to elimate which will help you get well. I already new that I was gluten intolerant but it was great to get the confirmation. And, the casein intolerance was a suprise. I thought I might have some level lactose intolerance, but not the whole deal.
This is a terrific group of people. Everyone has been so supportive and kind and patient with my millions of questions.
Good luck to you Patti!
Warmly,
Celia
I beleive in magic!
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annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Patti....before long you will have alot of friends that will give alot of info. This is a great site. Everyone is friendly and pretty happy. I have MCC and have learned alot abut food here. Good luck and welcome to our familyHugs Oma
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
Hi Patti,
Welcome to our online family. Yes, many of us here experienced some or all of the symptoms of fibromyalgia, before we started the diet, and we no longer have those symptoms, as long as we are careful about our diet. I believe that you will find significant improvement of your symptoms, if you stick with the diet, and you may even be able to completely eliminate your symptoms.
We are all different, and what works for one of us, will not necessarily work for everyone, but each of us works out our own treatment program, by sharing our experiences, and learning from each other, so that we can fine tune our treatment.
Thank you for joining us.
Wayne
Welcome to our online family. Yes, many of us here experienced some or all of the symptoms of fibromyalgia, before we started the diet, and we no longer have those symptoms, as long as we are careful about our diet. I believe that you will find significant improvement of your symptoms, if you stick with the diet, and you may even be able to completely eliminate your symptoms.
We are all different, and what works for one of us, will not necessarily work for everyone, but each of us works out our own treatment program, by sharing our experiences, and learning from each other, so that we can fine tune our treatment.
Thank you for joining us.
Wayne
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Hi Patti and WELCOME!
You've been referred to THE most helpful site on the web when it comes to colitis and all the other nitnoids that come along with it (including fibro.) if I do say so myself!
This site will give you tons of advice and first hand experience. Search through the site and you will find answers to GF questions and diets, research links and general questions that arise from reading the posts. Just ask away!
Welcome again,
Mars
You've been referred to THE most helpful site on the web when it comes to colitis and all the other nitnoids that come along with it (including fibro.) if I do say so myself!
This site will give you tons of advice and first hand experience. Search through the site and you will find answers to GF questions and diets, research links and general questions that arise from reading the posts. Just ask away!
Welcome again,
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Hi and welcome,
Glad to have your aboard!
My sister also discovered she had the exact same food sensitivies (multiple) as I did before her symptoms got so bad or she developed any serious problems with other AI diseases. Just so happens that we got very similar genes from each of our parents of the type that lead to these particular foods being a problem.
Yep, had the body pain, and all types of it mentioned in the literature -- fibro, arthritic pain and swelling, joint pain, muscle and bone pain (probably osteoporosis was contributing to that), and I almost forgot, I'd had migraines as long as I could remember by the time I got this..
In truth, I didn't care WHAT it was called, just couldn't stand it any longer! These painful things were what I noticed leaving right away once I was really on the diet for real. I'd had body pain for well over a decade, and it'd just been getting worse and worse over the years. Apparently, for me, at least, the body pain and swelling was almost totally related to the gluten, but the diarrhea would return if I had any of the other foods, albeit to a lesser extent.
You have a great authority on food elimination in your sister, Jean, so I know you must be off to a quick start in terms of your knowledge already.
Since my sister lives so close to me, we work together on shopping, recipes, cooking, and restaurants. Mom's got a little more freedom in that gluten is her only food issue, but this way, we can all eat the same way. At this point, it's now more about discovering new things than it is about what we have to leave off -- that part has become routine.
How long has it been since you started the gf part of the diet, and do you suspect that you might have problems with anything else at this point? Do you think you've eliminated ALL sources of gluten at this point? Do you notice any response as yet?
I believe that the degree of response may have something to do with the level and length of time one has had the antigen-antibody reactions and inflammation, but of course, this would vary, all things being equal, due to individual make-up. In other words, comparing yourself to yourself, if you started 5 yrs ago vs starting now.
I would also attempt to eat foods as free of other additives and preservatives as possible.
Are you trying any probiotics at this point?
Best wishes for a speedy recovery however you do it!
Yours, Luce
Glad to have your aboard!
My sister also discovered she had the exact same food sensitivies (multiple) as I did before her symptoms got so bad or she developed any serious problems with other AI diseases. Just so happens that we got very similar genes from each of our parents of the type that lead to these particular foods being a problem.
