Hi everyone,

My name is Jane and I have had an insane increase in symptoms in the last week (brand new to this). I am really frightened because EVERYTHING I try eating as of late (except bananas so far) sets me into a crazy tailspin. Flushing, sweating, mucus drainage, dizziness, disorientation, exhaustion. This morning I had 5 bites of oatmeal -completely plain- and dealt with the above symptoms for a greater part of the day. When feeling better, I had one bite of lentils and again, feeling like I'm gonna faint. What is happening to me?!! I know you all can help me sort this out.

I haven't even gotten the formal diagnosis of masto yet. But I am convinced this is what I'm dealing with. Two high tryptase tests and waiting to do biopsy. Allergist has me on 10mg zyrtec 2X/dy and 150mg zantac 2X/day. But she is "reluctant" to talk about the eating issues without having the formal test results. AH!!! What can I eat? What should I do when the symptoms come on?! I have an epipen but am not sure if I should use it - heck I'd have to get one every day at this point.

So sad... I have two young (almost 4 and 1), beloved children and am a stay-at-home mom. I need someone with me at all times because I'm afraid for my life.
Thanks everyone....jane

Hi Jane!!
I just wanted to welcome you to the board and echo what Nancy said., She is brilliant, one of my fav people and helped me so very much when I first became ill. Jane, you have it in your own hands to turn this around and stop the reacting.

The great thing is, most of the meds we take are available over the counter and you can pretty safely try a few things to help you deal with the symptoms and feel better. I would suggest picking up Allegra and Benadryl, maybe Chlortrimeton too. I would try new things in the morning only and let someone around you know you are doing that. Never try more than one new med per day and its usually best to wait a few days between trying new things.

I would try Allegra once a day and see if it makes you feel better. (In the AM). I would take Chlortrimeton at night and I would take Benadryl in between, whenever you feel bad.  Please talk to your DR about this.

I take my AM meds and wait for them to kick in before I try to eat==just the act of eating can make us react IF we are close to it , so let your meds kick in BEFORE you eat and it will go better.

Stay in cool AC, dont get very active for now, eat light and rest often ok??? We are here for you Have a good night Hon and let us know if we can help!
Hugs
Ramona

Thanks so much to you all!! Bless you! Bless you!! I am increasing my meds for sure. I am really considering seeing a specialist - flying wherever is needed, paying whatever is needed! I live in the san francisco area. I tried to follow-up with my allergist yesterday but she wasn't in and is not yet responsive. She previously said that if it is SM, the treatment is "like what we do for leukemia" which isn't necessarily the case from what I've read. I'll stick with your expert advice - I'm printing it out so to follow it closely!! Lord knows I have no memory right now.

I'll get some white rice (here's hoping it will be ok) and stick with the bananas for now. So.... is it normally the case that you can stablize the histamine response and then, under expert care, start adding things back in to your diet?

Up until the symptoms exploded, I was nursing the little guy. He broke out in a massive case of hives. OMG. It was scary and I have stopped nursing. Hope I didn't screw up his system, too.

I read your story, DeborahW, a couple of days ago. I was so inspired! I know I can deal with this. I went from thinking I was going to die for sure from this to having a lot of hope.

Hi Jane,

  All great advice about increasing meds from people who have been where you are now.  Your story is very similar to mine, too.

  Here's my 2 cents worth of advice on a few subjects!  First of all, if you're considering resuming nursing, do ask your doctor about the meds passing to your baby.

  I saw that you're having nasal drainage after eating, and there's a nasal spray called Atrovent (Ipratroprium) that might prevent the drainage from happening.  You'll want to ask your allergist about it and to tell him about that symptom being related to eating almost any food.

  Yes, there's a pattern of digestive problems, reacting to many things, etc., when this first comes on.  With the right medicines, you should be able to get yourself stabilized and have a relatively normal life, be able to take care of your kids, eat many more foods, etc.

  Getting an accurate diagnosis is important.  You have a hematologist in your area who is very familiar with mast cell disorders.  He was recommended to me by Dr. Akin in Boston.  It's Dr. Jason Gotlib at Stanford Cancer Center.  (Don't let the cancer word throw you.  Most hematologists are associated with cancer centers, because that is a large part of their practices.)  

