Per a conversation I had with a caring EnteroLab consultant, I was directed to the website: http://www.celiacsupportgroup.org . From there, I did a search and located a support group near me, in Sacramento, CA. There is a meeting coming up on August 14, and I plan to go! They make it very clear that this is a group for celiacs and "non-celiac gluten sensitives"! How wonderful to be "recognized"! What a great feeling to have this to look forward to ... a presentation, plus time to meet with others, to share information and connect, just as we do here, except in person! If anyone is interested, I will update the board with details about the meeting!
The purpose of this post is to let others know that this may be a resource for you, too. I spoke to one of the organizers of this group on the phone, and she was so nice! She has been celiac for 32 years, and her husband is gluten, casein and beef intolerant. Her children are non-celiac; however, her grandchildren have tested positive for celiac. She used to host meetings in my county (for 30 years) but no longer is able to do so. She told me she knew of several people in the Sacramento group who were similar to me; many food intolerances, not diagnosed with celiac disease, etc. She knew all about EnteroLabs, and had heard Dr. Fine speak! She was able to recommend to me local GI doctors who were knowledgeable about food intolerances, and provided me with this website to look up gluten content in medications: www.glutenfreedrugs.com . (You may already know about this.)
As we grow the Microscopic Colitis Foundation, I think it is a good thing to join with other, related groups; to share information, educate each other about our health conditions and solutions, and provide support/awareness on the local level.
~ Holly
Excited about Upcoming Celiac Support Group Meeting!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Excited about Upcoming Celiac Support Group Meeting!
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
Holly,
FWIW, for decades most celiac groups looked down their noses at "undiagnosed celiacs" who claimed to be gluten-sensitive. They treated us like the proverbial red-headed stepchild. Now they are doing an about face because researchers have finally gone to the trouble of proving that non-celiac gluten sensitivity actually does exist.
Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of coeliac disease
Tex
FWIW, for decades most celiac groups looked down their noses at "undiagnosed celiacs" who claimed to be gluten-sensitive. They treated us like the proverbial red-headed stepchild. Now they are doing an about face because researchers have finally gone to the trouble of proving that non-celiac gluten sensitivity actually does exist.
Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of coeliac disease
Tex
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.
Hi Tex,
Yes, I sort of picked up on those vibes in my research. That's another reason I wanted to post this. My hope is that the Sacramento group will prove this newer, open-armed approach is really true, and true for more and more chapters world-wide every day. IMO, we need each other; we can all learn from each other.
I don't know what the relationship is with MC'rs and Ulcerative Colitis, or Crohn's Disease. Since yours is the only site I've seen showing more than the LC and CC forms of MC, it would appear there is still so much education to be done, starting with the GI doctors and communities themselves.
~ Holly
Yes, I sort of picked up on those vibes in my research. That's another reason I wanted to post this. My hope is that the Sacramento group will prove this newer, open-armed approach is really true, and true for more and more chapters world-wide every day. IMO, we need each other; we can all learn from each other.
I don't know what the relationship is with MC'rs and Ulcerative Colitis, or Crohn's Disease. Since yours is the only site I've seen showing more than the LC and CC forms of MC, it would appear there is still so much education to be done, starting with the GI doctors and communities themselves.
~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
My experience previously has been that people (general population and celiacs) struggle to accept that you can have multiple major intolerance's like most MC'ers do, ie Soy, Dairy, Eggs etc and with recent media about gluten free eating being a fad, that we are contributing to some of that negativity.
I really hope you enjoy it and meet great people.
my suggestion is, go with no expectations, clear mind, and see what happens.
(ie no expectations, minimal risk of disappointment)
I really hope you enjoy it and meet great people.
my suggestion is, go with no expectations, clear mind, and see what happens.
(ie no expectations, minimal risk of disappointment)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Gabes,
I appreciate your comments and it feels good that my MC family wants to protect me! The good news is that I have spoken directly to Kathe Hughes, and she is forwarding my phone and email info in advance of the meeting to a couple of members of this Sacramento chapter who apparently have multiple food intolerance issues (without being "celiac") like I do. She's been in the celiac community so long that she knows most people in the area. (Plus, she knows all about Dr. Fine and EnteroLabs, and about non-celiac gluten and other food sensitivities.)
