Excited about Upcoming Celiac Support Group Meeting!

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Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

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Gabes-Apg
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Post by Gabes-Apg »

as I just ate my breaky - i thought I would mention 'how gabes incorporates bone broth into most meals'

keeping mind that i no longer have histamine issues..
I 'boil' chicken breast in bone broth, for snacks through the day. this keeps it moist and gives it some flavour
once the chicken is cooked, i then boil my veges in it.

today I boiled up some chicken (for snacks and lunch as I will be out for the day), and then for breakfast, i put some of the hot bone broth in smaller saucepan, added my pre cooked bone broth stew (veal and lamb based with grated safe veges) that had been frozen in batches, so this makes my soupy/stew for breakfast. I can tolerate eggs so i put two small eggs in it - and they sort of 'poach' in the soupy stew. the white cooks and the yolk semi cooks.

this is also great in summer, as you are having main hot meal earlier in the day when the temps are a bit lower.
Gabes Ryan

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hollyweb
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Post by hollyweb »

These are great ideas, Gabes, thank you! When I drank my first bone broth yesterday it almost made me "giddy" ... it's like my body just grabbed it and I could feel it being absorbed immediately into my tissues! It's terrific to hear the way you incorporate it into your day's meal plan.

Just ordered Dr. Carolyn Dean's book today, before even reading this post. I'm so grateful to you, Tex, and all members of the board for your invaluable help in my own healing journey!

~ Holly :ChefStirringPot:
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

"I strive to live in my heart, not in my head!"
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Post by hollyweb »

Here's a quick update after attending my first local celiac support group! There were only 2 other women there this time (both also with multiple food/environment sensitivities), and no speaker; however, this was because their group is deeply involved with the FDA and obtaining the right petitions to (hopefully) successfully get the FDA to make it mandatory that any medication containing gluten is labeled as having gluten. Previously, a group member had brought a lawsuit against the FDA due to sickness resulting from improperly labeled medication. The group leader told me that in a case like that, all the FDA has to do is respond; if the party being sued does NOT respond, the party bringing the suit automatically wins. Well, the FDA did respond, and they apparently "opened the door" to further discussions about the issue. So, this is where the efforts of the group are primarily being directed at this time on social media.

I asked and was told that the Celiac Support Group specifically chose to detach from any national organization, so that they could "do their own thing". They have an absolutely beautiful brochure! They hold Dr. Fine and EnteroLabs in such high esteem, and told me stories of family and other group members who literally owed him their lives.

In addition to sharing stress management tips and some recipe ideas, plus getting to know each other, I was shown something that might be of benefit to some of us ... it's a kit you can purchase and use at home to test the amount of gluten in a food, liquid or on a surface. The test can be set to either 5 ppm or 20 ppm, and will also work on cosmetics and personal care products. It requires no special equipment, and is available in a small size (that will provide 2 tests) for roughly $35 USD, or a larger size (that will provide 5 tests) for about $70 USD. They purchase these kits in a small quantity and get a price break, and make the kits available to their members (who pre-order, as there is an expiration date involved) at their cost. It takes about 20 minutes to get your results, but could be quicker if large amounts of gluten are detected!

For anyone interested, here is a link: http://www.glutenfreetherapeutics.com/s ... ction-kit/

~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

"I strive to live in my heart, not in my head!"
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Post by brandy »

Hi Holly,

Great update! The price on the gluten test kit is the cheapest that I've seen. It sounds like you met a nice group of folks. I find attendance at almost anything is down during mid August.
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Post by Vanessa »

Wow that's interesting Holly. I didn't know those kits existed. Thanks for the info.
Vanessa
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jessica329
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Post by jessica329 »

Holly,
Would you mind sharing some of the stress management tips?
Jessica
Lymphocytic colitis August 2012
hollyweb
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Post by hollyweb »

Hi, Jessica,

Not at all! The tips that were given were various breathing and meditation exercises. One of the group leader's suggestions was something I'd not heard phrased this way ... she spoke of "breathing in and out of your heart". She also had a "one minute" meditation; she described hers to us and noted that it is something each person needs to personalize. Such as, closing your eyes and visualizing as strongly as possible a person (living or not) whom you love deeply and whom you know loves you. For one minute hold a picture in your mind of you and that person together, with the end result after a minute that you should feel much more calm and peaceful.

(I could definitely tell the positive effects from the ReMag as previously doing an exercise like this would always bring me to tears!)

The other things that she mentioned were to be sure to get enough sleep, and to definitely "get rid of any feelings of guilt about putting yourself and your own health needs first". Very wise woman, and I enjoyed meeting both women in the group very much.

