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

Hello From Md

Ed-G

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
    2. BlessedinBoston
      - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      @Jmartes71, I understand your frustration and anger. I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone. My doctors did not recognize nutritional deficiencies. Doctors are trained in medical learning institutions that are funded by pharmaceutical companies...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in...
    5. marion wheaton
      - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748
    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.