Where I struggle the most right now is socially. When I'm at home, doing my thing, cooking, eating and supplementing to the best of my ability, and connecting to this board, I feel safe. Where I feel the stigma is going out. Because of course you and Tex are right! The way I express it to people is that there are some folks who are choosing to eat "vegan", or "vegetarian", or "gluten-free", or what have you, and I respect their right to choose. In my case, I explain that I have a medical condition and MUST avoid everything that sets off my auto-immune responses, which includes a large variety of foods right now. I explain that I don't HAVE a choice. That is the difference.
Some people "get it", some don't. We can't worry about the ones who don't. But I feel it is important for those of us now and the MC'rs who will follow, to "get the word out" as much as possible. So my expectations for the meeting are to enjoy being out socially and not worrying that nobody else has a food intolerance (even if it's "just" gluten); to enjoy listening to the program and speaker, whatever the topic; and to learn as much as I can from everyone there. Should I be fortunate enough to find those people who are "like me", I'll be thrilled. Even if I don't, I know there ARE "people like me". And I will then return home and back safely into the arms of my MC family here!!
I will report back. Thank you again for all your support!!
~ Holly
"To see the change, you must be the change." Ernest Holmes
I appreciate your comments and it feels good that my MC family wants to protect me! The good news is that I have spoken directly to Kathe Hughes, and she is forwarding my phone and email info in advance of the meeting to a couple of members of this Sacramento chapter who apparently have multiple food intolerance issues (without being "celiac") like I do. She's been in the celiac community so long that she knows most people in the area. (Plus, she knows all about Dr. Fine and EnteroLabs, and about non-celiac gluten and other food sensitivities.)
Where I struggle the most right now is socially. When I'm at home, doing my thing, cooking, eating and supplementing to the best of my ability, and connecting to this board, I feel safe. Where I feel the stigma is going out. Because of course you and Tex are right! The way I express it to people is that there are some folks who are choosing to eat "vegan", or "vegetarian", or "gluten-free", or what have you, and I respect their right to choose. In my case, I explain that I have a medical condition and MUST avoid everything that sets off my auto-immune responses, which includes a large variety of foods right now. I explain that I don't HAVE a choice. That is the difference.
Some people "get it", some don't. We can't worry about the ones who don't. But I feel it is important for those of us now and the MC'rs who will follow, to "get the word out" as much as possible. So my expectations for the meeting are to enjoy being out socially and not worrying that nobody else has a food intolerance (even if it's "just" gluten); to enjoy listening to the program and speaker, whatever the topic; and to learn as much as I can from everyone there. Should I be fortunate enough to find those people who are "like me", I'll be thrilled. Even if I don't, I know there ARE "people like me". And I will then return home and back safely into the arms of my MC family here!!
I will report back. Thank you again for all your support!!
~ Holly
"To see the change, you must be the change." Ernest Holmes
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
holly
one explanation i have used for laypeople, people that dont have medical issues, is that those ingredients (soy, dairy, etc) are like a poison to my body. and ask the person, would you willingly drink poison?
what i found was, in the early days there is lots going on with figuring out safe eating plan, making various lifestyle adjustments, etc working through the mental and emotional aspects of acceptance, etc it was good to hibernate a bit as I sorted out my stuff
once you are in the flow, have your safe meals, routine etc, that zone of 'not overthinking everything' and enjoying life, it is much easier to socialise.
I have my adjusted recipes for safe cakes and treats that I can take with me.
and when you are in this 'flow' that is when you find akin type people that come into your life. They may not have MC or an IBD, but they are proactive about eating plan and lifestyle to optimise health, they are proactive about functional health and practitioners etc
this analogy is on a magnet on my fridge
Happiness is like a butterfly: the more you chase it, the more it will elude you, but if you turn your attention to other things, it will come and sit softly on your shoulder.
I am smiling as I type this, as your posts sound like me 6 years ago when I first joined the board...
part of my MC journey was the gift of learning to go with the flow, rather than chase things, i learnt to embrace things as they appeared...
one explanation i have used for laypeople, people that dont have medical issues, is that those ingredients (soy, dairy, etc) are like a poison to my body. and ask the person, would you willingly drink poison?
what i found was, in the early days there is lots going on with figuring out safe eating plan, making various lifestyle adjustments, etc working through the mental and emotional aspects of acceptance, etc it was good to hibernate a bit as I sorted out my stuff
once you are in the flow, have your safe meals, routine etc, that zone of 'not overthinking everything' and enjoying life, it is much easier to socialise.
