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Symptom Cocktail, No Answers
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3 posts in this topic

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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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!

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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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