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Anyone In Md Or East Coast?


KaitiUSA

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par18 Apprentice

I'm right down the road outside Richmond , Va. Married and semi-retired. Play lots of golf and build bluebird houses and study the species. Enjoy life and good health thanks to gluten-free diet. Looking foward to cooler weather.

Tom


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debbiewil Rookie

Hi Kaiti and everyone,

Well, I live in Frederick, Maryland and worked there until last month. Now I work in Myersville, just a few minutes away. So, yeah, I know Frederick and Mt. Airy and the rest of the area. I'm 50 but still going to school part time. I was dumb and didn't go at 18, so finally went several years ago and got my AA (at Frederick Community) Now I'm trying to finish my BA from UMUC. I only have 9 more credits, so I'm going to try to finish in May. But that leaves little time for anything else right now. Sigh. A couple of friends and I were thinking of seeing Serenity at that movie theater Friday night, if anyone else wants to join us.

I'm new to this board - actually I haven't been diagnosed celiac yet, but I'm pretty sure I have it. Also DH - I've had this skin condition for 25 years now, little blisters on my hands, arms, legs and feet that itch like crazy - I scratch, and end up with sores all over. I told my doctor 10 years ago I couldn't eat pasta because it gave me a stomach ache but now after several more celiac symptoms have shown up the doc finally thinks maybe I should get tested. After reading about celiac disease, my only response was, "well, if there's anything here I don't have, I guarantee you someone in my family does!" Going down the symptoms and related diseases was like going over my family's medical history - Type I diabetes, thyroid disease, colon and stomach cancers, Addison's disease - every member of my family has one of them by age 50, and many much younger. Anyway, what I'm working on is getting the skin test - if that's positive, then I've got it and don't have to go through the intestinal biopsy. Either way, the dermatologist and the gastroentologist that my doctor uses both have a couple of months waiting period for appointments. I made an appointment with the dermatologist, and have been trying to eat gluten-free for the past few weeks (the skin biopsy, from what I've been told, will be positive for several months, maybe years, unlike the intestinal biopsy where if the villi heal in a few weeks, won't show the disease if you're gluten-free.) I have noticed a difference, I feel much better gluten-free and can already tell big time if something with gluten accidently slips in - which has happened a couple of times. I haven't figured out all the "hidden gluten" tricks yet. But I'm working on it.

Sorry this is so long, but thought I'd introduce myself.

Debbie

happygirl Collaborator

Also in the area.

dlb64 Newbie
Hi Beth,

We have a lot in common! I live in MA as well. But west of Boston. I Work in Newton as a Sales Engineer in high tech (Geek  :D ). I am 37 (almost 38) and married with 2 stepsons.

I had positive ELISA IGA and IGG tests about 4 weeks ago.

I don't know anyonw with Gluten Intolerance or Celiac's and my diagnosis is new. I would love to chat sometime.

KJ

<{POST_SNAPBACK}>

Hi KJ,

I live in MA too.....in the Western part of the state. I was diagnosed 9/20 after losing 18 lbs! Unfortunately, I didn't need to lose any weight. :)

I changed my diet immediately and have noticed a difference. Have you changed your diet? I just had an upper GI done today and am having an endoscopy procedure in a couple of weeks....just to rule out anything else that may be going on.

I have 2 teenagers who were tested yesterday.

I have a pretty bland diet at the moment, but do have access to a few people who also have celiac so hopefully I can get "product" info from them.

Let me know how you are doing.

Donna :)

Guest BERNESES

Hey- I saw all the Massachusetts people on here so I revived the thread. I'm in Portsmouth NH but grew up in Lynnfield, MA and all my family and my husband's family is in MA too- Peabody, Beverly, Reading. I love Manchester and my therapist (I need one after this year!) is right on the Swampscott/Lynn line too. I'm down there all the time if you guys want to get together and form our own little support group. Or just email back and forth. Feel free to email me through the board. Hope to hear from you, Beverly

gluegluten Newbie

i am from south carolina, i used to go to school in savannah, ga.

