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

New to this , need some info please

Feesa

Recommended Posts

Feesa Apprentice
Feesa
Posted

Hello everyone or anyone,

I was just told a week ago that I am Celiac....Nice news  to find out because I thought I had been dying for about 8 months. Trips to the hospital with gas pain in chest and arms. Headaches and also major energy problems. How long should or could it take to start to feel better? I know It's going to take time however I have to take pills to keep me calm. I am finding that now when I eat that the gas is worse it now sits in my shoulders and back as well as my chest...Please tell me this has happened to other people...Any info would be amazing.

 

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

Celiac.com Sponsor (A8-M):


Ennis-TX Grand Master
Ennis-TX
Posted

I hear you, I thought I was dying going crazy, and was running a bucketlist prior to dia. My issues were a mix of it effecting my brain, nervous system, guts, etc. My primary issues was the brain fog, confusion, brain damage, nerve damage, and bad gas and constipation lasting 8-10 days.

The worst of it will pass with the gas in 2-6 weeks, it can take 6 months and up to 2 years for significant damage to heal. The issues with the stress come from the inability to absorb certain nutrients. You will have to take a b-vitamin supplement  and probably a magnesium supplement to help with them. There are many others such as folate, iron, vitamin D, etc. I would read up on them and see if these are likely to be them. You can check the links below to see what I do to manage mine and my diet.

Welcome to the forums, this is great place to find out about many of the issues associated with this disease and get help. There is a huge learning curve to the diet and you will have to clean out your house, fridge, and change a lot of things out to go 100% gluten free without contamination issues. Things will get a tad worse before they get better, you might develop other food issues or find out you have some. But in the end you will prolong your life, and after some healing start to enjoy life more and more.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

 

Feesa Apprentice
Feesa
Posted
  • Author

Thank you so much for this info!! I have a place to start, Like most people I was told yes you are Celiac and then nothing..I get to see the Dr in July but have been running blind with this. I am happy to see this and know if I have questions I can ask, Someone may have ideas!!

 

cyclinglady Grand Master
cyclinglady
Posted

Welcome!  Glad you found us.  It is nice to have access to people who are in the same boat.  Ennis has provided you with some good links.  Questions?  Just ask!  

Healing?  Takes time.  Everyone is different.  

 

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.