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Support Groups In Mass


Guest Tracykobegf

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Guest Tracykobegf

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
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

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

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

Susan,

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

Portageegal Newbie

Susan,

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

pixiegirl Enthusiast

I'm in Cotuit!

Susan


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Jen H Contributor

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
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

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

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

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

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

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

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

Susan

Jen H Contributor

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

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

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

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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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