I have my adjusted recipes for safe cakes and treats that I can take with me.
and when you are in this 'flow' that is when you find akin type people that come into your life. They may not have MC or an IBD, but they are proactive about eating plan and lifestyle to optimise health, they are proactive about functional health and practitioners etc
this analogy is on a magnet on my fridge
Happiness is like a butterfly: the more you chase it, the more it will elude you, but if you turn your attention to other things, it will come and sit softly on your shoulder.
I am smiling as I type this, as your posts sound like me 6 years ago when I first joined the board...
part of my MC journey was the gift of learning to go with the flow, rather than chase things, i learnt to embrace things as they appeared...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
There really are times when I wish I had a face I could sit down with and we could exchange how being where we are in life and how it makes us feel would be nice.
I guess I'm not ready to 'not' be able to talk about this...and I just realized that I had a very sad moment on Sunday not knowing if I'd ever be able to visit, support, express myself, ask questions and just plain vent again with all you wonderful people who understand where we are coming from and hence there are no expectations, just kind replies and a support mechanism like no other I have experienced.
Kudos to you Holly for getting excited about something simple, but potentially interesting and maybe even have the chance happening of meeting someone Like Wise.
Hugs
Erica
I guess I'm not ready to 'not' be able to talk about this...and I just realized that I had a very sad moment on Sunday not knowing if I'd ever be able to visit, support, express myself, ask questions and just plain vent again with all you wonderful people who understand where we are coming from and hence there are no expectations, just kind replies and a support mechanism like no other I have experienced.
Kudos to you Holly for getting excited about something simple, but potentially interesting and maybe even have the chance happening of meeting someone Like Wise.
Hugs
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
I look forward to your update, Holly. While this group is awesome and wonderful to "talk" to, it would be so nice to meet someone on the same journey as I am. I hope you have a great experience! Gabes, I love the quote on your magnet.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
.jpg){kind=avatar}
What I have decided is that if the situation seems to warrant it I will say that there are a lot of foods that make me very sick so I have to avoid eating them. I have been eat this way strictly for over 4 years now but even before that I was eating low carb paleo so I am used to going against the grain when it comes to food. I have got to the point that I am so confident that I am doing what is right for my body that I don't really feel I need the support of others. I do what I know I need to do for myself and if it bothers someone so be it. That's their problem. In truth I don't get much flack from anyone. I have come to terms with how I eat. In fact not only have I come to terms with it. I feel that I am very lucky. I eat an incredibly healthy diet that is benefiting me in so many ways. I feel bad for people whose diets are so much less healthy and who eat foods that are most likely hurting them rather than healing them. It is possible to consider MC a gift when it leads to the kinds of health benefits that I have experienced.
Jean
Jean
Hi Holly,
I went to probably 6 meetings of our local group. It was a positive experience. Many of the members had a large number of food intolerances, i.e. gluten, dairy, soy corn etc. Multiple food tolerances seemed common. The best part was feedback on which local restaurants were best for us. My town also has a very active local facebook group (which I'm not on but the boyfriend is) which is helpful for local restaurants. I found the group very welcoming.
At the local group I met the second African -whoops this guy was not African American but African that I know who is gluten intolerant. His story was interesting. In his country gluten is rarely eaten. He came to the US and got desperately sick. It took a long time for the local hospital to diagnose him as gluten intolerant.
The other good thing was I found the group was a really good source for local doctor referrals.
I went to probably 6 meetings of our local group. It was a positive experience. Many of the members had a large number of food intolerances, i.e. gluten, dairy, soy corn etc. Multiple food tolerances seemed common. The best part was feedback on which local restaurants were best for us. My town also has a very active local facebook group (which I'm not on but the boyfriend is) which is helpful for local restaurants. I found the group very welcoming.
At the local group I met the second African -whoops this guy was not African American but African that I know who is gluten intolerant. His story was interesting. In his country gluten is rarely eaten. He came to the US and got desperately sick. It took a long time for the local hospital to diagnose him as gluten intolerant.
The other good thing was I found the group was a really good source for local doctor referrals.
Awwww .... thank you all so much for your comments and support. Gabes, Tex, Erica, Marcia, Jean and Brandy, you've all generously shared some very personal things with me such as your wishes/dreams; your valuable insights / experiences dealing with social situations with MC; how to become mentally tougher; how to be kind to yourself and allow that important "quiet" time to heal physically, mentally and spiritually; what benefits you've experienced attending such a group, and more. All of which makes me feel very cared about here, and encouraged!
