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

Symptoms Over Time


Mama Melissa

Recommended Posts

Mama Melissa Enthusiast

Hey Guys,

I was at my monthly celiac meeting and we got to talking about glutening symptoms.I was shocked to hear half of the people at the meeting had no symptoms atall ,some of them only got diagnosed because a relate was diagnosed.What i wanted to know is after being on the gluten free diet for a long time im talking yearsss do your symptoms lessen or eventually go away???I kno i have heard you get more sensitive at first, but how could people who started off with worse damamge than i had have no symptoms and i had stomach problems with less damage soo confused:(


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



Celiac.com Sponsor (A8-M):



Loey Rising Star

Hey Guys,

I was at my monthly celiac meeting and we got to talking about glutening symptoms.I was shocked to hear half of the people at the meeting had no symptoms atall ,some of them only got diagnosed because a relate was diagnosed.What i wanted to know is after being on the gluten free diet for a long time im talking yearsss do your symptoms lessen or eventually go away???I kno i have heard you get more sensitive at first, but how could people who started off with worse damamge than i had have no symptoms and i had stomach problems with less damage soo confused:(

Hi Melissa,

Some of us are more sensitive than others. I, myself, have an ulcer and IBS in addition to Celiac. The people in your support group who don't have symptoms are very lucky. I can't answer your question about how long it takes before our symptoms go away because I was only diagnosed last May and have the added medical issues. I just wanted to make sure there was an answer to your post so you'd know you're not alone. I know that someone with more experience and more answers will post a response soon. Just know I'm here if you need to vent.

Loey

Mama Melissa Enthusiast

Loey im sorry you have the additional problems and likewise i am here for you to vent as well:)We will get threw this i'm thankful for you guys xoxoox

AZGirl Rookie

Hey Guys,

I was at my monthly celiac meeting and we got to talking about glutening symptoms.I was shocked to hear half of the people at the meeting had no symptoms atall ,some of them only got diagnosed because a relate was diagnosed.What i wanted to know is after being on the gluten free diet for a long time im talking yearsss do your symptoms lessen or eventually go away???I kno i have heard you get more sensitive at first, but how could people who started off with worse damamge than i had have no symptoms and i had stomach problems with less damage soo confused:(

I am brand new to this, but I am shocked about how intense my reactions are. A few months ago I didn't feel well at all, but I was getting through my days eating gluten and not ever connecting the dots of what was making me feel so bad.

Yesterday I got glutened after being gluten free for only 4 months and my head was spinning with all the things that were happening to me just from "trace" amounts of gluten. It was overwhelming and truly scarey.

Sometimes when I read through the forums I get nervous thinking that other intolerances are sure to follow. It feels like everyone has more than just one thing they have to watch. As far as I know I only have gluten and an allergy to pineapple to beware of. I hope it stays like that forever, but I am wary that Celiac Disease is just the doorway to other things I don't want.

Sorry to be a downer, but it's my very real concern.

Loey Rising Star

Loey im sorry you have the additional problems and likewise i am here for you to vent as well:)We will get threw this i'm thankful for you guys xoxoox

Back at you girlfriend. we WILL get through this together. And we're lucky enough to have a whole community to support us. BTW, I just moved from NJ. If you feel like it PM me where you live. I'll be going back to visit this summer. Perhaps we could meet. Patti (jerseyangel), that goes for you, too!

XXOO

Loey wub.gif

P.S. Enjoy your beautiful babies. My baby is finishing his first semester of college!

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

      Help understand results

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

      Insomnia help

    3. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

    4. - pothosqueen posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,990
    • Most Online (within 30 mins)
      7,748

    pothosqueen
    Newest Member
    pothosqueen
    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
      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
      @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
      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
      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
      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.