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Support Groups In Mass

Guest Tracykobegf

By Guest Tracykobegf
in Introduce Yourself / Share Stuff

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Guest Tracykobegf
Guest Tracykobegf
Posted

Hi. I am 21 fairly new to this disease i was diagnosed in Dec 05 and i am really not likeing this at all, all i want is to find a good pizza! Anywayz i was wondering if anyone new of any support group in or around Massachusetts, also does anyone know where i can get gluten-free beer, because i dont like hard alcohol and i used to just drink a beer but i cant even do that any more, if anyone has any info that would be great! Also if anyone is in New England and wants absolutley delicious donuts and bagels(and this is coming from some one who rarely eats "gluten-free" i just try to eat regular food that is "gluten-free" not special food) the place is called West Meadow Fram Bakery in Vermont!!! The donuts taste like real doughboys!!!!! Thanks!

  • 3 months later...
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Mjohnson73 Apprentice
Mjohnson73
Posted
Hi. I am 21 fairly new to this disease i was diagnosed in Dec 05 and i am really not likeing this at all, all i want is to find a good pizza! Anywayz i was wondering if anyone new of any support group in or around Massachusetts, also does anyone know where i can get gluten-free beer, because i dont like hard alcohol and i used to just drink a beer but i cant even do that any more, if anyone has any info that would be great! Also if anyone is in New England and wants absolutley delicious donuts and bagels(and this is coming from some one who rarely eats "gluten-free" i just try to eat regular food that is "gluten-free" not special food) the place is called West Meadow Fram Bakery in Vermont!!! The donuts taste like real doughboys!!!!! Thanks!

<{POST_SNAPBACK}>

Where in Mass are you? I am in Central Mass and am also looking for a support group...

I am still waiting for my test results from the Dr. but he thinks I might have Celiac...

Don't know about the gluten-free Beer, since I don't drink.... I don't know if they make a gluten-free beer but... they might... and I will have to look up that bakery in Vermont...thanks!

--Maya

pixiegirl Enthusiast
pixiegirl
Posted

HI and welcome to the group, I'm on Cape Cod and there is a Celiac group on the Cape (I'm not a member yet....) and I know there is one (probably more then one) in Boston too.

Are you saying that the bakery in Vermont is Gluten Free? Heck I'd drive to Vermont for that! I love VT any how. Why isn't there a gluten-free bakery in Boston thats what I want to know??

Susan

nothungry Contributor
nothungry
Posted

I know of two gluten free beers. Bard's tale beer and Ramapo Valley Beer. Bard's has a website and a listing of where their beer is available (a lot of Outback restaurants have it). I have only tried Ramapo Valley beer and it is okay. Also, Woodchuck cider is gluten free and widely available. I didn't used to like it, but it tasted a lot better now that my options are fewer. Good luck. Also, where is this bakery in Vermont?

Portageegal Newbie
Portageegal
Posted

Susan,

Where on th Cape are you? I was born and raised in Provincetown. Moved to Millis a couple of years ago.

Portageegal Newbie
Portageegal
Posted

Susan,

Where on th Cape are you? I was born and raised in Provincetown. Moved to Millis a couple of years ago.

pixiegirl Enthusiast
pixiegirl
Posted

I'm in Cotuit!

Susan

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Jen H Contributor
Jen H
Posted

Hi Susan,

I'm from the Cape too (Hyannis). I was diagnosed with celiac sprue last week and would like to join a support group. Do you know a contact name/number for a support group on the Cape? Also, do you know a good GI doctor and nutritionist on the Cape or in Boston?

Thanks, Jen

  • 3 weeks later...
maxcarr Newbie
maxcarr
Posted
Hi Susan,

I'm from the Cape too (Hyannis).  I was diagnosed with celiac sprue last week and would like to join a support group.  Do you know a contact name/number for a support group on the Cape? Also, do you know a good GI doctor and nutritionist on the Cape or in Boston?

Thanks, Jen

<{POST_SNAPBACK}>

maxcarr Newbie
maxcarr
Posted

Hi Jen, this is my first posting, but I wanted to recommend a dr and nutritionist in Boston. I use Dr. Kieran Kelly at Beth Isreal, and his nutritionist, Melinda Dennis, who also has celiac disease, so she knows her stuff. Good luck!

jennysugar Newbie
jennysugar
Posted

Hey - I live in VT and you are so right about that West Meadow Bakery. How'd you hear about it? Did you live in VT?

Sugar

Jen H Contributor
Jen H
Posted

Hey Max,

Thanks for getting back to me on the GI doctor in Boston. I have heard great things about Dr. Kelly and the Celiac Center. I found a GI doctor on the Cape and went to see a nutritionist too. I'm going to see how that goes for a while.

:) Jen

pixiegirl Enthusiast
pixiegirl
Posted

Hi I just got back from vacation and am catching up.... I'm not sure if I have the info about the cape celiac group but I'm sure I can find it on line some place... I'll see what I can find for you. They meet in Mashpee I believe.

I'm curious what GI doctor you found on the cape. My internist is Dr. Rosa Moncholi in Hyannis but I don't think she is accepting any new patients. She didn't diagnose me but she is very accepting about celiac and seems to know a lot about it.

Susan

Jen H Contributor
Jen H
Posted

Hey Pixiegirl,

Dr. Kathleen Koehler is my GI doctor. She's right in Hyannis. I like her a lot, but she is often quite busy and it can be hard getting an appointment with her. My GP is Maureen Kelleher. She's in Yarmouthport. I haven't been to see her yet, but she has a subspecialty in GI medicine.

I got an email from the support group leader here on the Cape. Would you like me to forward you her information? There is a meeting on September 25th in Mashpee.

:) Jen

pixiegirl Enthusiast
pixiegirl
Posted

Yes forward me the info about the meeting... are you going to go??

Susan

Jen H Contributor
Jen H
Posted

Hi Pixiegirl,

I have a few emails from the Cape support group leader that I can forward to you if you want. What's your email address? If you email the group leader she'll add you to the correspondence list. Her name is Margo Finnell and her email address is margo820@juno.com.

The next meeting is on September 25th from 12:30-3 at Christ the King church in Mashpee. Someone from Trader Joes will be speaking and is bringing gluten-free samples. An RN is also speaking and I think there's a movie. I think I will go-it'll be my first meeting as well.

:) Jen

  • 2 weeks later...
KMcClee Newbie
KMcClee
Posted

Hi Maya,

I also live in Central Mass. I was diagnosed with "Gluten Sensitivities" 4 weeks ago.

Did you ever find a support group in this area?

KJ

elbar Apprentice
elbar
Posted

Anyone out there in the Greenfield, MA area? I've been re-diagnosed after thinking I was cured for 54 years. I never wanted to believe any of the health professionals or the material I ever read that said you can't be cured. I guess I wanted to believe I truly was cured! Anyway, now I have DH and am trying to follow a gluten-free diet which almost seems impossible with all the opportunities for cross contamination. These message boards are great - they give me such inspiration.

elbar

pixiegirl Enthusiast
pixiegirl
Posted

Hi Jen,

I wrote to the Mashpee group and I'm planning to go to the meeting on Sept. 25th too. I hope to see you there.

Susan :D

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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

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