Every situation is different. For me, I live alone (3 cats) and have little family left. During the 6 months before and of course during the initial stages of being diagnosed with MC, I became QUITE the hermit! Finding this board has been such a blessing. We all need human contact and interaction. Becoming a bit more social is something that I truly feel is part of my healing process. I'm fortunate in that the little work I do is from home, and I only have to take care of myself, so when I'm tired (doesn't take much!), I can just chill and rest at home.
Lately, I find my posture is terrible (it's always been very good before) and I have to continually make an effort to sit or stand up correctly. Has anyone else experienced this? Is it part of the overall fatigue that comes during the healing phase of MC? Or is this symptomatic of something else?
Again ... thank you!!
~ Holly
Every situation is different. For me, I live alone (3 cats) and have little family left. During the 6 months before and of course during the initial stages of being diagnosed with MC, I became QUITE the hermit! Finding this board has been such a blessing. We all need human contact and interaction. Becoming a bit more social is something that I truly feel is part of my healing process. I'm fortunate in that the little work I do is from home, and I only have to take care of myself, so when I'm tired (doesn't take much!), I can just chill and rest at home.
Lately, I find my posture is terrible (it's always been very good before) and I have to continually make an effort to sit or stand up correctly. Has anyone else experienced this? Is it part of the overall fatigue that comes during the healing phase of MC? Or is this symptomatic of something else?
Again ... thank you!!
~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Holly
dont laugh when I reply 'magnesium'
nervous system health, lung health, energy, tendon and collagen health is linked to magnesium
the other aspect to 'body strength' is home made bone broth - the amino acids, collagen, minerals etc
http://articles.mercola.com/sites/artic ... rfood.aspx
you dont have to drink it straight, just incorporate it into your meals
boil veges in it, makes soups and stews with it, etc
the other contributor is reducing in inflammation (which you are doing via the eating plan and reducing exposure to toxins)
dont laugh when I reply 'magnesium'
nervous system health, lung health, energy, tendon and collagen health is linked to magnesium
the other aspect to 'body strength' is home made bone broth - the amino acids, collagen, minerals etc
http://articles.mercola.com/sites/artic ... rfood.aspx
you dont have to drink it straight, just incorporate it into your meals
boil veges in it, makes soups and stews with it, etc
the other contributor is reducing in inflammation (which you are doing via the eating plan and reducing exposure to toxins)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Well, I AM laughing, Gabes!! And certainly not surprised. It is just so helpful to receive confirmation and to know others have experienced or recognize some of these "weird" symptoms. And, believe it or not, it's close to 100 degrees outside today but I am making my first batch of ... BONE BROTH!!!! 
~ Holly
~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
in the hot aussie summers, I do the my bone broth first up in the day (ie start it at 6am) and use a camping gas stove and let it bubble away outside
(no heat or smell in the house)
I know money can be tight with what we are dealing with, but I found a fantastic chiropractor practitioner (who is super knowledgeable in cell health/biochemistry/methylation etc)
they had a fantastic diagnostic tool that can assess nerve health along the spine, where the trouble spots are spine wise and spinal cord wise.
they have been treating me functionally and over the 6 months my posture has improved.
the treatments are not just chiropractic adjustments, it is supporting the body while it clears toxins, and minimising inflammation.
(things like vagus nerve stimulation etc http://www.healthline.com/human-body-maps/vagus-nerve )
things like Acupuncture are also fantastic for this - it wont cure these health issues but it definately helps the body heal and improve
(no heat or smell in the house)
I know money can be tight with what we are dealing with, but I found a fantastic chiropractor practitioner (who is super knowledgeable in cell health/biochemistry/methylation etc)
they had a fantastic diagnostic tool that can assess nerve health along the spine, where the trouble spots are spine wise and spinal cord wise.
they have been treating me functionally and over the 6 months my posture has improved.
the treatments are not just chiropractic adjustments, it is supporting the body while it clears toxins, and minimising inflammation.
(things like vagus nerve stimulation etc http://www.healthline.com/human-body-maps/vagus-nerve )
things like Acupuncture are also fantastic for this - it wont cure these health issues but it definately helps the body heal and improve
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
given your combo of health issues and your families health issues - consider investing the $15-$20 in getting Carolyn Deans book ' the Magnesium Miracle'
there are some excerpts from the book here, http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20099
http://www.goodreads.com/book/show/1474 ... um_Miracle
there are some excerpts from the book here, http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20099
http://www.goodreads.com/book/show/1474 ... um_Miracle
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama