Need Your Opinion-Please!

[k2626]

For 6 yrs Ive suffered from acid reflux which was labeled as gerd at the time. Shortly after I started getting muscle twitches all throughout body non stop, and stabbing stinging pains in my small joints that would migrate around.

Four yrs ago I was dx with pancreatitis as I had upper left stabbing pain. I am now labeled as chronic pancreatitis but in a mild form as I get these odd upper left quick stabbing pains still. The drs have dx me with this based on mild elevated lipase and my pain location, though all 7 scans Ive had over the yrs show no inflammation to my pancreas (which in early stages sometimes is not seen though usually some changes are seen). 6 of these scans have been EUS-the best at viewing the pancreas.

My "pancreatitis" apparently isnt typical pain. Ill get mabye a couple months with out pain, then a flare for a couple wks where the stabbing pain may be once per day or every other hr. Feels like a brief charlie horse about 1.5 inches under my breast. It doesnt bore straight into my back though sometimes I do get stab pains in my back soley.

This past flare has been the longest since it started- 2 months. This time Ive had loose bowels with it, though gettng better. I have had signs of malabsorption in the past.

I went for another opinion at UCSF-the dr said my pancresa looked great and its not that (though again I know panc is a tricky disease). He biospied me for celiac. Ive had labs however in the past, including from an outside opinion (cost $800) and it was negative.

Im hoping it is celiac as its better than CP which I cant control and I could die of yrs down the road. I kinda doubt its celiac however-do any of my symptoms sound like it? I dont get belly "aches".

Thanks

[Adalaide]

I think all you can do is wait. The type of pain your describing is the same sort of thing I've seen others describe so it wouldn't surprise me, although it also isn't something I'm familiar with. There are people who have absolutely no symptoms at all, which imo is extremely scary. There are some things that are "classic" symptoms but there isn't a right and wrong answer and you don't have to fit any sort of symptom profile to come up positive.

You're right that we are lucky to have something so very easily manage. If you're hoping for it, then I'll cross my fingers for you. It isn't easy to begin the gluten free diet, and although you say you're ready you may find yourself in an emotional mire. Start reading up lots now, especially the newbie thread and just be prepared and know that it may be a bumpy road at first. Also know that someone will always be here to help you with those bumps.

Best of luck and let us know how it goes with the results. Most if not all of us know that not knowing can be absolutely the worst.

[Opa3]

For 6 yrs Ive suffered from acid reflux which was labeled as gerd at the time. Shortly after I started getting muscle twitches all throughout body non stop, and stabbing stinging pains in my small joints that would migrate around.

I was dx with acid/GERD in 2007. I've been a Celiac patient since 1983 and never suffered from CP or muscle twitching/ joint pain.I do suffer from stomach pain.

Sorry, I thought you should know.

[GottaSki]

Just my opinion - inflammation can cause all of your symptoms - I've never had gerd/acid reflux but my celiac son has battled this for 10 years - I do however get a similar stabbing pain that you describe and have battled serious muscular and joint pain for decades.

I had to remove many high lectin and histamine producing foods in addition to gluten. We are drinking nettle tea daily which seems to help my symptoms as well as my son's sinus and reflux symptoms.