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

First Celiac Appointment In 10 Years

sdsdsm1971

By sdsdsm1971
in Doctors

Recommended Posts

sdsdsm1971 Newbie
sdsdsm1971
Posted

I was diagnosed in 1996 and cheated on the diet for 10 years. I have gone completely gluten free since May and finally have an appointment with a celiac specialist in Baltimore. Any advice on things I should ask at the appoinment? I am concerned that I may have done damage cheating for all those years, but I don't know how they will figure that out.

My symptoms have mainly been fatigue and DH, but they have gone away with the diet. Could I have stomach cancer and not know it? How do they test for that?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
I was diagnosed in 1996 and cheated on the diet for 10 years. I have gone completely gluten free since May and finally have an appointment with a celiac specialist in Baltimore. Any advice on things I should ask at the appoinment? I am concerned that I may have done damage cheating for all those years, but I don't know how they will figure that out.

My symptoms have mainly been fatigue and DH, but they have gone away with the diet. Could I have stomach cancer and not know it? How do they test for that?

If your symptoms mainly were the DH and fatigue I would not worry too much about the possibility of cancer but the doctor will be the best one to set your mind at ease on that. You want to have them run a celiac panel to make sure your not getting strong CC, and also have them do a B12, ferritin, and folate levels as well as checking your cholesteral, liver function and blood sugar. Also make sure you get copies of your test results. I would suggest since you have been having fatigue that you make sure you take a good gluten-free supplement and also some additional sublingual B12 might be helpful. Just make sure you let your doctor know anything you are taking. Welcome back to the gluten free world, I am glad to hear you are back on the diet. I think you'll be fine as long as you stay with it.

Veronica Rookie
Veronica
Posted

Sooo.....how did your appt go? Good news?!?!

Corkdarrr Enthusiast
Corkdarrr
Posted

How did you go about finding a celiac specialist?

happygirl Collaborator
happygirl
Posted

cluecke-Baltimore (University of Maryland at Baltimore) has one of the leading Celiac specialists, Dr. Alessio Fassano. He runs a Celiac research center. His link is: www.celiaccenter.org

(I don't know who she is seeing, just wanted to add that it might be him or one of his colleagues, since there are very very very few Celiac experts)

sdsdsm1971 Newbie
sdsdsm1971
Posted
  • Author
cluecke-Baltimore (University of Maryland at Baltimore) has one of the leading Celiac specialists, Dr. Alessio Fassano. He runs a Celiac research center. His link is: www.celiaccenter.org

(I don't know who she is seeing, just wanted to add that it might be him or one of his colleagues, since there are very very very few Celiac experts)

Yes, I went to see Dr. Fassano. He was great and has a nery good team. They don't rush you -- I was there for two hours talking to nutritionist, nurses and doctor. I got a bone scan to check for osteoporosis. He says cancer is unlikely.

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. Colleen H
      - Colleen H replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

      Does anyone know if that includes scrambled eggs and healthy smart butter (,gluten free) I add a very tiny amount of margarine less than a teaspoon. I did no't have any bread It just seems like no matter what I eat my stomach and nerves over fire and here comes a host of horrible symptoms. My lower abdomen feels horrible, my right...
    2. dixonpete
      0

      Inoculation and video development

    3. Juliane
      - Juliane replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
    4. RMJ
      - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight. My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she...
    5. Colleen H
      - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

      Hello I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet. Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,842
    • Most Online (within 30 mins)
      7,748
    Julia Duffee
    Newest Member
    Julia Duffee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Stomach burning and neuropathy

      By Colleen H · Posted

      Does anyone know if that includes scrambled eggs and healthy smart butter (,gluten free) I add a very tiny amount of margarine less than a teaspoon.  I did no't have any bread    It just seems like no matter what I eat my stomach and nerves over fire and here comes a host of horrible symptoms. My lower abdomen feels horrible, my right leg thigh muscle.. very odd. Jaw pain. Burning feet , joint pain , you name it  The anxiety just creeps up into brain fog. I don't think I could explain this to anyone who is unfamiliar.  Also,  I most likely will not remember posting this until I check it.  This is highly unusual for me because I have an excellent memory.  One weekend before I knew anything about celiac I lost an entire weekend from severe brain fog, confusion, pain, etc.  I honestly thought I was losing my mind. When I think back I recall eating a lot of PBJ sandwiches and turkey sandwiches.  Once again did not know about gluten.  I was just too sick to cook. Do people fast during attacks ?? It seems horrible to keep going through this. I hope I'm not causing my own problems... I wonder if I should fast because I'm not eating gluten .  Chicken ,  scrambled eggs no milk , canned carrots,  gluten free low sugar low fat Greek yogurt which I already posted about 😞 Any suggestions I am open... I am bedridden when this happens to me.  Thank you Celiac community. 🙏🏻❤️      
    • Juliane
      Stomach burning and neuropathy

      By Juliane · Posted

      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
    • RMJ
      Nausea

      By RMJ · Posted

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Stomach burning and neuropathy

      By Colleen H · Posted

      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
×
×
  • 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.