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. Adeling
      - Adeling commented on Scott Adams's article in Product Labeling Regulations
      2

      Global Experts Recommend Gluten Reference Dose: What It Means for Celiac Safety (+Video)

      What's missing, for me, from this article, is a timeline for implementation in countries. Western countries are often quite slow to implement, and some countries I've been to have no labelling whatsoever...
    2. Sue7171
      - Sue7171 replied to Ginger38's topic in Related Issues & Disorders
      24

      Shingles - Could It Be Related to Gluten/ Celiac

      My husband just had shingles going on 7 weeks now. We had been putting Vaseline on the blisters and lidocaine cream and he was prescribed an antiviral. Also he still has the nerve pain it was bad and is getting better it is his upper left torso. His dr prescribed gabapentin 300mg 3x a day and he's also taking naproxen 500ng 2x a day and tylenol 1000mg every...
    3. sc'Que?
      - sc'Que? commented on Scott Adams's article in Product Labeling Regulations
      2

      Global Experts Recommend Gluten Reference Dose: What It Means for Celiac Safety (+Video)

      This is FANTASTIC--especially that they are recognising barley and (potentially) oats as sources of gluten/contamination! Now if only we can get labeling guidelines to clarify "spices" and "natural flavors" for those of us with other severe allergies.
    4. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      What's your daily meals? Protein bars?

      What are your daily meals? Guilty pleasure snacks? Protein bars? I feel when looking for gluten free foods they are filled with sugar cholesterol. Looking for healthy gluten-free protein bars. Something to fill since sometimes I feel like not to eat anything. Especially if on vacation and unsure of cross contamination I figure go with a salad and protein...
    5. trents
      - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,176
    • Most Online (within 30 mins)
      7,748
    sandragonez962
    Newest Member
    sandragonez962
    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

    • Sue7171
      Shingles - Could It Be Related to Gluten/ Celiac

      By Sue7171 · Posted

      My husband just had shingles going on 7 weeks now. We had been putting Vaseline on the blisters and lidocaine cream and he was prescribed an antiviral.  Also he still has the nerve pain it was bad and is getting better it is his upper left torso. His dr prescribed gabapentin 300mg 3x a day and he's also taking naproxen 500ng 2x a day and tylenol 1000mg every 6 hrs. Hope this helps  The lidocaine cream is by tylenol and is available in a large tube on Amazon or at Walmart 
    • xxnonamexx
      What's your daily meals? Protein bars?

      By xxnonamexx · Posted

      What are your daily meals? Guilty pleasure snacks? Protein bars? I feel when looking for gluten free foods they are filled with sugar cholesterol. Looking for healthy gluten-free protein bars. Something to fill since sometimes I feel like not to eat anything. Especially if on vacation and unsure of cross contamination I figure go with a salad and protein bar to fill and play it safe.
    • trents
      Labs ? Awaiting in person follow up with my GI

      By trents · Posted

      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
    • Seabeemee
      Labs ? Awaiting in person follow up with my GI

      By Seabeemee · Posted

      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
×
×
  • 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.