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 Celiac.com!
    eNewsletter
    Donate

New Celiac Survivor Seeks Experience And Advice


erika29

Recommended Posts

erika29 Newbie

Hi everyone,

While I haven't been "officially" diagnosed with Celiac yet, all the signs point in that direction (i.e. mom with Celiac, blood tests are positive, and reactions to certain foods). To be proactive, I've attempted a gluten-free diet as an "experiment" for about a week now, and while overall I've felt improvement, I still have days with symptoms. I was curious to hear from other Celiac survivors--how soon (or not soon) after you began a gluten-free diet did you become symptom-free? Was it a gradual or more immediate process? Does it vary with each individual case, and if so what can I expect for an average? If I still have symptoms, should I be worried that it's not Celiac?

Thanks for your time and insight!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Erika, it sounds like you're doing just great on the gluten-free diet. It can take up to two years to be actually symptom-free. Nobody can accomplish that in a week!

Also, have you made sure you really don't get any gluten from anything? Have you checked all your personal care items (soap, shampoo, conditioner, lipstick, toothpaste, lotion etc.) for gluten ingredients (like wheat germ oil, barley extract, oat bran)? They can keep you glutened.

Another thing is appliances, like your toaster. You absolutely need a new one if you eat gluten-free bread, you can't clean it well enough to be safe. The same goes for plastic colanders, wooden cutting boards, wooden cooking spoons and scratched non-stick cookware.

If you had a positive blood test, and are feeling better on the gluten-free diet, then you have a positive diagnosis, no biopsy needed.

Here is a link to Nini's website, who has compiled a Celiac newbie kit, that is really invaluable. Scroll down to the bottom, where you can either download the whole kit as a zip file (for some people one of the files wouldn't download), or the other link has the individual files. Open Original Shared Link

Here you will find a lot of things that would take you quite a long time to research on your own.

Link to comment
Share on other sites
eKatherine Rookie

I think it depends on how sick you are. If you've just got a little intolerance, you might feel all better within a week. But if you've got a lot of healing to do, you may not feel completely well until you have been truly gluten-free for quite a while.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,986
    • Most Online (within 30 mins)
      7,748

    Mazzamaloo
    Newest Member
    Mazzamaloo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • TessaBaker
      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    • Celiac16
      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes which would be a better indication if I was deficient or dependent on it but everyone dismisses it (there are know genetic mutations where you need to take it daily for life). I have looked into Thiamine Responsive Megablast Anemia and I have a lot of the more mild symptoms of the disease that manifest when thiamine isn’t given to the patient such as optic neuritis… I just find the parallels interesting. i think that celiacs could be a side issue of inflammation that resulted from vitamin deficiencies. I was eating a lot of sugar leading up to my diagnosis and since eating gluten free didn’t make me feel much better, I’m wondering if this was more the underlying issue (sugar heavily depletes b1). I usually take 1.5g thiamine a day.
    • Fluka66
      Thank you for your welcome and reply.  Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen. However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system.  So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific.  Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem . Wondering what damage has been done over the years. Many thanks for your reply. Wishing you the very best.    
    • trents
      Welcome to the forum community, @Fluka66! Did you realize that the vast majority of all canned soups use wheat starch as a thickener, including such common commodities as Campbell's tomato soup?
    • Fluka66
      Hello. Any help would really steady my nerves right now. I realised recently that certain food left me in agonising pain so eliminated from my diet. I also have a swollen lymph node. My very caring Dr did some blood tests and I went back the other day to see another equally caring Dr . She looked at the test results one result has come back with something wrong. It came very fast so I'm afraid I didn't catch what it was. Anyway the urgent referral to ENT. She did say as I had already eliminated gluten it wouldn't say anything on the results and neither Drs nor I were prepared to reintroduce gluten . I've just had some tomato soup and again in agony only thinking this must have aggravated maybe existing problems. Does anyone know what I'm facing now ? My swollen lymph node , pain when eating gluten and lactose and I'm assuming the acidity of tomatoes triggering pain.  I'm trying to stay calm and to be honest I've been in intolerable pain at times rendering me unable to stand up straight but I've always just got on with it . Guess I'm reaching out and would really appreciate any wise or unwise words at this stage. Wishing you all the very best as you live with this illness. Fluka66  
×
×
  • Create New...