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

Need A Little Advice Please:)


madgracemom

Recommended Posts

madgracemom Newbie

I have not been diagnosed with celiac but I am pretty positive I have at least a sensitivity to gluten. For one year I suffered from upset stomach and constipation and for the past two years I have suffered from abdominal pain and diarrhea. I stopped eating bread and pasta for a week and already noticed a difference. After cheating for one night I woke up with stomach pain and diarrhea for the entire day. I also have endometriosis, a history of miscarriage, tooth decay, heart palpitations (which I am now taking meds for) and am extremely overweight. I have insurance but my out of pocket cost for the test would be too much. Do you think I should just stick to what I know helps without getting an official diagnosis?  Any insight would be helpful.


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



Celiac.com Sponsor (A8-M):



w8in4dave Community Regular

In my opinion I would get the test. That way you would know for sure and not be tempted to have a lil here and there. My daughter goes on a gluten-free diet , then decides it's too expensive and goes off, then feels sick and goes back on it. Her Dr. will not give her the test. My suggestion is If you decide to not get the test, to be very strict on the diet. But it is a choice. There are alot of people here who have not gotten the test and are doing very well.

nvsmom Community Regular

I too would get tested before you go gluten-free because if you decide, at a later date, that you would like to know whether you have NCGI or celiac disease, you will need an 8-12 week gluten challenge of 1-2 slices of bread per day - that's two to three months of feeling poorly. Yuck!  It might be wiser to resume gluten for a week or and then get tested. If the tests are positive, then it's celiac disease, and if it's negative, then you know you have non-celiac gluten intolerance (NCGI).

 

If you do go gluten-free now, make sure you give the diet a few months before you judge it's effectiveness. It can take quite a while for all symptoms to improve.

 

Best wishes.

LauraTX Rising Star

Getting the testing done now is investment in peace of mind for later.  Knowing an official diagnosis can help your family and offspring with answers to any possible related problems.  A lot of times you can get a payment plan going for procedures like an endoscopy, honestly it is worth begging, borrowing, and doing whatever you can so you can cross that task off permanently.  

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Ginger38 posted a topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Russ H commented on Scott Adams's article in Latest Research
      5

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    4. - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Coeliac UK Research Conference 2025

    5. - Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders
      5

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,374
    • Most Online (within 30 mins)
      7,748

    Lynt
    Newest Member
    Lynt
    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

    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
×
×
  • 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.