New Gi Symptom - Help

[freelemons]

I've had stomach/intestinal pain, accompanied by nausea since Sunday, night and day, with no sign of going away. If I try to eat anything it gets worse, and if I drink ridiculous amounts of water it feels a little bit better until the water makes it through my system. My, er, output is less than it seems like it should be but totally normal when it happens. It seems like my GI tract has just stopped contracting properly. I'm worried that even if this is somehow unrelated to the dysautonomia, the amount of physical distress it is causing, my inability to eat, and the resulting lack of sleep is sending me into a flare (I'm already really tachy).

I took a benadryl last night because it occurred to me it might be MCAS related--at some point I had been on allergy meds and noticed that my dysautonomia symptoms seemed to have calmed down. My doctor mentioned sort of offhand that that might mean some mast cell involvement. I think it helped my stomach a little but obviously hasn't been a miracle cure.

Anyone have any suggestions? Does this sound like it could be MCAS and is there something I could do if it is, short of going back to the doctor, that might help? I'm sort of reaching my wit's end and running out of what energy I had.

Any advice would be very much appreciated.

Thank you!!

[Christy_D]

My son's worst symptoms are GI related, abdominal pain, nausea. He has MCAS and POTS. For a while he also had gastropareisis but the last time he had a gastric emptying test it was fine. So, yes it could be a mast cell issue or it could be the autonomic dysfunction in the GI area.

[E Soskis]

Dysautonomia certainly messes with the GI system. In the past couple of months, I have had increasing difficulty with abdominal swelling and gastroparesis-type symptoms. GI motility is slower and I have a lot of gas and cramping. A couple of weeks ago, it was so bad that I quit eating. I began a liquid diet to allow my stomach and intestines to "rest". After a couple of days, I began to feel better - hungry - but better. I began to add back light foods and now am able to eat almost anything as long as it is only a small amount at a time. I think you just have to experiment and see what works for you - some people respond to a gluten-free diet. I find that foods that are high in sugars and fats increase my symptoms. There are medications that help with bloating, swelling, and gastroparesis - some medications are used off-label and your physician should know which ones may help. Good luck - I feel for you as this is a frustrating part of dysautonomia.

[spinner]

I hope this isnt a dumb response, but have you considered using a juicer/blender more frequently?

I discovered awhile ago that sometimes drinking a meal is easier when eating boring/bland foods. I make a variety of smoothies, but you can literally blend anything together. My favorites are black bean/turnip greens (believe it or not), carrot/pineapple, strawberry/banana. You can mix wheat germ/oats, etc into any of them.

I wonder if it might be more easily and quickly digested? Worth a try? Especially if youre dealing with bland foods--easier to drink down than sit there for a half hour trying to eat.

[jackiemxoxo]

This sounds like the start of possible gastroparesis to me. Have you considered going to a GI and getting a gastric emptying study? When my GI symptoms started it was very painful and almost felt like food was getting stuck near my sternum. Eventually I was just drinking ensure 3 times a day for 2 months until it subsided and eventually just got better. I would get it checked out though cause a GI doctor might be able to give you medication to help or test you with gastric emptying or endoscopy. Feel better!

[freelemons]

Thanks everyone for your responses. I finally went to the ER at my doctor's suggestion on Friday and I have high serum lipase levels, which made them think it was pancreatitis. (They were also really worried about my tachycardia, I tried to explain that was normal for me but I don't think they believed me!) Went to a GI on Monday to follow up and they seemed to think I wasn't at high enough levels to have full-on pancreatitis but couldn't figure out why my numbers were high.

I tend to agree with you that it is a gastric emptying issue, I actually think my GI symptoms were the first sign of my POTS over 10 years ago but no one really knew what was going on. I was diagnosed with delayed gastric emptying and IBS as a teenager, and then got sick with POTS in college and the stomach symptoms calmed down/I got used to them. I mentioned the gastric emptying and that is what the GI is thinking it will end up being again. It's just never been this extreme for me! I'm getting an endoscopy and then may repeat the gastric emptying study I had 10+ years ago.

Has anyone ever had these high lipase levels? That part is still confusing my GI but everything else sure does seem like gastroparesis.

And thank you for the dietary suggestions (and the juicer is a great idea, I have been eyeing that anyway!). I think I was just taken aback by the sudden onset after so much time without this particular group of symptoms. Isn't it odd how it seems to shift just when you think it's getting predictable?