Mesenteric Panniculitis or Sclerosing Mesenteritis

I didn't realise this! I have been tested as well (years ago) and was told that I don't have a gluten problem...

@kimh, you can always follow-up with your doctors if you ever have questions after leaving an appointment.

Yes - I started having stomach cramps for months and they could find nothing. Doctors gave up so I gave up gluten and cramps went away. I think the prevalence of so many GF products shows how many people must find giving up gluten helpful.

Well, to be honest, I have been very lucky with my team of doctors. We are always in contact with one another, so most of my questions (or ideas from this group) are addressed in a timely way, thankfully. In fact, the doctors communicate with one another, so that each knows all of my problems. Also, any tests that I have done are cc'd to the team, which is helpful in keeping everyone in the loop.

It's worth a shot!

Hello PC, thank you for your reply. It is so good to hear from people with similar complaints as I have, and it is also very good to know that I am not alone.
About your food-question: I have always had problems with my intestines. Sometime they act normal, and sometimes they "mess up". And in most cases it is hard to tell if it is a result of something I ate. So also for my MP it is hard to tell if there is certain food that causes problems.
But I have found out some things that seem to work for me, but not in the way that they cure things: don't eat to many in one time (little portions is better) and food with a lot of fat doesn't improve the situation. I'm also trying to lesser my use of sugar.
But I don't quit eating all the things I like, because dealing with MP is hard enough, so there is no need to make your life more uneasy.
But I try to eat less of the "bad" things and more of the healthy things. Although I've always done that in my life.

Hello Kim, Thank you for your reply.
I have had two courses of prednisolon (20mg for two weeks) and that gave a lot of side effects, but it helped to reduce the pain and complaints I had at that time. But the "mass", visible on echo's and CT-scan, were not reduced in any way. And the problems were increasing again very soon afterwards.
I have had the same "heavy" Prednisolon course you had, from September last year, and it did maybe something, but it gave very heavy side effect, so over all it might have done more damage that that it did good.
But I'm using Tamoxifen (10mg, once a day) now for almost three weeks and my complaints are much less now: I have less pain and more energy. But I still have to watch my energy-levels, and stress and other things that take a lot of energy are not doing any good to my situation.

Morning @marcrllk ! Good to hear you are listening to your body. I sure believe we are chemical beings. Everything we come in contact with, ingest and/or breath effects us somehow. I tend to be “sensitive” and try to be aware, what might be a trigger. I have a strong reaction or next-to-no reaction. Same thing with my asthma. But I go from being ok , being ok, to not ok at all and in the middle of a very strong reaction. My allergies are like that too. Crazy body. But I have found with more rest ( not a good sleeper) just down time, watching tv, relaxing and direct attempts to eliminate stress-I’m much better. How about you? Do you find stress if all kinds bites?

Hi @pcfromfm ! The same is true for me regarding rest and keeping stress down to try to battle symptoms. The other thing that is killer on my body is climate! The dampness, wetness and cold do me in every time....and of course, we just keep getting dumped on with snow! I hope it's not an Alberta clipper lol!!!

Warmer weather starting end of the week Kim! Thank goodness! Such a bout of cold, right!? Balmy -18 today here! But above zero by Sat they say! Snow to melt! Yea! Yes I’m affected by cold too. Interesting Doc I had said that might have been onset of issue with mp -when I was 8 I had hypothermia.