Mesenteric Panniculitis or Sclerosing Mesenteritis

Thank you. This is a great place to share, I don't feel so alone. Already learning from others, ready to make changes and hopefully feel healthier.

Hi there,It seems like you are looking for dietary solutions, and I might add that for some they don't work.  For me diet has been my savior. I have never taken any steroids or any other <br>meds although I have seen a Messenteric specialist.  I do go through <br>periods of pain that are bad and it is only when I cheat.  I think I am <br>fortunate to have an autoimmune version of this.  I have done two things<br> to place my symptoms in remission:1. I am on the Paleo autoimmune protocol2. I take the following gut supplements as recommended by Kris Kresser (here is the link: http://my.chriskresser.com/the-supplement-guide/).  I take the list for digestive disorders and the list for autoimmune.Bullet 2 has changed my life, allowed me to cheat on my diet and basically <br>removed my bloating.  Some people go on FODMAP diet, but the Paleo <br>autoimmune protocol works for me.  I know that many folks don't have an <br>autoimmune version, but I imagine that these supplements and probiotics <br>would help with general health. I used to have Gerd (acid reflux for 11 <br>years, taking 300mg of zantac daily) and now I don't take a single pill.Best of luck to you!take care,Doron

Thanks Doron, and yes I am looking for dietary solutions to my MP. Yes I have auto-immune and diverticulitis. I will certainly look at these suggestions and bring to my local MD. You said you saw a mesenteric specialist - may I ask where he/she was located? I am in SD so Mayo clinic is a possibility. I know Dr. Pardi is at Mayo clinic but to get an appointment takes months. Thus looking for possible solutions to help me now. I thank all for this group as I was very frustrated before. At least now I have suggestions and will work on what works best for me. 🙂 Betty

So my Dr. is in Chicago, but he is on leave for almost a year now.  Once he comes back I will let you know.  I used to diet without the supplements, and still had gerd and felt bloated quite often. Now with diet and supplements I don't feel bloated.  Most of these diets are elimination diets and you can add things back in slowly.  Good luck, Doron

Hi, just got the mesenteric panniculitis diagnose the other day. The Dr. didn't even call me, he had his staff do it. They did say if I had any question to call him. After a little reading here, I'm not sure how to take his aloofness. They also found a small node on my adrenal gland. They want to CT again in 6 months. I'm kind of proactive, I'm not just going wing this. The direction I feel it taking me is concerning. I need to find out what not to eat, in a simple format that I will follow. Here is my first step, talking about it with my peers.

Hi @mcminmark, I was diagnosed with MP last May after a couple of months of wondering what was going on. I was diagnosed via CT Scan. I was then referred by my main physician to the GI Doc. I have yet to meet the actual Doctor. When I go to the GI Clinic I meet with the Nurse Practitioner. She is very knowledgeable and answers all of my questions. At first it kind of annoyed me that I couldn't talk to the Doc, but I have gotten used to, and actually like the Nurse Practitioner. I have been using the FODMAP diet http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ which has helped me a lot. I've said it before, having MP is like playing Russian Roulette with food. I have found that I can no longer eat raw vegetables, nor can I eat anything made with corn. (I miss popcorn the most). As the FODMAP suggests, when you introduce new foods, do it one at a time and wait a couple of days to see what happens. I tried to eat a salad a couple of weeks ago, not a lot of lettuce, but some with raw carrots, and I set off a flare for a couple of days. A small amount of raw carrots hadn't bothered me before, so it must have been the lettuce. I don't eat any kind of beans anymore, either. Anything really high in fiber is a problem. At the beginning of the worst of my MP, I was drinking a lot of banana smoothies made with Kefir. I was told to eat white rice, white bread,etc. I had a lot of chicken broth. It's a slow frustrating process. But you have to be patient. I lost eight pounds at first, which should be a dream come true, but I felt awful. As soon as I started the FODMAP diet, I put the weight back on and felt much better. I didn't take any pain killers or supplements, but that doesn't mean those things won't work for you. Everyone is different. I did take Prednisone for two months.
Next week I go for my third CT Scan for a recheck. If this one is as good or better than the last one, I don't have to have another scan. I will just follow my diet and my instincts. I am hoping for a good report. I'll let everyone know.
I hope some of this was helpful.
Take Care of yourself.

Thanks so much @bertbiz for the reply! A lot of the "do not eat" things on that diet I have already stopped eating... just over many years, just listening to my body say no. But there are many that I eat regularly that I will need to stop, like cheese, mushrooms and avocados.

I think I need to find a knowledgeable endocrinologist in the Portland OR area (OHSU). If anyone recommends one... please let me know. I'll spend the weekend reading all this thread, and whatever else I can get to.

Hello @mcminmark,

We are so glad that you've come to Connect, and to know that you are an advocate for your own health. Thank you@bertbiz, as always, for joining in the conversation with your valuable insight.

I'm tagging @billymac65 @dotb @danrofohio @mardellepoff @billindc @vdouglas @amyd @doron @bakb @vmc123 @jimmymac @angel11 @snoopdog @eddieg @tlw32 @mommasaid @buckeyze @peterhamilton @tardis6167 @hardclose to join in; there's a great group of people here ready to share their experiences.

I also wonder if @winnah @tavi @tllamber @dicknlou @jmbazan @katieslost @lyndamm @kathyzendner @barbararickard have any recommendations for you, as they have discussed visiting/living in the Portland, OR area.

@mcminmark, have you been put on any medications to manage the flare-ups?

@mcminmark - private message sent with name of endocrinologist.

Hi, I am just seeing an email you sent me back in June! I hope I had responded, but if not, I wanted to see how your husband is doing. I have not been on the forum for about 8 months, and just started back since I am going through a flare-up and have decided to really get some answers, possibly up at Mayo. How are things? ~Bll (Silver Spring)