Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Support Groups In Mass

Guest Tracykobegf

By Guest Tracykobegf
in Introduce Yourself / Share Stuff

Recommended Posts

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...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. dixonpete
      0

      Hookworm load planner

    2. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    5. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,090
    • Most Online (within 30 mins)
      7,748
    Jamie B
    Newest Member
    Jamie B
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.