Hi, my name is Sarah and I'm new to the forum. I was diagnosed with cutaneous mastocytosis in early 2008 by a skin biopsy, I was almost 31 yrs old. I had two reddish spots on my chest (breast) that just appeared and never went away. I went to the derm just to make sure it wasn't anything serious. Both spots were biopsied and the pathology report indicated that there were diffuse mast cells with a diagnosis of mastocytosis. Prior to the diagnosis, I had two weird episodes, but nothing that was life threatening so I didn't think anything of it. The first episode was at work where I felt dizzy and started having gas like pains all throughout my abdomen. It was the worse "gas" I had ever had. A week later, I was at home with my husband and started having the same type of pain, after having a bout of diarrhea. The pain was so bad I was shaking all over and it wouldn't go away. It took about 2-3 hours for the pain to subside. I remember taking every type of antacid we had, Gas X, Milk of Magnesia, nothing helped. I felt bad for a day or so afterwards but I wasn't really "sick", I couldn't figure out what was wrong.

Prior to the skin biopsy I had been dealing with what I thought was irritable bowel syndrome (my mom has similar issues), frequent headaches, allergies and sinus issues, heart palpitations. I was told to stop taking aspirin, which I took quite frequently because of the headaches, backaches, leg aches and cramping during my menstrual cycle. Stopping the aspirin made a HUGE difference for me. I don't get the headaches as often and the backaches and leg aches do not happen near as often. I used to have bouts of terrible cramping and diarrhea but since I've stopped the aspirin and NSAIDs it doesn't happen as much. It still happens every month when it's time for my cycle but it doesn't seem to happen as often now when I go out to eat and things like that.

My doc ordered a full spectrum of tests after my initial diagnosis: BMB (negative), CT of abdomen (negative), typtase (normal), CBC w/differential (all levels normal), EKG (abnormal then subsequent was normal), heart ultrasound (normal except for a small heart murmur they found). I've gone for about 3 years without taking any meds and haven't had any issues. I get checked by a derm and hematologist 1x a year. I've been good for the last couple of years but recently I seem to be experiencing a few more symptoms and I've developed about 11 new spots on my upper thighs and hip area and a couple on my back. I think a couple of tiny small spots on my lower stomach are also related to the masto. I was hoping I wouldn't ever get any new spots, the cosmetic aspect of this really freaks me out. When my spots appear, they do not ever go away. My spots will get red and inflamed when I take a hot bath and they only itch every now and then. They will flare up when you stroke them.

I finally saw an allergist about a month ago to see if I can slow down the appearance of new spots and to see if I can control some of my new symptoms: eyes constantly watering, left nostril constantly runs, slightly more frequent sinus infections and bloated w/gas, acid indigestion (not heartburn) and frequent constipation. I also get heart palpitations.

The allergist is familiar with mast cell disorders but I wouldn't say he's an expert. He ordered RAST testing because I thought I was always allergic and that was the cause of my sinus issues. Everything he tested me for came back negative (ragweed, pollen, mold, dog hair, grass, etc.). He said he wasn't surprised because it's not IgE allergic responses causing my issues, he said it's the mast cell disease. He put me on singulair mg 1x a day and periactin 1-3x day initially. I couldn't continue on the periactin because it made me EXTREMELY sleepy and I gained 7 lbs in 2 weeks while taking it. I traded the periactin for allegra 180mg 1x a day. He also prescribed me an Epi-Pen just as a safety precaution. My sinus symptoms have definitely improved and the watery eyes are no longer a problem.

However, I've noticed when I try to layout in the sun or when I go to the gym and exercise on the elliptical, I get VERY tired either later that day or the next day. When I layout in the sun, I also itch terribly for about a week or so after. I know that sun is a trigger and the doc told me to stay out of it. I just hate looking like a ghost. Recently the gas, bloating and indigestion seems to be a little more. I can't really identify what is causing it because I think I must be more of a "leaker" and not a "shocker" since I don't think I've ever had a true anaphylactic episode. I do not seem to react immediately to any of the typical triggers, it's like I have a delayed response and my response doesn't seem to be near as severe as others on the site.

