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 Here

Pisces1974

Recommended Posts

Pisces1974 Newbie
Pisces1974
Posted

Hi everyone,

My name is Carol. I'm 31 and I've been struggling with gi symptoms since I was very young. I had my gallbladder removed in 2003 due to chronic vomiting. After the surgery I was told that my gallbladder was seriously diseased and definitely needed to come out. Shortly after that the vomiting returned. I was also diagnosed with Sarcoidosis around that time. Since then the vomiting and diarrhea have continued to get worse. Lately I can barely hold anything down and I'm nauseated and have abdominal pain all the time. I went to see the gi yesterday and had the blood tests done right after. Now I'm just waiting. I'll be completely shocked if I don't have celiac disease. I get hot/cold flashes, nerve tingling and pain in my leg, and I have lots of problems with my teeth.

I've been accused of having bulimia due to the vomiting being so bad. If I was bulimic I probably wouldn't be laying on the bathroom floor praying to God for a diagnosis when things get really bad. That's happened many times, when I've been too weak and unsteady to stand up.

I'm actually hoping and praying for a diagnosis of celiac disease. At least then I can start trying to heal the damage. I've already tried some of the gluten-free foods so I would know what to expect. Of course, being a fat girl, I had to go right for the Kinnikinnick brownies lol. They are awesome :D

Sorry this got so long. I just needed to tell this stuff to people who understand.

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

Celiac.com Sponsor (A8-M):


Larteun Newbie
Larteun
Posted

I can relate to you hoping celiac disease is the cause of your symptoms. I just had the test 2 days ago and started a gluten-free right after. I've been through countless testing with no results and after awhile you start hoping the next test will comfirm something, even if serious, just to get a handle on your agony.

I intend to stay gluten-free even if the blood test comes back negative. From what I gather from the helpful people here, the test aren't always that reliable.

Best of luck. :)

julie5914 Contributor
julie5914
Posted

Did you get an endoscopy? With symptoms that bad, I would say you need one and soon.

Carriefaith Enthusiast
Carriefaith
Posted

Welcome!

Make sure that you don't go gluten free before an endoscopy/biopsy or you may get false negative results.

Sorry to hear you have been so sick.

Pisces1974 Newbie
Pisces1974
Posted
  • Author

Thanks for the replies.

The last time I had an endo was before my gallbladder surgery in 03. At that time I was told that I had a hiatal hernia, gerd, and gastritis. Thr gi said that after my bloodwork comes back we'll decide on what scopes to schedule. I'm so sick of feeling like this all the time. It's also a challenge for me at work. I'm a police dispatcher on the midnight shift. It's a small department so I work alone and I'm often the only one in the building (aside from the occasional prisoner). That means I can't leave my desk to run to the bathroom without calling a patrol in off the road. That's not always possible, if they're all tied up on calls. As most people here already know, when the urge hits, there's no stopping it. I end up having to grab a portable radio, a pad and pen and run to the bathroom as quickly as possible. It would be so nice to live a normal, healthy, life. I'm not sure I'd know how to deal with it though. lol

I just hope the results will be in soon. I'm guessing they'll be held up until Tue or Wed because of the holiday weekend. I hate waiting!!! :angry:

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

      Basic metabolic panel results - more flags

      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.
    2. KelleyJo
      - KelleyJo commented on Scott Adams's article in Latest Research
      4

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

      When I was diagnosed in 2016, I was told I had probably had it at least 30 years. I also have lactose intolerance and IBS, so I'm not certain which symptoms were which in the early stages. I have osteopenia because of it. I have issues with inflammation. I was only diagnosed with the IGA blood test. But there was such a marked difference when I went very...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

      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...
    4. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron. I wondered how it was possible that I had celiac disease...
    5. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment. The cow's body builds that Casein protein. It doesn't come from wheat. Casein can trigger the same reaction as being exposed to gluten in some people. This is not a dairy allergy (IGE mediated response). It is not lactose intolerance...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,370
    • Most Online (within 30 mins)
      7,748
    Susan Blodgett
    Newest Member
    Susan Blodgett
    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

    • Rejoicephd
      Basic metabolic panel results - more flags

      By Rejoicephd · Posted

      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
      My only proof

      By knitty kitty · Posted

      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/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
×
×
  • 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.