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. Celiac.com Sponsored Post
      0

      Recently launched Daura Non-Alcoholic Named One of the Best in the World by Forbes

    2. Iam
      - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

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

      Yes. I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy. Numerous dental visits and several professionally made bite plates did very little to help with symptoms
    3. trents
      - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    4. Scott Adams
      0

      New Research Reveals Why the Gut May Stay Sensitive Even After a Gluten-Free Diet

    5. bobadigilatis
      - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

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

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm. Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,304
    • Most Online (within 30 mins)
      7,748
    Lynette Eve Lord
    Newest Member
    Lynette Eve Lord
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

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

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Feel like I’m starting over

      By trents · Posted

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By bobadigilatis · Posted

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.