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Symptom Cocktail, No Answers


JDB2014

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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!


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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

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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
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      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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