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Greetings all!
It has been quite awhile since I last posted, but alas I am in the midst of another flare up of symptoms (D, bloating, abdominal pain,...) and am hoping to get some thoughts/guidance from the veterans in this group.
To recount, I first posted when I was diagnosed with mastocytic enterocolitis last year. Mary Beth, Tex and others were very helpful offering their thoughts and suggestions as I dealt with this little understood diagnosis. Since that time, I have remained on H1 and H2 antihistamines with repeated episodes of needing Entocort when symptoms got out of control. I also take Nexium and Align. Overall I have had significant relief from when I first went to the GI doc, but I have never been completely symptom free for more than a few weeks.
For the past few weeks I have started having another flare up of moderate to extreme (wakes me up at night) "right upper quadrant pain". I have complained about this pain since I first started having the severe GI symptoms which will be two years in September. First, I was told the pain was caused by a suspected kidney stone; the urologist said it definitely was not a stone. The next flare up of the pain (like all my symptoms it comes and goes) I was told it was stemming from a costal cartilage inflammation. Now, it seems to be back with a vengeance. The GI doc is going to look further since I'm so uncomfortable. He's wants me to have CT enterography (again) to see if anything shows up this time. (Colonoscopy and endoscopy were done just about a year ago.)
The other issue I'm dealing with is anemia that has been mild and is now getting a little worse. The GI doc is checking for a GI bleed (stool test). He's also repeated the CBC. (I asked him to also test my tryptase level again.) I can't help but think that somehow this weird constellation of symptoms (GI and non GI) are all related. How anemia fits in, (other than a bleed) I'm not sure, but I would be interested in others' thoughts. I know anemia can be an issue with systemic masto, but the allergist I see at Hopkins doesn't think I fit that profile. (I'm suspicious about mast cell activation syndrome, which he doesn't seem to know alot about.)
If it helps here are my CBC values that were flagged as low: RBC - 3.69; Hemoglobin -10.6; Hematocrit - 32.5;
Iron - 29; Iron % Saturation -7 and Ferritin - 5. Flagged as high was RDW - 16.3 and UIBC-372.
My primary question is this: Are there other tests I should be discussing with the GI doc to try and "connect the dots" with all that is going on? Am I missing something here?
I'm interested in your thoughts and suggestions.
Many thanks in advance,
Julie
"Sick and tired of being sick and tired."
Mastocytic Enterocolitis...again
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Julie,
I would say another tryptase test would be in order, but often these are normal unless they are caught at the right time. The only way to diagnose systemic masto is a bone marrow biopsy, which probably wouldn't be indicated if no labs are elevated. Anemia is a symptom of mast cell disorders but be a symptom of many disorders. Do you have other symptoms of mast cell disorders? I am guessing you do but may not have connected the dots to mast cells.
What type of diet are you following? I am currently experienceing a nice respite from mast cell symptoms (I do get anaphylaxis) and pray daily it stays that way. Diet is a big trigger me, as well as PMS (catamenial anapylaxis). My last flare started at Christmas and lasted until March and was triggered by testing my tolerance of reactive foods (tapioca and cayenne pepper in particular). I can't say enough about Mediator Release Testing and Enterolab - both helped me to identify my triggers and get things under control. I do not take any antihistamines on a regular basis, but when I am in a flare I take Claritin. I also carry an Epi Pen everywhere I go - only had 1 blast of epinephrine after my flu vaccine and I NEVER want another one, so I have alot of incentive to follow my diet.
You might consider consulting with Norton Greenberger at Brigham and Women's in Boston. He is a GI and is a mast cell specialist. I sent him a letter and he reviewed my records and called . . . .free of charge! Now that doesn't happen every day!!!
Mary Beth
I would say another tryptase test would be in order, but often these are normal unless they are caught at the right time. The only way to diagnose systemic masto is a bone marrow biopsy, which probably wouldn't be indicated if no labs are elevated. Anemia is a symptom of mast cell disorders but be a symptom of many disorders. Do you have other symptoms of mast cell disorders? I am guessing you do but may not have connected the dots to mast cells.
What type of diet are you following? I am currently experienceing a nice respite from mast cell symptoms (I do get anaphylaxis) and pray daily it stays that way. Diet is a big trigger me, as well as PMS (catamenial anapylaxis). My last flare started at Christmas and lasted until March and was triggered by testing my tolerance of reactive foods (tapioca and cayenne pepper in particular). I can't say enough about Mediator Release Testing and Enterolab - both helped me to identify my triggers and get things under control. I do not take any antihistamines on a regular basis, but when I am in a flare I take Claritin. I also carry an Epi Pen everywhere I go - only had 1 blast of epinephrine after my flu vaccine and I NEVER want another one, so I have alot of incentive to follow my diet.
You might consider consulting with Norton Greenberger at Brigham and Women's in Boston. He is a GI and is a mast cell specialist. I sent him a letter and he reviewed my records and called . . . .free of charge! Now that doesn't happen every day!!!
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Julie,
I can't help you much with the mastocytic enterocolitis issues, but I can offer some insight into your blood test abnormalities.
All the low values that you listed, indicate iron deficiency, and so does the high UIBC. The high RDW, (combined with a normal MCV value), suggests that the cause of your anemia may simply be a deficient level of vitamin B-12, and/or inadequate folic acid, (IOW, you have to have an adequate supply of folic acid, in order to be able to absorb B-12.)
Many of us run short of B-12, when we're reacting, because we're unable to properly absorb it. If your doctor doesn't find occult blood, that will substantiate the B-12/folate problem.
Tex
I can't help you much with the mastocytic enterocolitis issues, but I can offer some insight into your blood test abnormalities.
All the low values that you listed, indicate iron deficiency, and so does the high UIBC. The high RDW, (combined with a normal MCV value), suggests that the cause of your anemia may simply be a deficient level of vitamin B-12, and/or inadequate folic acid, (IOW, you have to have an adequate supply of folic acid, in order to be able to absorb B-12.)
Many of us run short of B-12, when we're reacting, because we're unable to properly absorb it. If your doctor doesn't find occult blood, that will substantiate the B-12/folate problem.
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.