Need feedback on digestive issues and tx for osteoporosis anyone?

[lynnie22]

I haven't been around in months.  So many things started piling up, and dysautonomia went to the back burner.  I'm sorry to have disappeared on all of you.  Things have gotten serious so I hope some of you out there can relate to my problems and maybe suggest some roads to take or not to take.  My digestion:  Went from bad to worse.  I now have the runs almost every day, sometimes a day in between.  They are calling it IBS, although my internist thought it could be POTS related, although he said there's still nothing to do.  Is there anything to do about this crippling state?  I can't seem to find anything I can eat that doesn't cause pain.  My other issue which most of you because of your age have probably not faced as yet: osteoporosis.  I didn't take any of the drugs because I am SO drug sensitive but over the past year, I lost 10% bone mass and am at great risk of a fracture. They want to give me prolia.  It is a serious drug that works though the immune system, lowering immune system functioning.  The other choice is forteo, a synthetic parathyroid hormone with shots daily but I have a history of hyperparathyroidism, not a good combo.  Anyway,If anyone can give feedback on either of these two conditions, experiences, choices, I would be greatly appreciative!

I hope in my long absence that many of you have gotten better and found answers.

[Katybug]

Hi Lynnie,

Autonomic dysfunction can directly affect GI function. But, there are other things you can try. For exam0le, I have MCAS. When we did food allergy testing, I tested allergic to everything except fish, chicken, and beef. Since that wouldn't have been much of a diet, my immunologist had me stop all grains including rice and corn and all nuts. It made a huge difference in my diarrhea and abdominal pain. Then he had me add 1 item back at a time. Well, color me surprised to find out I'm just fine with gluten but rice makes me start with abdominal cramping and diarrhea with a couple hours. I was able to add all other grains and nuts back in without a problem. I also have carefully tested fruits and there are some fruits (bananas, grapes, avocado) that I can't tolerate for the same reasons. The lesson I learned is that food allergies don't always present as swollen itchy throat and hives. And, they aren't always the usual suspects. I lived from 2007 until last year having diarrhea at least 7x a day often with disabling pain associated with it. Since discovering the rice allergy, I rarely have an issue. Also, I thought some things, like spicy foods (Mexican, Indian) were causing me problems, but no. I always ate those foods with rice. I can eat them with no I'll effects now because I don't eat the rice.

I'm not saying it is for sure a food issue, but, it is one area that you can test yourself and then control by avoiding trigger foods. It's nice to be able to control one of my major issues without a pill. I don't miss the rice because I don't miss the pain. ☺

In the meantime, before we figured out the allergy issue, my GI doc gave me a script for Donnatal to use as needed. Because it is addictive, I only used it on days when I was ending up on the floor of my bathroom in the fetal position. One dose did give me relief from the pain for at least 24 hours even though it is theoretically a much shorter acting medication. 

I hope this improves quickly because of all the terrible symptoms,  this was the one I hated the most and was the most limiting for me. It's hard to do anything when you know you can't be more than 20 ft from a bathroom. 

Take care,

Katie 

[lynnie22]

Hi Katie!

Nice hearing from you.  I didn't realize you were so disabled with your digestion.  There is a doctor who does food allergy testing I've been trying to get to for months.  In NYC, it costs an arm and a leg because it isn't covered by insurance.  So I've been trying to get there.  In my system it works like this and it keeps getting worse: for months I was constipated and then the last several months, one day nothing, the next day, the runs several times, every other day.  I eliminated milk and that helped for a while but not for long.  Thanks for that advise.  And a do have a prescription from my internist for librex for cramping when needed.  I keep thinking its the POTS.  Anyway, thanks.  That reinforces my need to go to NJ.  

Take care,

Lynn