Yep, had the body pain, and all types of it mentioned in the literature -- fibro, arthritic pain and swelling, joint pain, muscle and bone pain (probably osteoporosis was contributing to that), and I almost forgot, I'd had migraines as long as I could remember by the time I got this..
In truth, I didn't care WHAT it was called, just couldn't stand it any longer! These painful things were what I noticed leaving right away once I was really on the diet for real. I'd had body pain for well over a decade, and it'd just been getting worse and worse over the years. Apparently, for me, at least, the body pain and swelling was almost totally related to the gluten, but the diarrhea would return if I had any of the other foods, albeit to a lesser extent.
You have a great authority on food elimination in your sister, Jean, so I know you must be off to a quick start in terms of your knowledge already.
Since my sister lives so close to me, we work together on shopping, recipes, cooking, and restaurants. Mom's got a little more freedom in that gluten is her only food issue, but this way, we can all eat the same way. At this point, it's now more about discovering new things than it is about what we have to leave off -- that part has become routine.
How long has it been since you started the gf part of the diet, and do you suspect that you might have problems with anything else at this point? Do you think you've eliminated ALL sources of gluten at this point? Do you notice any response as yet?
I believe that the degree of response may have something to do with the level and length of time one has had the antigen-antibody reactions and inflammation, but of course, this would vary, all things being equal, due to individual make-up. In other words, comparing yourself to yourself, if you started 5 yrs ago vs starting now.
I would also attempt to eat foods as free of other additives and preservatives as possible.
Are you trying any probiotics at this point?
Best wishes for a speedy recovery however you do it!
Yours, Luce
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Hi Patti,
Glad to have you aboard. I have not been diagnosed with fibro but I when I was diagnosed with MC, I felt that something was wrong in the aches and pains department. From reading, I felt pretty sure I was developing something along the lines of fibro.
I tried the gf diet more as preventative medicine from what folks here were saying about autoimmune factors, and was pleasantly suprised that the aches and pains improved!
It is a very hard diet and I'm not very good at following it. In fact I'm sitting here with a major crick in my shoulder because I've been at a seminar for two days and ate LOTS of gluten. Waiting for my boyfriend to wake up so he can work some of the kink out.
But its a self induced pain right now, so I can't complain too much about it.
Glad to meet you and look forward to chatting with you.
Katy
Glad to have you aboard. I have not been diagnosed with fibro but I when I was diagnosed with MC, I felt that something was wrong in the aches and pains department. From reading, I felt pretty sure I was developing something along the lines of fibro.
I tried the gf diet more as preventative medicine from what folks here were saying about autoimmune factors, and was pleasantly suprised that the aches and pains improved!
It is a very hard diet and I'm not very good at following it. In fact I'm sitting here with a major crick in my shoulder because I've been at a seminar for two days and ate LOTS of gluten. Waiting for my boyfriend to wake up so he can work some of the kink out.
But its a self induced pain right now, so I can't complain too much about it.
Glad to meet you and look forward to chatting with you.
Katy
Hiya Patti and WELCOME to the party!
Are you the sister of Jean, our multiply-intolerant bird lady here??? So glad you have joined us.
Please tell us more about yourself? How long have you had the fibromyalgia? When did you start the diet? Are you finding the diet difficult? Has your sister been bugging you? LOL!
Looking forward to future chats.
Love,
Nosy Polly
Are you the sister of Jean, our multiply-intolerant bird lady here??? So glad you have joined us.
Please tell us more about yourself? How long have you had the fibromyalgia? When did you start the diet? Are you finding the diet difficult? Has your sister been bugging you? LOL!
Looking forward to future chats.
Love,
Nosy Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Patti,
BTW, my favorite book on gluten intolerance is Going Against the Grain by Melissa Diane Smith. It is well researched and also explains how and why many people can have a problem with non-gluten grains as well. It also delves into food intolerance in general.
Please let it rip with your questions! There's lots of knowledgable folks here.
Celia
BTW, my favorite book on gluten intolerance is Going Against the Grain by Melissa Diane Smith. It is well researched and also explains how and why many people can have a problem with non-gluten grains as well. It also delves into food intolerance in general.
Please let it rip with your questions! There's lots of knowledgable folks here.
Celia
I beleive in magic!