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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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    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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