GFinVA Newbie

Hi everyone - I'm new to the forum and have found all the information very helpful. I've been gluten-free since April 2003. It's nice to that there are other people like me out there!

I'm 24 years old and I recently moved from Philadelphia to Fairfax, VA (not too far from Kaiti). I really enjoy reading what you all have to say. Take care!


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KaitiUSA Enthusiast
Hi everyone - I'm new to the forum and have found all the information very helpful.  I've been gluten-free since April 2003.  It's nice to that there are other people like me out there!

I'm 24 years old and I recently moved from Philadelphia to Fairfax, VA (not too far from Kaiti).  I really enjoy reading what you all have to say.  Take care!

<{POST_SNAPBACK}>

Welcome to the board :D You will love it here...the people on here are so knowledgeable and supportive. Feel free to contact me anytime...you don't live to far away from me...there are quite a few celiacs I know that also live around here

There should be like a gluten free state where all the celiacs live in the U.S ..that would be cool.

jerseyangel Proficient

Hi, everyone! I saw New Jersey mentioned. I live in Burlington Twp. which is midway between Phila. and Trenton. I'm a 49 yr. old married mom of 2 sons. I grew up in central NY and have lived in the Atlanta, GA area as well as in northern NJ-Warren Co. My husband was transferred around a bit. We've been here for almost 10 yrs. now and absolutely love it here. Its so nice that we have this forum to go to as I, also, have never met anyone else with celiac disease.

Katefreeman Newbie

Hi, Kaiti!!

I love the way you spell your name! :) I live in Richmond, VA. I'm 25, and I recently graduated from Oklahoma City University with a Master's in Musical Theatre. I work with regional theatres around the metro area, and I'm a substitute teacher in one of our local counties. Like you, I don't know a SOUL with celiac disease. I've been gluten-free since July of 2004. It's hard to go through it alone, but it seems we're both making the best of a unique situation! Best of luck to you. Stay in touch, okay?!

Katie

maxcarr Newbie

Hi Beverly, there is an awesome restaurant in Beverly MA with tons of gluten-free food, and a very understanding staff - let me know if you are going to be in the area and we can have lunch there! It's called the Organic Garden, it's on Cabot Street. My email is mscarr@verizon.net.

MaryAnn

  • 4 weeks later...
francelajoie Explorer

Hi there MA people

I live in Leominster MA. I was just diagnosed with Celiac though I am not 100% sure about the diagnosis. Just a blood test and "you have celiac". Sould I get a seond opinion on this?

I did start the gluten free diet and I'm looking for local support groups...any suggestions?

France

Nemi555 Newbie

Hi!

I'm excited to see there are folks from Massachusetts here! I'm from Western MA too - Springfield area and have just begun the testing for celiac disease. My son too. We'be been gluten free for almost a month and have felt great but now have to go back to eating gluten in order for the doc to see how sick we are and for the tests to register properly. ugh.

I'm glad to have found this site as I know of only one person so far who has celiac disease and it sure would be nice to get to know more folks with this and learn how to live with celiac disease!

Cathy

francelajoie Explorer

Hi Cathy,

Where are you getting your tests done? I think I might need further testing.

The gluten free diet seems to be working but certain things like coffee make me ill and coffee is suppose to be safe.

France

swittenauer Enthusiast

Sorry no east coast here.....I can't seem to find anyone on here from Kentucky.

Guest BERNESES

MaryAnn- I went to the Organic Garden cafe last week and had falafel for the first time in almost a year! I almost died of happiness. thanks for the recommendation! Beverly

danikali Enthusiast

Hi everyone! I'm also new to this whole thing. It's been 2 weeks now? Anyway, I live in NYC; I saw some New Jersey and a lot of MA, anyone from NYC or anywhere close to the city? New Jersey is close.

I'm 21 and almost done with my undergraduate degree. I also work at a law firm and I'm engaged! I live in Manhattan and love to do all the "city stuff." Anyone else?

