Bill: This is not necessarily an auto-immune disease. It can be attributed to it BUT it also can happen from abdominal trauma, peritonitis, sepsis, etc., multiple abdominal surgeries, etc. There are different stages with it. We have a great group with ages ranging from 17 months old to 70 years old and approx 85 in our group – with many being in their 20-40’s. My daughter was 14. Have they done a biopsy yet? Diagnosed with scans? CT? Biopsy? please feel free to PM me.

Lisa

I am new to this site I was recently diagnosed with messenteric paniculitis
I have abdominal pain at nite maybe I am too busy to notice during day but it wakes me up I am told mine is mild I am short wasted and it usually is my entire abdomen that hurts sometimes radiating outward and sometimes brought on when I turn on my side sometimes it is just the lower abdomen Does anyone experience this Is there a special diet? Thanks

Hello everyone.
Just wondering if anyone knows of an experienced Gastroenterologist at Mayo Phoenix or one in the Las Vegas, Nevada or Salt Lake, Utah area.

Also, has anyone been given Naproxen long term? I was given this with Hydrocodone after ER visit and the combination helped the pain. After about 3 or 4 days it was gone (knocking on wood). I still feel like my right kidney is a little sore.

Hi Lisa, I had a Gastro tell me the other day that it was caused because my type 2 diabetes was borderline out of control, A1C of 7. Ever hear this from anyone? I’m not sure if I believe it.
Von

I am Sue from KnoxvilleTN. I was just diagnosed 3 days ago To see GI mid. April. I have read what I can find about mesentery panniculitis.would love a support group if you can give me contact info

S Jackson I also newly diagnosed. Same pain. I would also like any info. Diet changes? Does it usually go away?

Would love to join your group

Please send me info On your group I was just diagnosed

Would love to be in the group but I don’t do facebook or other social
media’s. Thanks.

Hi This is Von in Las Vegas. I would love to join your support group. Not sure about the navigation, but I will give it a try.
Von

I private messaged you 🙂

Although I am a private person, my goal in this post is to tell everyone that I have controlled my symptoms for 2.5 years without any drugs. On a CT scan 5 years ago the radiologist saw inflammation of lymph nodes and wasn’t sure what it was but suspected mesenteric panniculitis. I was not symptomatic. In August of 2012, I came down with severe pain and bloating, and for two months I could not sleep on my side, couldn’t run, barely walked, etc… all with severe pain. I started reading online, and all I saw were these terrible stories and the dangerous drugs people had to take. I had a clue that my disease was autoimmune related, because I had an autoimmune disease that caused fluid to gather in my inner ear.

Let first state, I am a totally Western medicine kind of person, and have nothing to gain from sharing my experience. The only thing I hope is that one person can gain freedom from pain like I have.

My research led me to the Paleo, auto immune protocol diet. It is a tough diet, and I lost a lot weight at first (too much). The good news is the diet lets you add things so that you can figure what your triggers are. I was very strict for the first 4 to 6 weeks. I now cheat all the time, but go back on a less strenuous version of it when I begin to feel minor symptoms. The great news is that my blood tests are amazing (I had high triglycerides, low good cholesterol, etc.) I am no expert, not a doctor, but just someone who has felt guilty by not sharing what has helped me.

I wish you all no pain, and a full recovery. take care, Doron