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

Looking For A Doctor Who Cares In Ab Or Sk Canada


jlee2

Recommended Posts

jlee2 Rookie

Hi all!

I am looking for a doctor who takes time to listen and has experience with Celiac patients. I am at a loss of how to start feeling better after 10+ yrs of suffering. Here is a bit of my story;

I am 22 and at the age of 12 I developed severe stomach problems -- after much testing and frustration they decided it was lactose intolerance. I stopped all dairy. After not feeling better they diagnosed me with IBS and I was told there is nothing they could do for me basically go home and try to figure out my trigger foods. I never did start feeling better so I started getting passed around different physicians and Gastro's none really caring to help all that much. Started getting depressed. Took myself off gluten. Finally found a doc who cared enough to order a scope but it came back neg for celiac as I was not eating gluten. I got a parasite from swimming in a river, then got C Diff from antibiotics. (what a great summer that was). Started eating gluten again and was formally diagnosed with celiac. Since then I have been extremely strict and growing up my family was great with it (2 aunts have celiac so we all knew what it was about). I go through extremely bad phases still where somedays I will get so sick I have to be hospitalized for a week due to severe dehydration. I never know if it is from the celiac or IBS. I have had 4 gastroscopy's, 2 colonoscopy's, 1 endoscopy, 2 CT scans, an MRI, a radio active white blood cell scan, 2 ultrasounds, barium x-rays, and thousands of blood tests. I have seen the best doctor at the U of A Dr. Fedorak and he called me his mystery patient and left it at that. I have seen holistic healers nutritionists etc. If anyone can help please please do so! I am sick and tired of being sick. Thankfully my boyfriend of 5 years has supported me through everything and almost gone gluten-free himself lol!

I am SO sorry for the long post!!


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jordan Carlson replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Raw Meat Craving

    2. - knitty kitty replied to GardeningForHealth's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      82

      10 years later, my celiac is progressing

    3. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Raw Meat Craving

    4. - Blue Roan replied to Blue Roan's topic in Related Issues & Disorders
      4

      Lymph nodes in neck + thyroid issues

    5. - Scott Adams replied to Dawn R.'s topic in Related Issues & Disorders
      1

      Gluten Ataxia


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,916
    • Most Online (within 30 mins)
      7,748

    nonleadedmilk
    Newest Member
    nonleadedmilk
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jordan Carlson
      Hey there @knitty kitty! Thanks for checking in. Things are not really going as planned for myself unfortunately. As much as I feel better than I did while eating gluten, I still seem to be reacting to trace amounts of gluten in gluten free foods. I constantly break out in rashes or hives after eating. My dermatitis is constantly flaring up. I take every precaution possible to be as gluten free as I possibly can and have simplified my diet as much as I possibly can but still cant get past this point in my recovery. If this is the case, I believe it would be considered non-responsive Celiac Disease or Refractory Celiac Disease. The only time I have ate gluten purposely in the last year was for the 3 weeks leading up to my endoscopy for diagnosis. Aside from that, the last year has been a constant disappointing effort to be gluten free with the same result of getting stuck at this point. I have a appointment with my doctor next week to discuss some treatment options and what the next steps are in trying to get my body to push past this point.   I will keep you posted! 
    • knitty kitty
      @GardeningForHealth, How are things going for you?   I found another topic you might be interested in... To Be or Not to Be a Pathogen: Candida albicans and Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6906151/
    • knitty kitty
      @Jordan Carlson, How are you doing now?  Your post slipped by, but I had to let you know you weren't alone.  I've had cravings for raw meat my whole life.  It's due to being low or deficient B vitamins, specifically Thiamine.  Meat is a great source of B vitamins.  Cooking meat destroys some of the vitamins, so a craving for raw or rare meat shows up.   Thiamine and Niacin make digestive enzymes that will help you digest fats.  Thiamine will help improve gastroparesis, anxiety, vertigo, and heart palpitations.  Niacin will help Dermatitis Herpetiformis.  I get dermatitis herpetiformis blisters on the palms of my hands, too. Really active people (especially if outdoors in hot weather) need additional Thiamine.  If a high carbohydrate diet is eaten, additional Thiamine is needed, too.  I take Benfotiamine, a form of Thiamine that helps heal the digestive tract.  I also supplement magnesium because Thiamine and magnesium work together.   Hope you can update us on how you're doing.  
    • Blue Roan
      @RMJ@Scott Adams@knitty kitty, Thank you for all of your responses, tips, and suggestions. I'm very grateful that this website exists. It makes me feel a lot less alone in my celiac journey!  The endocrinologist had me do a neck ultrasound just to be safe. Thankfully, thyroid and lymph nodes came back normal. knitty kitty, my Vitamin D is on the higher end of normal, but I will definitely consider the dentist route next time I have my checkup if I'm still noticing issues. Thank you! Scott, thanks for suggesting the ENT. I may consider seeing one if things don't resolve on their own. I am thankfully feeling a bit better now, so hopefully, this is just some sort of residual celiac inflammation like you mentioned, Scott. After all of the numerous tests and clinical visits I've had all year, I'm going to give my body (and wallet) a break for a few months to rest and heal without the stress of doctor appts/labwork and whatnot. Perhaps the health anxiety is also contributing to some of my symptoms.  Thank you once again for sharing your stories.  
    • Scott Adams
      Welcome to the forum. A search for "ataxia" in our forum shows 718 results: https://www.celiac.com/search/?q=Ataxia&quick=1&type=forums_topic We also have an article category dedicated to summarizing research on this topic: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ Do you have a specific question about it?
×
×
  • Create New...