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Hello From Md

Ed-G

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Ed-G Newbie
Ed-G
Posted

Hello, I am from Maryland and have had celiac all my life. I've been to this site before but haven't posted much. I'm looking to chat with others with similar experiences and to get a different outlook on things. Thanks.

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darlindeb25 Collaborator
darlindeb25
Posted

Welcome to the board Ed. There is always someone here ready to help or who needs help. Chat away!!!!

Guhlia Rising Star
Guhlia
Posted

Hi Ed. I'm from PA. I was just diagnosed 3 years ago, but I have been sick all of my life.

Ed-G Newbie
Ed-G
Posted
  • Author

Hi Guhlia, I hope you are feeling better. I've had celiac disease since birth. While I've had little abdominal pain, I always had gas, diarrehia (sp?), and an inability to gain weight."

luda Newbie
luda
Posted

Hi! I'm from MD too. New on the forum but I've learned more browsing this site for one day than I have talking to doctors!

Anne AMP Apprentice
Anne AMP
Posted

Does anyone know of a good GI doctor in Maryland? I am in desperate need of help. Down to 94lbs and my doctors - four of them don't know what to do.

happygirl Collaborator
happygirl
Posted

One of the world's experts on Celiac is in Baltimore. Dr. Alessio Fasano.

www.celiaccenter.org

Call his clinic and get an app't set up. 410-328-6749 & 1-800-492-5538

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kevsmom Contributor
kevsmom
Posted

Hi Ed,

I'm from Westminster. I have been in touch with Carroll Hospital Center several times asking them to form a support group. The first two times they told me "We don't need anything like that in Carroll County". The last time that I spoke to them, they said that they would consider it, but it would take a long time to set up, if they were going to do it they would want to do it right. I have been attending a group in Gettysburg. They are having a meeting on Monday, May 7th. They have been having other activities as well. On April 28th there is going to be a gluten free luncheon. Also - FYI there is a new Martin's Grocery Store in Eldersburg that carries a lot of gluten free food (reasonably priced). They have their own nutritionist on staff!

If you're interested in the activities in Gettysburg, or if you just want to chat - please feel free to pm me.

Cindy

Ed-G Newbie
Ed-G
Posted
  • Author

Hi Luda, nice to meet you. I do understand how you feel. Except for a pediatrician (long ago) who heard of celiac and was hoping whatever I had wouldn't kill me, I learned everything on my own and through relatives. I was still ignorant of how this thing affects me as of about eight years ago.

Ed

PatBrown Newbie
PatBrown
Posted

Ed, I dont know where Manchester, Md. is but I live in Northern Virginia and go to the dentist near F foods. I found a nice frozen pizza for 2.99 and yummy cookies. They also have gluten-free vitamins and lots of mixes. Other places that I shop in just have dribs and drabs.

blueeyedmanda Community Regular
blueeyedmanda
Posted

Hi Ed, Welcome to the site

I am from PA. Close to MD though. Did you ever try anything from the grainless baker. Very good!!!

Ed-G Newbie
Ed-G
Posted
  • Author

Pat, Manchester is in Carroll County, about 12 miles away from the PA border. I don't know much about Virginia, but I do know of a Whole Foods in Baltimore. That place is great.

Ed-G Newbie
Ed-G
Posted
  • Author

Manda, I haven't visited them. Is it in southern PA?

blueeyedmanda Community Regular
blueeyedmanda
Posted

Actually they are a PA company who sell homemade baked goods to stores in different states surrounding PA.

www.grainlessbaker.com

If you know where Hunt Valley is you can go to Wegmans, they put gluten free on their store brand products and they are very good about food allergies special diets.

gdobson Explorer
gdobson
Posted

We are going to Baltimore next month for the Celiac 5k. Can anyone suggest any place to eat dinner?

Lauren M Explorer
Lauren M
Posted
We are going to Baltimore next month for the Celiac 5k. Can anyone suggest any place to eat dinner?

The Great Sage in Clarksville is wonderful! I highly recommend them:

Open Original Shared Link

If you look at their menu, you see that they make many accomodations for a gluten-free meal. Delicious!!!!

- Lauren (who will also be at the B-more Making Track for Celiacs 5k!)

gdobson Explorer
gdobson
Posted

Cool! Thanks - We will definitely check it out!

  • 2 months later...
GF-WF Dee Newbie
GF-WF Dee
Posted

Hi, I'm from Hampstead, Maryland. Myself and two of my sons are Celiac. I live @ Wegman's in Hunt Vally. They have a very nice wf/gluten-free selection. I spend so much time there they offered me a job in the wf/gluten-free section. There are alot of products that they don't carry that I can only find on line.

I was reading some of your replies. The woman that lives in Westminster that was trying to get carroll county hosp. to have meeting. Well the few times I have been to Carroll County Hopsital they have almost killed me with the food they tried to give me. No one in the kitchen had any idea what to do. I just had a baby and had to send my husband out to the health food store to get me something to eat.

I been on a gluten-free diet for years now and I still mess up sometimes. There are times I eat something wrong I can't figure out what it is. It's hard to keep up. I hope things are well for you. I would love to chat.

Take care,

WF/gluten-free Dee

PB-J-Celiac Newbie
PB-J-Celiac
Posted
Hello, I am from Maryland and have had celiac all my life. I've been to this site before but haven't posted much. I'm looking to chat with others with similar experiences and to get a different outlook on things. Thanks.

Hi Ed,

I dont live in Maryland anymore, but I just graduated from University of Maryland and after 4 years there I do have one place you might like to try. Its a small restaurant in Rockville, MD (down towards to southern tip, by DC in Montgomery County) called Lillit Cafe (I think that's how you spell it). Anyway, they have a list of sandwiches that are to die for, and they also sell products like breads and desserts. They are also trying to organize an awareness group and have specials at the restaurant for just celiacs. Dont know how close you are to that area, but if you're ever in that area, you should give it a try. Good luck.

James, NY

WHinNOVA Rookie
WHinNOVA
Posted

Welcome Ed. I'm nearby in northern Virginia.

WH

  • 1 year later...
mamaesq Rookie
mamaesq
Posted

Wow, there are a lot of us on the Rt. 30 corridor! I am 6 days into being gluten-free as my mom and I were diagnosed last week. I suspect my almost 4 year old son is too, I had him down to see Dr. Fasano last week, but at the time I didn't know my results and he hasn't fallen completely off the charts yet. Dr. Fasano is doing a wait and see, he wants me to try to treat his constipation and if that doesn't help, then he's going to start evaluating for celiac. I imagine that since I just found out that I have the DQ2 gene that he'll want to do something when we go back in December. He's only 31.7 lbs, and at his 3 year appointment in November he was 30.4 lbs. My husband and I are little, but he should be gaining more than that in 11 months.

Anyway, enough about me. I am surprised that Weis has a half decent gluten-free section, although the one in Westminster is nicer. If anyone was at Weis on Sunday morning, I was the woman walking around the store sobbing because I was so overwhelmed!

Stacy

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      High DGP-A with normal IGA

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      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
      High DGP-A with normal IGA

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      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.
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      High DGP-A with normal IGA

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      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.
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