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 Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
    2. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test. In...
    3. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covere...
    4. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced. Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well. Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside...
    5. Wheatwacked
      - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748
    SinnamonToasty
    Newest Member
    SinnamonToasty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      Have I got coeliac disease

      By trents · Posted

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      Have I got coeliac disease

      By Wheatwacked · Posted

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
×
×
  • 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.