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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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    • You're welcome! Yes, I too, hate waiting for lab results. Ugh!
    • I understand this is not a doctor's office and that I need proper testing done to rule out Celiac disease, however, I am stuck waiting until November to even see a GI doctor. So I need some suggestions soon on which test to go for first and what to do as I wait. Also do note, I am 28 years old.

      Right now, the most suspecting culprits to my symptoms have been Gallbadder, Celiac disease, and IBS. I have also been recently diagnosed with pre-diabetes and I am obese.  My Ultrasound and CT scan have all come up as normal and no signs of gallstones. However, I was in extreme pain as my upper abdomen was examined during the ultra sound. My white blood cell count also seems to be high at 12,000 but all blood work came back normal for liver and everything else.

      Symptoms included are: diarrhea
      yellow-stools (Sometimes foul smelling but always sink)
      light gnawing pain in area a few inches above belly button
      burning in chest
      sometimes pain below upper right rib cage.
      Tenderness all around the upper abdomen, but more so on the right and center.
      burping frequently after meals
      Gassy
      bloating in abdomen The pains used to come and go for the past few years as something very mild, but then the yellow stools happen at least four months ago and at a constant rate. Everyday it is either yellow or orange.  Sometimes the stools are lose and other times they are not. Two months in, I was finally diagnosed with pre-diabetes and have been having a strict low calorie and non fatty diet.

      So far the upper right pain has subsided but the pain above my belly button would continue. The gassy and bloated feeling would come and go as well. I get severe heart burn after almost every meal. But I felt it especially after eating whole wheat sandwiches or whole wheat pasta. I however don't feel it when I eat a Nature Valley granola bar, or pack of peanut butter crackers. I also had a chicken and vegetable stir fry with soy sauce cooked in that also had little effect on me. A bowl of cereal also made the heart burn act up pretty bad. I sometimes feel numb or light headed after various meals. Especially larger ones. In fact, it seems the more I eat, the worse I feel. But the less in the stomach, the more the pain above my belly button starts to act up.

      It is usually in the morning and afternoon I feel the most with gas and bloating. Especially after any large meals from the previous day. Despite the diet and work outs I have had, nothing has changed the stools. However, taking fish oil pills has greatly reduced the pain in my upper abdomen as well as the pain  in the the area above my belly button. My question now is, is there a very likely chance of this being celiac disease? Should I go on a gluten free diet to test since I Have to wait so long? Also, which test should I ask the doctor for first, as it will take a GREAT deal of time to pay off each one. Colonoscopy, HIDA scan, or endoscopy. 

      Again, I understand this isn't a site to get compete medical advice or to know exactly what my illness is, but I am trying to narrow down the possibility or what is most likely. If this has a chance of being celiac disease, I would rather know sooner than later.
    • Thank you very much for all the info Squirmingitch. The doctor told me as we were talking he was going to order some tests with urine so I don't know why he didn't mark that. Maybe he forgot as we were talking? Duly noted about the bladder Cancer to watch out for too. Doctor said it will take about a week to get the lab results back usually from this lab. The wait will seem like forever I'm sure. Yes I will press to have the other tests done too if this one comes back negative.
    • http://www.cureceliacdisease.org/screening/ Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660
    • Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle. Time to receive blood test results back from the doc are entirely dependent on the particular lab they were sent to. Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh? Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.
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