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

Symptom Cocktail, No Answers


JDB2014

Recommended Posts

JDB2014 Newbie

Hello,

This is my first post. I'm not even sure if I have Celiac's but I have been sick and suffering for 2 years and have not found relief and things are getting worse! If anyone has any helpful advice please post as much as you want! I'm at my wits end...

2 years ago I was places on bed rest for a severe case of mono. My internal organs(spleen, kidneys, liver, gallbladder, and colon) swelled up on me and nearly ruptured. I recovered and 4 months later started having severe bouts of vomiting. It started in December, I was new to town and I did not have a primary care physician. After 1 1/2 months of vomiting, I got in to see the Dr. He tested me for Celiac's, did a contrast CT, and several round of blood work, but found nothing. A Dr. that I work with suggested that I cut out gluten, and my symptoms got surprisingly way better. I continued to have vomiting streaks, but only about 1 week/month. I began also to have severe pain in my upper left quadrant right where my spleen protruded when I had Mono. It feels like rocks inside of me grinding and feels like there is a lot of pressure. Also, throughout this whole deal in 2013 I have passed 7 kidney stones. My wife and I have switched to all organic, gluten free(mostly, every other month I might have an organic tortilla to relish a burrito) and primarily only drink water and the occasional hard cider. In November of 2013, the vomiting started back, but more sever than ever an hasn't gone away. My Dr. took my blood and it showed lowered kidney and liver function and he just said he thought it was because of dehydration and that I probably had ulcers. He sent me home with a med cocktail of Zofran 8mg 3 times daily, Carafate 4 times daily, and Prilosec 40mg 2 times daily. I was able to keep down food, but only with the meds. Then I started having undigested bowel movements and when I would run out of medicine I would vomit undigested food from the up to 8 hours earlier. I finally had to demand that I get an upper GI and they found a hiatal hernia and my stomach lining severely depleted. Since November as well I have been having increased joint pain in my back(by my hips with a burning feeling in my left buttcheek), hands, neck and knees. The GI Doc that I'm seeing is awesome and I have several test scheduled but still can't keep down food without meds and my pain in my abdomen and joints is getting worse every day. My weight fluctuates like crazy between 190 all the way up to 225! I'm so burnt out and feel like crap all of the time. My wife is pregnant and I need to be a healthy Daddy. Please help!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Hello Soon-to-be-Daddy!

I can not help you with any medical advice, but I can encourage you to continue to pursue a proper diagnosis. Best of luck!

GFinDC Veteran

Welcome SBD ! :)

 

Gee that sounds like fun, not!  Some of your symptoms sound like gall bladder issues.  Gallbladder problems are somewhat common for celiacs.  You could also be having problems due to low stomach acid.   Stomach acid is needed to digest your food, but doctors have a tendency to prescribe meds that block stomach acid.  They make a lot of money on them.  I suggest you try mastic gum, DGL and garlic for the h.pylori.  Betaine HCL can help restore stomach acid temporarily.  Another thing to add is digestive enzymes and pro-biotics. 

 

Celiac disease damages the lining of the small intestine.  That damage intereferes with the chemical signals to the gall bladder.  Quite a few people have posted about having their gall bladder removed, but still having problems afterwards, until they went gluten-free.  Since you already went gluten-free, it is too late for the celiac disease antibodie testing.  Unless you are willing to do a gluten challenge.

 

Celiac disease antibodie tests

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

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. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    4. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

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

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
×
×
  • 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.