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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,897
    • Most Online (within 30 mins)
      7,748

    Guy driech
    Newest Member
    Guy driech
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Alibu, There may not be textbook intestinal damage in the early stage of Celiac Disease!!! Keep in mind that the endoscope used can only reach about a foot past the stomach, while the small intestines are twenty-two feet long!  Damage can be patchy or out of reach of the scope.  Early celiac disease may not show damage at all. Don't compare your tTg IgA numbers with others.  Every lab uses their own range values.  Tests from different labs are not using the same scale and shouldn't be compared with other people's numbers from a different lab.   You've got the Celiac genes and the positive antibody test and the EMA test.  Next step is a Gluten Free diet trial and look for improvement.  Celiac Disease can be diagnosed using genetic testing and response to a gluten free diet!  I'm seronegative, but DQ 2.5.  My doctors were clueless.  They didn't see any classic textbook damage, so didn't bother to biopsy.  Ack!    This study followed people who showed no or little damage at first....they accrued more damage. Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/ There's a move to be less reliant on endoscopy for diagnosis. Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment https://pmc.ncbi.nlm.nih.gov/articles/PMC12074562/ Welcome to the tribe!
    • JulieB11
      I was introduced to a new-to-me alcoholic beverage yesterday, a grapefruit radler. The bartender said it was sugar- and gluten-free and I trusted him. After I ordered a second drink, I had the good sense to look it up: it’s half beer! Usually wheat beer. BUT it gave me no symptoms—no bloating, fatigue, stool issues. Anyone else have this experience?
    • Capt Jules
      are these gluten free, I know that they don't devote space and there could be cross contamination but can they be eaten by celiac person?  
    • trents
      knitty kitty brought up something that also occurred to me. Namely, the reason you don't like bread and pasta may be that your body has been instinctively telling you, "this is harming me" and so you avoid it. Cake, on the other hand, has less gluten and lots of other goodies like sugar and butter and chocolate that mask what gluten there is.
    • knitty kitty
      @Shining My Light, While you're trying to decide on your next steps on your journey, I suggest you have a DNA test to look for Celiac genes.  Your genes don't change, so you do not have to be eating gluten for it.  If you have even one Celiac gene, it's more likely to be celiac disease, than NCGS.  TTg antibodies do not occur in NCGS.   There are different amounts of gluten in different breeds of wheat.  Wheat used for cookies and cakes and tortillas do not contain as much gluten as wheat used for bread and pizza crust.  Look at the crumb in cakes and tortillas.  There's only small bubbles. Gluten is in the matrix forming those bubbles.  Compare those to the big bubbly holes in artisan bread and chewy pizza crust.  To get those big holes, more stretchy elastic gluten is used.   You are subconsciously avoiding those types of foods with large amounts of serious gluten in them.  Consider including these types of high gluten foods in your gluten challenge before your antibody retest and endoscopy.  Keep a food mood poo'd journal to record how symptoms change.   Anxiety, headaches and joint pain are symptoms of Celiac that occur outside the digestive tract, these are extraintestinal symptoms of celiac disease. "Could I really possibly follow a gluten free life as close as I follow Jesus?"    Yes, He's been my constant companion and guide on this journey which has brought us to the forum so we can help others on their journeys.   References: Celiac Disease: Extraintestinal Manifestations and Associated Conditions https://pmc.ncbi.nlm.nih.gov/articles/PMC6895422/ Psychiatric and Neurological Manifestations of Celiac Disease in Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC9984242/#:~:text=celiac disease%2C a multiorgan disorder with,life [21%2C22].
×
×
  • Create New...