  I don't know if Stanford Hematology requires a referral, but you can ask your doctor to refer you to Dr. Gotlib for your BMB.  Dr. Stephen Coutre' is also a hematologist there, and he actually did my BMB completely painlessly!  It was amazing and much appreciated.  Your doctor can call and help you make an appointment.  Before you do the BMB, check out the medication protocols on this forum to be used before procedures. This will keep you from reacting during the BMB.  That includes pre-treating with prednisone, antihistamines, and something to help you keep calm.

  It's important to have the test done at a center that is equipped to check for gene mutations and do complete testing on the marrow to tell you exactly what's going on.  It's so important to go to an expert for this, so you don't have to have the BMB re-done later.  If they tell you they need a referral, ask them if they can find you the name of an allergist who is knowledgeable about mastocytosis.

  There's no way to know without a BMB whether or not you have SM or another type of mast cell disorder.  You could have a mast cell activation disorder and not SM, even with elevated tryptase.  SM is a rare disease, and only about 5% of SM cases turn out to be aggressive, so your allergist is incorrect for the vast majority of patients.  Only aggressive cases are treated with chemotherapy drugs.

   If you can become more stable on increased antihistamines, you might want to try gastrocrom or ketotifen to stabilize your mast cells even more.  There are also some supplements, such as probiotics and L-glutamine that will help your digestive system to heal so that you can tolerate more foods, and some anti-inflammatory supplements you can take later.  For right now, it's best to follow the advice people here have give.  You don't want to risk overloading your system with new things at this point.

  BTW, the memory problem should improve with the antihistamines, too.

  As for toothpaste, you can try Tom's toothpaste.  It has fewer additives than normal ones.  If you don't want to do that, try a mixture of baking soda and salt.  I'm sure there's a recipe for it on the internet.  If the brushing is triggering you, try using a Q-tip to clean your teeth instead of a brush.

  Has your doctor ruled out carcinoid syndrome and pheochromocytoma yet?  They can be excluded by simple tests, and that should be done before you do a BMB.  They have symptoms that can be confused with mast cell problems.  Once those are ruled out, you can consider using an epipen if things get bad.  In carcinoid patients, epi is dangerous, so that's why you want to rule it out soon.

  Be sure to teach whoever is staying with you how to use an epipen.  Always go to the ER if you have to use one.  It's supposed to be used if you feel like you are going to pass out, if you have breathing difficulty or throat swelling, or if you have too high or too low BP and/or heart rate.

  Hope you can get things under control without that!  Okay, that was 200 cents....  If you have more questions, feel free to write all you need to on the forum.  Everybody cares!

Out of curiosity, Joan, if you don't mind me asking. What is your diagnosis? Just wondering since you said your story is similar to mine.

Also, I definitely reacted to the white rice (a few bites), but with more meds in my body, it wasn't as intense. So now, with the rice, I know I'll have a reaction. Should I try a different food now or stick with the rice and see if it gets better over time?

Jane,
Good Luck with everything. Keep digging for answers.
I was diagnosed w/ SM through colonoscopy/endoscopy and skin hives. It is scary. I am a single mother with a 7 year old and I do worry all the time, which is not good for me either.
Things have gotten better with the medicine.
This site has been a tremendous help!!!
I got lucky and found a great doctor locally..
take care,
jennifer

Hi Jane,

I had similar symptoms and food intolerances when the SM first kicked up.  That doesn't at all mean you have SM.  Many people with mast cell disorders and other problems have similar symptoms.

In addition to what Debbie said, you'll want to be checked to rule out pheochromocytoma.  There are only a few problems that cause flushing, and once those are eliminated, then a mast cell disease might be suspected.  You might want to have those things ruled out before you do a BMB.  Blood and urine tests are a lot less invasive.

Winter squash is often tolerated well.  If you don't feel up to cooking, you can buy a few jars of baby food, such as lamb, squash, sweet potatoes, and see if anything is tolerable.  Do check the label, though, to make sure they don't contain wheat or rice or anything you know triggers you.  Start with a tiny amount, like a teaspoonful.

If this is a mast cell disorder, once you're on the meds for a while, you should have fewer symptoms and be able to eat more variety.

Jane,

how high are your tryptase readings?   Were they taken while you were in a crisis or were they just normal blood tests taken at a lab?  

I don't think you have anything else but a mast cell disorder if your tryptase is high on a baseline testing - baseline means without being in a crisis.  The other things to rule out don't raise tryptase levels above the 20ng/mL reading - only masto and anaphylaxis.  So, this is why I ask.


Lisa