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

Going Downhill Fast

bartfull

By bartfull
in Coping with Celiac Disease

Recommended Posts

kareng Grand Master
kareng
Posted

Holy cow! I'm crying again. But this time it's because I found out my friends are organizing a fundraiser so I can get that MRI. I feel TERRIBLE about taking charity - I've always been one to give charity, not recieve it. But I feel wonderful knowing that my friends care about me so much. And it WILL be good to finally find out what this is - even if it turns out to be cancer. At least I'll know.

That's so nice about your friends!

If you are paying cash for the MRI, you might be able to get it cheaper. Someone paying at the time of service costs the hospital less than billing insurance companies or managing people making payments.

Keep trying to eat the things that aren't your worst foods. Not eating just makes you feel worse & messes up your digestion more.

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

Holy cow! I'm crying again. But this time it's because I found out my friends are organizing a fundraiser so I can get that MRI. I feel TERRIBLE about taking charity -

It's not charity when it's from your friends. That's called love. :)

bartfull Rising Star
bartfull
Posted
  • Author

And oh, how I love them all back! As crummy as I feel, I think I am the luckiest person in the world!

UKGail Rookie
UKGail
Posted

Bartfull - just wanting to send my best wishes, and hope that you can get through this soon. I'm thrilled that your friends are helping you with the doctor's fees.

lynnelise Apprentice
lynnelise
Posted

I hope you are able to get your MRI asap! You are so lucky to have such good friends! Don't hesitate to let them help! I know if I had a sick friend I would want to be able to ease their burden! Keep us posted!

cmoore Apprentice
cmoore
Posted

"Candida" perhaps. Candida overgrowth can cause a countless number of issues including food intolerance's. I would research that as well.

This sums up what I have read myself .... I say this as I reel from my own issues and Im trying to sort it all out myself.

Gluten intolerance and issues with Candida can overlap and be devastating, unless your aware of BOTH and actively address both problems.

For what its worth.

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

      That test is saying that your daughter is not making normal amounts of any IGA antibodies. She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses. She is deficient in total IGA, so the test for antigliadin antibodies is not valid. The test was a failure. The test only works if all different kinds of antibodies...
    2. knitty kitty
      0

      Vitamins I Take

    3. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

      @hjayne19, So glad you found the information helpful. I know how difficult my struggle with anxiety has been. I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex. It contains the easily activated forms of B vitamins needed by people with the MTHFR...
    4. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

      Welcome to the celiac.com community @pothosqueen! Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run...
    5. pothosqueen
      - pothosqueen posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,993
    • Most Online (within 30 mins)
      7,748
    Tchudi
    Newest Member
    Tchudi
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Help understand results

      By knitty kitty · Posted

      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Positive biopsy

      By trents · Posted

      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
    • hjayne19
      Mallorca Guide

      By hjayne19 · Posted

      This is great thank you very much @Scott Adams
×
×
  • 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.