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Greetings all,
Looking for your thoughts on some current concerns. Would welcome your comments...
In addition to ME I have also been dealing with some other health issues, which may or may not be related to mast cell activity. Potential mast cell involvement has yet to be determined as a culprit, so we go forward considering other causes.
Specifically, I was dxed with iron defienciy and anemia about six months ago. The doctors kept "poo-pooing" this concern and told me it was just related to menses. However, when my hair started falling out in clumps late fall, they finally took notice and ordered some blood/fecal tests. The fecal fat test came back abnormal indicating a malabsorption issue. The next step was more tests to determine if the malabsorption issue was caused by pancreatic functioning or by my small intestine.
Today I go back in and get the latest test results. My amylase level was normal but my lipase was elevated a bit. The fecal tests are still pending. Now this one elevated level wouldn't be such a concern but I have been having chronic pain in the upper right quadrant of my abdomen for many months. I have complained and complained and then complained some more about it. When the pain flares it's constant and fairly severe. It can wake me up at night and keep me from getting comfortable when I'm sitting. I've heard every "excuse" from the doctor of what it could be without much seeming interest on their part to address it. When it acts up I also seem to have associated back pain square in the middle of my back and the awful "water works" sound coming from my upper gut. I mean it literally sounds like pipes in a house broke and are running through my tummy.
Because the lipase is up a bit my doctor ordered an MRCP which will look at my pancreas and surrounding area. He tells me the pain I am having could be from my pancreas, but he also doesn't want to rule out other potential causes. I'm suspicous that something is going on with my pancreas because of the location of the pain, the slightly abnormal test result and the fact that for years I have had trouble with my blood sugar. (Going way too low, not high.)
Does any of this (including the hair loss and malabsorption) ring a bell for anyone or trigger any thoughts of what might be going on with me? I've received some wonderful insight in the past from group members so I'm hoping maybe somebody will have a "light bulb" moment with this one too!
Thanks in advance!
Julie
Hair loss, malabsorption, anemia, pancreas...?!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Julie,
Please be aware that it is somewhat common to have pancreas issues along with MC. MC seems to interfere with various types of enzyme production, not only in the pancreas, but in the small intestine, as well. Those issues, (if they exist), will most likely disappear when your MC symptoms are resolved. The hair loss is also probably also due to a malabsorption problem, which tends to cause us to become deficient in the B vitamins.
A pain in the area that you describe, especially one which can be felt radiating into the middle of the back, is usually due to gallbladder disease. I'm surprised that one of your doctors hasn't mentioned it, and suggested testing for it. Typically, the symptoms will appear soon after eating a fatty meal, and will persist for several hours, usually subsiding by the time that 6 or 8 hours have passed. This too, is rather common in conjunction with MC. Actually, the pancreas is much lower than the area you describe. It's located below the stomach, and the stomach, of course, is located below the diaphragm.
The "water works" gurgling noises that you describe are very, very typical of MC. We're all used to hearing those noises. They too will pass when you get your MC symptoms under control.
Tex
Please be aware that it is somewhat common to have pancreas issues along with MC. MC seems to interfere with various types of enzyme production, not only in the pancreas, but in the small intestine, as well. Those issues, (if they exist), will most likely disappear when your MC symptoms are resolved. The hair loss is also probably also due to a malabsorption problem, which tends to cause us to become deficient in the B vitamins.
A pain in the area that you describe, especially one which can be felt radiating into the middle of the back, is usually due to gallbladder disease. I'm surprised that one of your doctors hasn't mentioned it, and suggested testing for it. Typically, the symptoms will appear soon after eating a fatty meal, and will persist for several hours, usually subsiding by the time that 6 or 8 hours have passed. This too, is rather common in conjunction with MC. Actually, the pancreas is much lower than the area you describe. It's located below the stomach, and the stomach, of course, is located below the diaphragm.
The "water works" gurgling noises that you describe are very, very typical of MC. We're all used to hearing those noises. They too will pass when you get your MC symptoms under control.
Yep, we deal with those issues regularly on this board.Julie wrote:Does any of this (including the hair loss and malabsorption) ring a bell for anyone or trigger any thoughts of what might be going on with me?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex and Polly,
Thanks for the responses.