Also, if anyone lives in or near the city, do you know of any gluten free resturants? I "used" to eat out all the time, every meal, but starting Thursday, I'm going to have to change my whole lifestyle! It's going to be hard always being on the run.........any tips from anyone? Or quick easy and healthy gluten free food?

-Danielle (Dani)

darlindeb25 Collaborator

I am on Long Island--about 40 miles maybe from Dani--I live in East Islip--Deb

Nemi555 Newbie
Hi Cathy,

Where are you getting your tests done? I think I might need further testing.

The gluten free diet seems to be working but certain things like coffee make me ill and coffee is suppose to be safe.

France

<{POST_SNAPBACK}>

Hi France,

What kind of coffee? Plain coffee? There may be something else in there that is bothering you and it's not gluten. Do you add any creamer or anything? Those can have gluten. I have other food allergies so have to watch out for those too. Anyone else have issues with coffee? I can't drink it on an empty stomach but I don't suppose that is the same thing.

I am having my tests done here in Springfield, through Baystate Medical Center and they sent my results to a lab in Cambridge.

What kind of tests are you looking to have done?

Cathy

Lisa Mentor

I living in the northeast coast of North Carolina ( I think most everyone here knows that).

Guest BERNESES

France- Coffee makes me violently ill. I've never been able to figure it out. I can handle caffeine in diet Coke, but coffee rips my GI tract to shreds. I've always been that way.

jkmunchkin Rising Star

I live in NY - just outside of the city, but work in the city. I'm 28, and just got married a couple weeks ago.

I work as a business manager for a magazine - which basically consumes the majority of my life, but for fun I like to go to concerts (preferably hard rock and heavy metal - you would never know by looking at me that is what I listen to). I'm an expert shopper, and love to just watch movies and be social : )

I feel like I just wrote a personal ad - lol!!!

mookie03 Contributor
Hi everyone! I'm also new to this whole thing. It's been 2 weeks now? Anyway, I live in NYC; I saw some New Jersey and a lot of MA, anyone from NYC or anywhere close to the city? New Jersey is close.

I'm 21 and almost done with my undergraduate degree. I also work at a law firm and I'm engaged! I live in Manhattan and love to do all the "city stuff." Anyone else?

Also, if anyone lives in or near the city, do you know of any gluten free resturants? I "used" to eat out all the time, every meal, but starting Thursday, I'm going to have to change my whole lifestyle! It's going to be hard always being on the run.........any tips from anyone? Or quick easy and healthy gluten free food?

-Danielle (Dani)

<{POST_SNAPBACK}>

Hey Dani,

Not only do i live in NYC, but I am in my last year at Fordham Law school. I just turned 24. Are you planning on going to law school? I also know several gluten-free restaurants in NY- risotteria is downtown, supposed to be great. Also Sambuca on W72nd- ive been there and they have a good gluten-free menu. Where in manhattan do u live? i have a great grocery store in midtown, and a good one on the upper east side too...feel free to email me if u want more info: stefikaplan@gmail.com

cant believe there arent more NYC people on this site!!!

jkmunchkin Rising Star

Dani - if you need a wedding planner I'm still in the whole planning mode so ask any questions you want - hehehe!!!

No but seriously, where I work we have more engaged girls than you can possibly imagine. I'm already helping 1 of my good friends with her wedding. She literally has recruited me as her planner.

I had the most amazing vendors so if you need any recommendations let me know. And if you want we can meet up for gluten-free pizza at Risotteria : )

mookie03 Contributor
Dani - if you need a wedding planner I'm still in the whole planning mode so ask any questions you want - hehehe!!!

No but seriously, where I work we have more engaged girls than you can possibly imagine. I'm already helping 1 of my good friends with her wedding. She literally has recruited me as her planner.

I had the most amazing vendors so if you need any recommendations let me know. And if you want we can meet up for gluten-free pizza at Risotteria : )

<{POST_SNAPBACK}>

We should all meet up there...ive heard its delicious! (and then on to dessert at happyhappyhappy or babycakes!)

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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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