Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> new here and scared.... http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1311299963 Message started by jane on 07/21/11 at 14:59:23

Title: new here and scared....
Post by jane on 07/21/11 at 14:59:23

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

Title: Re: new here and scared....
Post by NZNancy on 07/21/11 at 15:25:52

Jane, you could (and need to) take a lot more of your antihistamines. Zyrtec could be increased safely to 30mg a day or more; Zantac 300mg three times a day. I think you may need another allergist. If the present one doesn't think you are urgently in need of careful help, then it is the wrong one for you to be going to.

I suggest you eat bananas only, for several days. Plain white rice is usually OK - if you can eat it, I imagine you would love to have more than bananas. However, don't add more foods until you are stable and have a doctor who is concerned about you.

When you look for a doctor, don't tell them that you think you have mastocytosis or that you want to be checked for mastocytosis. Better to tell your symptoms, your current meds, take copies of past lab work-ups, and let them think of mastocytosis. Then they are much more invested in researching and working with you. If a doctor feels you are just using them as a means to get a specific diagnosis, it can turn off even a good doctor.

You do need help fast. And get that EpiPen (or, really, those EpiPens).

Nancy

Title: Re: new here and scared....
Post by Riverwn on 07/21/11 at 16:13:05

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

Title: Re: new here and scared....
Post by DeborahW, Founder on 07/22/11 at 06:52:54

I would suggest increasing the zantac to 300 mg twice a day (definitely don't eat a meal before taking it). This should help immensely. Should you begin feeling ill during the day, take an extra zyrtec. If needed, my rule of thumb is an extra one in the first half of the day and an extra one the second half of the day if needed due to triggering. I am a true walking case of anaphylaxis and this helps fabulously.

After you have tried the increased zantac for a couple days with no bad effects (you won't have any, don't worry), then I would suggest getting some allegra (180 mg) and taking 1 allegra in the morning with your 300 mg zantac and taking the zyrtec in the evening (by 5 pm) with your 300 mg zantac. Then if you have any triggering in the first half of the day, take an extra med (zyrtec). If you trigger after you have taken your evening med, then take an extra allegra. The point is to take the opposite extra med from what you are normally taking at that time of day. Dr. Akin told me years ago that he found good results with his patients who took 2 different meds (allegra and zyrtec) rather than 2 zyrtec and no allegra. This is what I take, and it reaklly works great for me. If you read my intro story, you will see that I was so sick and debillitated for a long time. Now I am great. Nancy helped point me in the right direction to getting better all those years ago! [smiley=dankk2.gif]

Since you have little ones, I worry that the benedryl will knock you out if you take it all the time and then you won't be able to watch the kids. So, I would try these things first and see how you do. I am highly food triggered, and by keeping a food diary (and avoiding all fiber and gassy foods), I was able to identify my safe foods. For example, for the longest time all I could eat was white minute rice, and only a tiny portion at a time. (The oatmeal and lentils that you ate would have doubled me over in terrible pain on my way to passing out! Youch!)

If you haven't read my tips in the "Read first" section, check them out, as they will help you. I can assure you that although you are scared now, you just need the right information and you will get yourself better and able to enjoy life raising your little guys! Trust me on this....

Private message me or post back if I can help you with additional advice.

Title: Re: new here and scared....
Post by jane on 07/22/11 at 08:14:11

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.

Title: Re: new here and scared....
Post by jane on 07/22/11 at 08:50:18

P.S. How did you brush your teeth during this time?! I am reacting strongly to toothpaste. Urgh.

Title: Re: new here and scared....
Post by Joan on 07/22/11 at 17:11:28

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!

Title: Re: new here and scared....
Post by jane on 07/22/11 at 19:21:24

Thank you so much for your words of wisdom and concern! I am so excited to learn there is someone at Stanford who is knowledgable about mast cell issues. I was all ready to head way out east!

The allergist I'm seeing hasn't ruled out anything yet. She wrote today saying she put in a prescription for prednisone but is not sure what to do because, considering the allergy tests and tryptase levels, "this just doesn't make sense." (I had another tryptase test on Wednesday that came back at 12, lower than the initial 20 and 18. Perhaps because I didn't eat anything before the wednesday test?) Because of the HMO garbage, the allergist "can't" refer me to hemotology until she gets the results from the split tryptase test which aren't due to arrive until the 29th. Supposedly the split test will determine if this is a allergy problem or a mast cell problem. I'm a little scared to wait that long and am not sure how I can get over to Stanford - the HMO most likely won't pay for it. But I'll look into whether I need a referral. If not, I might just have to pay out-of-pocket for now.
Thanks again... so much...jane

Title: Re: new here and scared....
Post by jane on 07/22/11 at 19:54:09

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?

Title: Re: new here and scared....
Post by missybean on 07/24/11 at 05:59:30

Welcome Jane. I certainly relate to you. I have a 4 and 1 year old too. I take 300mg zantac and it helps with the flushing a lot. Talk to your doctor about taking hydroxyzine at night, that helps too. I don't know if you know but there is a Pacific Northwest Support Group for us west coast people and the leaders name is Lisa Sterling. There are many others that live in your area and can forward you to the experts that live near you. I will PM you.
Melissa

Title: Re: new here and scared....
Post by Jenlwel on 07/24/11 at 08:06:55

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

Title: Re: new here and scared....
Post by DeborahW, Founder on 07/24/11 at 09:05:48

Jane,

Do not eat any more rice. If you reacted once, then it needs to be off your list. Maybe some plain chicken broth....