~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

"I strive to live in my heart, not in my head!"
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gac
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Post by gac »

Telling people that regular food is poison to us is the best suggestion I've been given this year. It will make far more sense to them than to try to explain that I am "allergic", "intolerant", etc. They just don't get it. And to try to explain that EVERYTHING they eat makes me sick, EVERYTHING I used to eat now makes me sick and is now on my do-not-ever-eat list is almost impossible for them to comprehend. I understand as even my doctor didn't make that clear to me.

Erica, I so understand your thoughts and feelings. This seems to be the only place where we can talk and vent. I live in Metro Atlanta, such a huge place, yet I have not found any group that I would feel comfortable going to and talking about my new life. Only here on this forum can I discuss the awful day I had yesterday and not embarrass myself. I don't know if I could discuss that in a mixed group face-to-face. But yes, wouldn't it be wonderful if I had just one friend who lived near me, that I could call and meet for a cup of coffee and sit and cry like I did all by myself yesterday. We don't have anyone right here in our houses or next door or a couple miles away from us who lives this life. There may be someone who cares about us (if we are lucky) but that person doesn't live our life. So Erica, yes, I wish you lived next door and could knock on my door and say, "Hey, Gail, I am having such a crappy day, can I come in and talk?"

That isolation is so damn difficult. And the longer we have MC the more we are isolated. I don't believe I will ever feel this is under control enough to have a social life. Good thing I never wanted to date again - I'd given up on that before MC. I just can't imagine feeling comfortable going anywhere except with my daughter who knows how bad this can be. Yesterday was an unexpected major Big D Day and if I had not been at home, what in the heck would I have done? The sheer volume of Big D would have been unmanageable in my car or at a store or at a friend's house or anywhere. And it lasted for hours and hours. When that happens, I realize I cannot leave my house. I couldn't even walk to the mailbox at the end of the driveway. That is how out-of-control my day was and for NO REASON. I am 13 months into my diagnosis with MC and this is life.

Very frustrated and isolated and thankful for all of you, every single one of you.

Gail
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Post by dhouts »

Holly,
I am so interested in reading your report about the group meeting. I was so excited to read that you live in Sacramento; not too far from me! I'm in Berkeley and anytime you want to get together (well, weekends only since I work M-F), let me know. I am more than willing to drive on up to Sacramento.

And if there is anyone else in the Bay Area that wants to get together, let me know :)
Diana
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Post by hollyweb »

Hi Diana!

I would LOVE to get together with you and any others from the board! We definitely live within a few hours of each other, how exciting! :banana:

~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

"I strive to live in my heart, not in my head!"
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Post by Gabes-Apg »

PP people meet ups are fun!!

In 2010, Ant (who is english gent living in Hong Kong) and I met up in Hong Kong airport and had 'MC safe get together' when I was transiting hong kong airport for a few hours (on a work trip from Aus to France) it was a hoot. I was very chuffed at his efforts, as it was early morning time slot for him.

Lyn (who is not as active on the board now) and I met up in her City, when I did a work there.

And Joe (also not as active on the board now) has travelled to Australia twice and we have met up.
Gabes Ryan

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hollyweb
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Post by hollyweb »

Gabes, that sounds like so much fun!!!!! Did you all wear your PP tee-shirts??! That would be quite a sight!! :mate:
~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

"I strive to live in my heart, not in my head!"
dhouts
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Post by dhouts »

Hi Gail,

Somehow I missed your post. I think I didn't see that there wasn't a second page to this post and now that I have just read it, I want you to know that I am so sorry you had such a horrible day. I wish I lived closer, I certainly would have been there for you. This disease can be so dang frustrating and debilitating. Recently, I had the worst flare ever. It was so disgusting and I couldn't figure out what it was that triggered the flare. I mean, everything was so normal that I wanted to post pictures on social media, then out of the blue, FLARE. For days. And it took several days to realize that the very safe mag that I had ordered was not so safe for me. I actually started using Entocort because my body would not calm down.

I do hope that your body is calming down. I am thinking about you and sending good thoughts.
Diana
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gac
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Post by gac »

Thanks, Diana. I'm wondering if I reacted to the d-Mannose I had to take for a UTI, even though I have taken it before and I am still taking it and must still take it. Who knows????? I think my body just goes thru cycles where it decides to push a "REJECT" button and everything that has gone in my mouth in the past 24 hours gets rejected quickly until I am completely empty. What amazes me is that I never lose weight thru all of this. Still my same fat self.

I've given up on the Entocort for now after a year of taking it and I'm trying to control this with diet and diarrhea meds alone and that may be another reason it happened.

I envy any of you who manage to meet each other. For now, meeting here is awesome for me and your friendship ROCKS!!!!

I am being a lazy slug, watching TV, reading, sleeping late, napping, and taking care of myself.

Gail in Atlanta
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Post by Janie »

I wished I live closer to you, Holly too. I can't believe there isn't anyone closer to me. I know of one from this board, that lives I believe in Play Del Rey, but that is an hour in non traffic which is never an hour. :roll:
Janie
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