Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Doctor/dietician Appt Tomorrow...


Lilypad517

Recommended Posts

Lilypad517 Rookie

Hello all. I am pretty new here. I was diagnosed with biopsy confirmed celiac a couple weeks ago, and my follow up appointment as well as a meeting with a dietician is tomorrow. I am very nervous, but hopeful for more information about my individual needs. I have been gluten free for 3 months, and feel better. However, I was still getting glutened frequently despite careful research and diligence to a gluten free DIET. I say it like that because my md suggested i check my daily medicines and voila! Gluten. Every day. For the past year I have been on them. I got them changed last week and feel amazing. My only complaint is severe indigestion after I eat. Like my stomach doesn't move the food out as quickly as it shoud, leading to fullness, burping like an old man. It doesn't feel like a gluten attack, those knock me out and put me in the bed for days! I hope it is just my body hasn't healed yet.

Any advice for my appointments? This has been the most excited about it I have been since diagnosis because I will FINALLY get some answers! Thank you all, browsing this board has been helpful in so many ways!


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



Celiac.com Sponsor (A8-M):



Booghead Contributor

No advice here, but good luck! B)

bonnie blue Explorer

Hello and welcome, after reading this, your symptoms, the indigestion, fullness, and burping, talk to your doctor about gastroparesis (sp sorry) or slow stomach. They do have a very simple test for this, and basically you eat smaller meals 6 times a day, and they put you on a PPI for the indigestion. Again please just an observation, but be an advocate for your health. I hope all goes well for you, let us know how it all comes out. :)

Lilypad517 Rookie

I had thought that. Is it a sign I am still getting gluten? Or an effect of damage? I feel great aside from that!

bonnie blue Explorer

I had thought that. Is it a sign I am still getting gluten? Or an effect of damage? I feel great aside from that!

Again just a suggestion, my sister-in-law has this and she is basically maintaining a good lifestyle with the dietary changes. And if your not having your regular gluten side effects I wouldnt think that you are getting gluten in your diet. Talk to your doctor about this, and your dietician they should be able to help you out. Good luck and again let me know how it turns out.

mushroom Proficient

It could just be a combination of taking time to heal, and slow motility. It could also be that our pancreas is not producing enough digestive enzymes, and an enzyme supplement might help with this.

Make sure that your doctor is aware that he needs to check your nutrient levels if he has not done so already - things like Vit.D, B12, folate, iron/ferritin, potassium, magnesium. Also your thyroid function. These can all be affected by the malabsorption of celiac disease.

Good luck with your appointments. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,158
    • Most Online (within 30 mins)
      7,748

    Elaine Gilbert
    Newest Member
    Elaine Gilbert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      My daughter, age 48, has Down syndrome, hypothyroidism, Addison's disease, and Celiac disease, which was diagnosed based on blood tests last July.  After a small intestine biopsy last fall, we were told that she has severe celiac disease.  She is taking both levothyroxine and leothyronine for her hypothyroidism and both hydrocortisone and fludrocortisone for Addison's disease.  She also takes Folic acid, magnesium, vitamin B-12, DHEA (DAGA), and a multivitamin.  In July, she started on a gluten-free diet and is very compliant.  She has had constipation and diarrhea issues all her life and now controls the constipation with Miralax, prunes, and apricots.  Shel has only very occasional syncopes or vasovagal events and muscle aches in her upper back and neck.  She drinks 4-6 or more 12 oz bottles or of liquid per day.  Her doctor has just suggested adding electrolytes to one of those bottles daily.   We are sorry to learn about the issues you are having and would like to stay in touch.  We do not know anyone else with both Addison's disease and celiac disease.  So far, she has no recognizable symptoms.  We are doing our best to keep her gluten-free, but have no way of knowing if she has had an exposure to it unless we catch it ourselves.  For example, a few weeks ago, a restaurant mistakenly breaded her fish, and I did not notice it until she had eaten most of it.  She had no identifiable symptoms of the exposure then or days later. By the way, the reason she was screened for Celiac disease was that her blood lipase levels were unexplainably high.  They still are.  We have no idea why.    
×
×
  • Create New...