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

Preparing For Testing. Need Advice On Diet & Self-Care


CaliSparrow

Recommended Posts

CaliSparrow Collaborator

Hey folks,

This gluten-free journey started for me in October and it's been quite the roller coaster ride. I am going to see a gastroenterologist who specializes in Celiac on 1/15. I believe it would be prudent to genetic test first since Celiac can be ruled out with the genetic test and then I could consider it a wheat intolerance. Any advice there?

Also, I've been eating gluten for a week now. It's tough to go through. Any advice on how much gluten I need to eat? My appetite is suffering.

I'd love to know your different applications for self-care as well. My body is hurting pretty good.

Any advice you all can give would be most appreciative. There are plenty of people who are telling me there's no need to go through with it. I need to hear from the other side.

Thanks, Cali


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



Celiac.com Sponsor (A8-M):



CaliSparrow Collaborator

NEVERMIND.

My husband just threw a fit about me being on gluten because he sees such a difference. He thinks there are more pitfalls in seeking answers through the medical community than in being resolute about staying gluten-free and watching my health improve despite the doctors.

Today begins my first day back on the gluten-free journey. I am looking forward to not wanting to hang myself.

Officially self-confirmed celiac.

nvsmom Community Regular

Hope you continue to improve on the gluten-free diet... and welcome to the club.

mushroom Proficient

A genetic test can't really rule celiac out since there are other genes associated with celiac than the two commonly accepted genes; and it certainly cannot rule it in, so will do nothing to resolve the issue. I think your husband is probably right' You can mess around with doctors forever but if you are improving gluten free enough for him to notice it would seem you are on the right track. In the end, only you can decide whether a formal diagnosis is necesary for you, though and whether you are prepared to go through what it takes to get it. :)

CaliSparrow Collaborator

It baffles me that before 1960, doctors diagnosed celiac by eliminating gluten from someone's diet, reintroducing it and noting a reaction. Now, everyone has to go through a myriad of tests which may be inconclusive.

Thanks for the correcting my misunderstanding of the genetic test. I would have been very bummed finding this out after the fact.

My heart goes out to everyone going through this process.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,065
    • Most Online (within 30 mins)
      7,748

    Hoops
    Newest Member
    Hoops
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
    • Colleen H
      Hi everyone  This has been a crazy year so far... How many people actually get entire sensory overload from gluten or something similar ?  My jaw is going nuts ..and that nerve is affecting my upper back and so on ...  Bones even hurt.  Brain fog. Etc  I had eggs seemed fine.   Then my aid cooked a chicken stir fry in the microwave because my food order shorted a couple key items .   I was so hungry but I noticed light breading and some ingredients with SOY !!! Why are we suffering with soy ? This triggered a sensitivity to bananas and gluten-free yogurt it seems like it's a cycle that it goes on.  The tiniest amount of something gets me I'm guessing the tiny bit of breading that I took one tiny nibble of ...yikes ..im cringing from it .. Feels like my stomach is going to explode yet still very hungry 😔  How long does this last?! Thank you so much 
    • Scott Adams
      This is an older article, but may be helpful.  
    • gfmom06
      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
×
×
  • 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.