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

Still Eating Wheat


jknnej

Recommended Posts

jknnej Collaborator

hi guys,

I decided, since I can't get tested (upper endoscopy)until March due to my busy work schedule, I'm going to eat a small amount of wheat per day (like one graham cracker)so I don't become too sensitive. after all, my blood test was positive but only one of the three panels was positive. I do think i have celiac disease, though, since my tummy has felt much better since stopping wheat. Or even if I don't have celiac disease I must have an allergy to wheat. But i do have all these other weird symptoms since i went OFF wheat which is the exact opposite of many of you who get them when you actually EAT wheat. i've been having tremors, light headedness, fogginess, vision changes, a little nausea sometimes, every once in a while hearing my heartbeat in my ears. This week my back has been tender to the touch and little spots on my body feel bruised. weird. i don't know what the heck is happening and neither do the doctors!

I mean, if I test negative, then I have been going thru all of this for nothing. I don't want to have to reintroduce gluten after two months, I think I would be very sensitive at that point and it would be a lot harder.

what do you guys think?

I'd love any advice! Jennifer


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

If you're going to get a positive endo., you need to eat a lot more wheat than one graham cracker a day...and you should start as soon as possible eating it so that you can mess up your intestines enough for the test.....I know that sounds terrible. Of course, your other option is to not have the endo. at all, which is fine as long as you believe that the bloodwork is correct, are willing to stay on this diet your whole life, and won't doubt that you have celiac years in the future...it's a tough choice, though, if you have terrible symptoms. It was easy for me, because I was just diagnosed with bloodwork when a biopsy was recommended...so I just had to stay on wheat a couple more days, but the damage was already done.

jknnej Collaborator

the only reason I am doubting the blood work is because only one test came back positive out of the three and my doctor told me that means only a 50% chance of celiac disease. He said if all 3 came back it would be, like, 97%.

I've only been gluten-free for two weeks and before that I ate wheat all the time so I'm pretty sure my insides would still be messed up.

What do you think?

celiac3270 Collaborator

Oh, sorry...I thought you said you had been gluten-free two months :D ...yes, I'm not a dr., but I think that would suffice.

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
      132,378
    • Most Online (within 30 mins)
      7,748

    mlenn51
    Newest Member
    mlenn51
    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.