Good thought on the abdominal pain Tex, but my gallbladder was removed years ago. So, I'm not sure where that leaves me with the pain, but hopefully my gastro and I can figure it out. Lately it's been getting persistently worse so I would really like to know what it is, so we can try and effectively address (eliminate!) it.
Re: the hair loss I too am thinking it is the malabsorption issue but my gastro doesn't agree. Of course, his response was go to a dermatologist and let them figure it out. Just what I want to do...make another dr's. appointment. Polly, I'm not on the med you mentioned. I wish it was caused by meds, at least then I could potentially do something about it.
I didn't realize that pancreas issues and MC can go hand in hand. I'm going to read up on that connection and see if I recognize any similarities with my situation. Of course, because I'm also dealing with the underlying mast cell issue, there is also always the question if mast cell activity is somehow to blame. So many questions and so few answers, when all you want is to feel better. I know everyone here can relate to that!
As always, thanks for your thoughts. I'll keep you posted.
Best to all,
Julie
Thanks for the responses.
Good thought on the abdominal pain Tex, but my gallbladder was removed years ago. So, I'm not sure where that leaves me with the pain, but hopefully my gastro and I can figure it out. Lately it's been getting persistently worse so I would really like to know what it is, so we can try and effectively address (eliminate!) it.
Re: the hair loss I too am thinking it is the malabsorption issue but my gastro doesn't agree. Of course, his response was go to a dermatologist and let them figure it out. Just what I want to do...make another dr's. appointment. Polly, I'm not on the med you mentioned. I wish it was caused by meds, at least then I could potentially do something about it.
I didn't realize that pancreas issues and MC can go hand in hand. I'm going to read up on that connection and see if I recognize any similarities with my situation. Of course, because I'm also dealing with the underlying mast cell issue, there is also always the question if mast cell activity is somehow to blame. So many questions and so few answers, when all you want is to feel better. I know everyone here can relate to that!
As always, thanks for your thoughts. I'll keep you posted.
Best to all,
Julie
Well, you know, one of the listed symptoms of mastocytic enterocolitis, (or mastocytic inflammatory bowel disease, (MIBD)), is abdominal pain.
Here's another article by Dr. Lewey, about it:
http://www.ibduk.com/mastocytic-enteroc ... mic-2.html
I have a strong hunch that some day, most of the cases of "IBS", that are not actually LC or CC, will turn out to be ME, (which, of course, is just another form of MC). They are missed most of the time, today, because even if the GI doc bothers to do a colonoscopy, and he or she is thorough enough to take biopsies, the pathologist will almost never stain any slides so that they can be analyzed for ME. GI specialists and pathologists need to be educated about this.
Tex
Here's another article by Dr. Lewey, about it:
http://www.ibduk.com/mastocytic-enteroc ... mic-2.html
I have a strong hunch that some day, most of the cases of "IBS", that are not actually LC or CC, will turn out to be ME, (which, of course, is just another form of MC). They are missed most of the time, today, because even if the GI doc bothers to do a colonoscopy, and he or she is thorough enough to take biopsies, the pathologist will almost never stain any slides so that they can be analyzed for ME. GI specialists and pathologists need to be educated about this.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Julie,
I don't recall whether you've been thoroughly tested for celiac disease, but it could explain the anemia and fat malabsorption. Celiac can also lead to celiac hepatitis, a form of Autoimmune Hepatitis, which can cause upper right quadrant pain and elevated liver enzymes. Blood tests for IAH include ANA and Anti-Smooth Muscle or Anti-Actin Antibody. They are simple blood tests so perhaps your doctor has ordered them or will?
Keep us posted.
Zizzle
I don't recall whether you've been thoroughly tested for celiac disease, but it could explain the anemia and fat malabsorption. Celiac can also lead to celiac hepatitis, a form of Autoimmune Hepatitis, which can cause upper right quadrant pain and elevated liver enzymes. Blood tests for IAH include ANA and Anti-Smooth Muscle or Anti-Actin Antibody. They are simple blood tests so perhaps your doctor has ordered them or will?
Keep us posted.
Zizzle
Yes, it definitely could. Good point!Tiredjen wrote:Could your thyroid be playing havoc with your hormones?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.