Have you had a bunch of other diagnoses rules out? What about celiac spru and carcinoid syndrome? We often find our mast cell diagnosis by testing negative to everything else.

Title: Re: new here and scared....
Post by Joan on 07/24/11 at 10:37:01

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.

Title: Re: new here and scared....
Post by jane on 07/24/11 at 12:05:59

Thanks everyone. Looks like I still need to get a lot of stuff ruled out. I am thinking to call the specialist at Stanford tomorrow to see if I can set something set up ASAP since I'm not getting anywhere with my own group.

So far, I am reacting to foods (and toothpaste) only, I think. But I guess that could change over time. This is all so debilatating. I am very hungry but have an immediate, overwhelming reaction with everything I eat (1 banana a day still ok for whatever reason - which gives me hope there HAS to be other foods on this planet I can tolerate). I feel so much better when I don't eat. When I do, I think "WHY DID I DO THAT now I feel awful?!"

Title: Re: new here and scared....
Post by Lisa on 07/24/11 at 12:31:38

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

Title: Re: new here and scared....
Post by jane on 07/25/11 at 09:00:10

I have had 3 tryptase tests. The first was 20, the second 18 and the third - last week - was 12. I have not been eating, so I wonder if the third test was lower because of that. The allergist had a "split tryptase test" done which is suppose to indicate whether the reaction is analphylactic or systematic. It takes 3 weeks to process and Friday is the due date.

Title: Re: new here and scared....
Post by jane on 07/25/11 at 17:18:50

So I have a profound renewed confidence in my doctors. I visited today and am being taken very seriously. They have already ruled out, with blood and urine tests, all the differential diagnosis people have mentioned. I guess I was just clueless. It was confirmed that they would send me to a specialist outside the HMO after the split tryptase test comes back. Nonetheless, I went ahead this morning and called the specialist's office, made an appt (for 9/1, his earliest - ouch), and signed permission to have my records sent over. They said if my records indicate I need to be seen sooner, they will definitely do so. I am much more relieved today.

I ate two whole bananas and felt better. Wow, that's a lot of food as of late. But, gosh am I hungry. I am so reluctant to try something else because the reaction is so flipping intense and long-lasting. I think I might give my body a break for at least another day and stick with the monkey food.

For those who are highly food-triggered, how long did it take to be able to eat more foods again? Are we talking weeks or months on average? Just looking for the light...

Thanks folks....jane

Title: Re: new here and scared....
Post by Joan on 07/25/11 at 18:31:45

It shouldn't take very long after you are on the correct amounts of medicine. In the meantime, be sure the bananas are not too ripe, as too ripe fruits and vegetables can contain histamine. Look up the "low histamine diet" at:

www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

It might look harsh at first, but it will make a huge difference in how you feel if you stay on this diet. Once you're feeling well again, you can see if you can tolerate any foods that aren't on the "approved" list. I can now eat some things occasionally and in limited quantities that I couldn't even think of touching at first.

If you don't mind saying, who is the specialist they're sending you to see? Is it a hematologist? Immunologist? or other? We do try to keep a list on this site of doctors in various parts of the country, so if you think he/she is good and able to diagnose you, it might be helpful to others to post the name and contact info under the doctor topic on this forum.

Hope you can get more info soon. It does sound as though your doctor is doing things correctly so far. Lucky girl! So many of us have been through the ringer with doctors.

Title: Re: new here and scared....
Post by TiffanyB on 08/06/11 at 07:46:16

Jane,
Reading that oatmeal, lentils and rice caused you trouble made my jaw drop...we have been on a research binge this week, and found that we think our 3 yr old with MCAD is reacting highly the last several weeks because although we were doing a low histamine diet with success for some time, many of our foods we were eating regularly (melons, pears and more) weren't available in organic forms in our new town and I was doing more berries and other foods...WELL!!!

In our research binge we found a ridiculous amount of research studies...about how the way they make mast cells primed for degranulation (non-IgE, like mast cell issues) is through adding an acid to them. All three of the foods you named are highly acidic...along with a lot of known degranulating foods (shellfish, peanuts, walnuts.... HAS ANYONE HEARD OF THIS BEFORE? I can't find any information on any diet that helps masto other than a low-histamine diet, but Max was doing great for a while...until we added in more beans and rice products.

Today, I'm feeding him a ton of alkaline foods, with low histamine levels, to get him stabilized. I'll report back...he's only 3, and has to eat what I give him, so he works well as a little canary. ;)

Oh, and our little guy can't do most of the medications, because he reacts to every additive, preservative, sweetener and dye...so, we are having to do EVERYTHING nutritionally or with pure supplements...It's making me a little nuts...hopefully at some point the random information in my head with help SOMEONE!!!

We are waiting to hear back from Dr. Castells for an appointment, but my Mom and I are already booked for the conference at the end of October...is anyone else going?

Best,
Tiffany