I've done a lot of research in the last year because sometimes I just plain don't feel good, but for no apparent reason. Prior to starting the meds I was worried because I had trouble remembering words or when I would say things I would get the words mixed up (and I'm generally a smart person). Some of the things I've read seem to make sense to me that what I'm experiencing could be masto related, but it's just so weird because my symptoms just seem so much milder than everyone else's. Is this a sign that my symptoms are going to progress as I get older? Is it possible that I won't get any worse than I am right now? How can I really narrow down my triggers when I have such a delayed response?

And lastly, I just recently started having issues with my left shoulder. It's aching and sore. The chiro thinks it is bursitis but other than carrying my laptop bag and my purse on my shoulder (daily), I haven't done anything to injure it. It's been hurting me for about three weeks now. Could this be related to masto or is it just a separate issue I'm experiencing, even though I'm only 34 and shouldn't have issues with my shoulders.

This forum is great, thank you to everyone that has decided to share their stories!

Sincerely,
Sarah
Jacksonville, FL

Hi Sarah!
You dont live far from me--Im near Gainesville in the woods
You have a diagnosis so that much is done, what I dont see is which meds you are on?? That "I just dont feel good" feeling is something you could possibly eliminate totally on the right antihistamines. Its better not to let your mast cells have freedom to react badly (like teenagers, Lisa would say!).  Some of us do have chronic bursitis type of pain in joints--including our shoulders. You might also want to carefully feel under your armpit for swollen lymph nodes--we seem to have problems with lypmph glands in our body and I had a really bad swollen node under my right arm which hurt terribly for about 3 weeks.. then as suddenly as it appeared it disappeared and Im fine

Again, we are thrilled you are here. Ask any questions you like and know we do care
Hugs
Ramona

Hi Sarah,

Welcome to the forum!

There's no way to know for sure whether or not you will "progress," but your systemic tests were negative, which makes progression very unlikely.

If you notice repeatedly that you get symptoms after exercise and sun exposure, then those are probably triggers.  We use a "bucket" analogy to think about histamine.  If we get too much histamine from outside sources (foods), or if we produce too much, or if we have too much exposure to mast cell "triggers," or if the mast cells are leaking too much most of the time, then the bucket overflows and we have symptoms that appear "allergic," although technically they're not, as your allergist told you.

If your symptoms are being caused by too much histamine, there are several things you can try and then see if they help you feel better.  (Of course, first run these by your doctor to make sure nothing is contraindicated.)  I have done these, and a lot of problems got better.  If you can heal your digestive system, some or a lot of the other symptoms may resolve.  And, talk with your doctor about increasing the Allegra to twice/day if you're still having symptoms.

--Try going strictly on a low histamine diet (Google ICUS low histamine diet).  When histamine in food is ingested, it acts the same as histamine our bodies make and can exacerbate symptoms.

--You've had a lot of antibiotics.  If you don't already, add a probiotic daily.  Some recommended ones include: Align, Florasource, VSL#3.  (Check to see if they need to be refrigerated.)

--If you're not already taking one, try an H2 histamine blocker, such as Zantac  or Pepcid (Most people take 150 mg. Zantac, twice a day or Pepcid, 20 mg. twice a day)

--Try a supplement called L-glutamine (500 mg., 1/2 - 1 hr. before meals), a supplement that helps normalize the mucosal tissue in the GI tract.

With all medicines and supplements, first try a small amount with other people present, just to make sure you won't have a reaction.  And, BTW, keep liquid or "fast-melts" Benadryl around in case you have a big reaction sometime.  Do carry your epi-pens with you in the unlikely event of anaphylaxis.

If you don't get relief from these things, you might want to be checked for a condition called "mastocytic enterocolitis," which is an overgrowth of mast cells in the GI system.  They are finding that some people with IBS actually have this problem.  

There are specific medicines given to treat it, and it is often reversible in 2-3 months.  Probiotics, H2 antihistamines, and Gastrocrom (the oral version of Nasalcrom) are prescribed.  You might want to check with a GI doctor about having an endoscopy and colonoscopy to look for mast cells in your GI tract if you continue to have discomfort.  They can also check to see if you have H Pylori, a bacteria that can cause stomach problems, including ulcers.

Let us know how you're doing!

I see Dr Lottenderg at Shands of UF. You might wanna try that zantac twice a day and most of us are on 300 mg at a time. That would head off tummy trouble.
hugs
Ramona