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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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    • Would a coeliac screen be the same as a test for antibodies, then? I have no idea why it was even included in my list of tests. It could be my brother, or my symptoms, or both - regardless, I can't say I know too much about the testing.  It's possible that my brother has coeliac disease, I really do worry about it sometimes. He was told to follow a strict low-FODMAP diet by his doctor, and eventually my parents stopped caring. Occasionally they will remind him not to eat things like pasta, greasy foods, etc. because of his condition, but by and large they don't care. He basically just eats whatever he wants. I'm not sure if it affects him or not. However, he isn't shorter than other family members - my dad is 183cm, and my brother is 178cm at the age of 14. Our mother is 173cm.  I do think I have bad digestion, yes. I get gassy and very bloated often, as well as constipated phases (and then following that, diarrhea phases.)  I have tried to ask my mum to call the doctor to get the tests done, but I'm hesitant to mention anything to do with gluten as I know they won't believe me, solely because a good friend of mine has celiac disease. I know they'll think I'm doing it for attention, or to be trendy, when in actual fact I'm just tired of being sick and having no explanation for it other than diet. I'm positive it's not dairy, as I was vegan for a couple of months at one stage. When I went back to eating animal products, I had no issues whatsoever. 
    • He had the IgG ELISA done as well as other blood panels, fecal and saliva tests. He is on an elimination diet right now where foods that score above 0.2 are eliminated for 2-6 months depending on the score, then added back slowly after the detox period.  I am aware that there is a lot of controversy over the IgG, and I'm not here to go into that issue, but I can say with certainty that eliminating the additional foods he reacted to has seen a huge reduction in the symptoms that persisted after cutting gluten and dairy. We will be attempting to add rice back in around October, and see how he does but until then I still need a solution for a baking mix.  I tried to wing it a bit with pumpkin bread today and my attempt was okay but not great. The loaf sank a bit and was overly chewy.  So, to my original question....recipes?
    • Ask the doctor's office!  But usually you can eat right after if you feel like it.  But ask them!  Some of them will try to give you crackers, so you may want to bring some gluten-free applesauce or Rice Chex
    • I'm wondering if he doesn't have an oat problem. He was only dx'd several months ago and really shouldn't use oats for a year after dx. Just thinking out loud. I too am wondering how the rice was picked out of all those other flours to be determined to be affecting him.
    • How were the allergies diagnosed? I only ask because it's highly usually to be allergic to it. 
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