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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.