Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> new ... wondering if I have masto http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1343100548 Message started by Sasha on 07/23/12 at 16:29:08

Title: new ... wondering if I have masto
Post by Sasha on 07/23/12 at 16:29:08

My story starts almost 7 ago when my hand swelled up while I was eating a salad (which had sat in my fridge for about a week). A few weeks later my throat started to swell at a restaurant. This same thing happened another month later ... About a year later I started getting tongue tingling, lip tingling, face tingling from multiple things. A few times I would have asthma attacks/wheezing while eating. Sometimes my lips would swell a little bit while eating. I ended up going low salicylate and low histamine which seemed to clear my symptoms. I now feel that I can't add back any med-high histamine foods without having severe reactions ... sometimes I still get reactions even with my strict diet. I have some true allergies: dust, bee, fire ant, (these are my most severe allergies on testing), cockroach and cat ... I also am allergic to penncillan and sulfa drugs (rashes). My dr. checked my tryptase and it came back normal. He also checked my for anti-IgE which came back elevated. I've had 2 pregnancies where during and even after the pregnancies my platelet count got low. This last time it was flagged at the hospital for being a little lower than what they like to see. I also get facial tingling/neck tingling when I've had certain injections (like flu shot). After 10 weeks post partum they were back in the normal range. Does this sound like it could be masto? I end up using benadryl and high intake of vitamin C and B12 to help with symptoms. I seem to react so much ... I can't take vitamin D and even reacted to my multi-vitamin. It is so frustrating and I'm a bit scared to even go to the dentist for fear of what type of reaction I might have. I went from being able to take any med and eat any food to being on a very strict diet and worry about every type of med, etc. I'm probably going to go for a second opinion but wondering what people who have lived with it have to say. I also have lower blood pressure and when I eat mozzeralla cheese (the only cheese I don't have an outright reaction to) I seem to get even lower blood pressure and feel faint everytime I stand up. I also tend to get really much sicker than other people in my family ... severely sick with just mild colds that are going around in the family. So are asthma, tingling of tongue/lip/face/neck, mild swelling, sometime throat constriction symptoms of masto?

Title: Re: new ... wondering if I have masto
Post by DeborahW, Founder on 07/25/12 at 15:42:12

Hi. Your symptoms sounds like mast cell disease or food allergies. If you have had allergy testing for foods, then you already know which foods you are allergic to. If not, you would only want to do blood testing for allergies, not the scratch test because that would be dangerous if you react to those foods that are tested.

I can't write more tonight, but I'll stop back tomorrow with more ideas for you!

Title: Re: new ... wondering if I have masto
Post by Riverwn on 07/31/12 at 05:59:36

Hi Sasha and welcome!
Im sorry youre having such nagging health problems. You said
Quote:

"So are asthma, tingling of tongue/lip/face/neck, mild swelling, sometime throat constriction symptoms of masto? "

The answer is a sound maybe, LOL . You can have those as allergies or triggers with a Mast Cell Disorder or just as allergies. You need allergy testing done first then you can broaden your testing to include other disorders. An elevated IgE usually means true allergies but you can have both true allergies and a mast cell disorder. I know, confusing isnt it? Read all you can here, talk further to your DR and ask us whatever you like. Heres hoping you dont have a mast cell disease :)
Ramona

Title: Re: new ... wondering if I have masto
Post by Anaphylaxing on 07/31/12 at 13:52:46

I agree with everyone else Sasha. My earliest symptoms began with tingling and occasional lip swelling too. Have you looked into oral allergy syndrome at all? That used to be the extend of my issues, but now like you it's almost everything under the sun :)

Do you live near a mast cell doc that could see you?

Title: Re: new ... wondering if I have masto
Post by Sasha on 08/23/12 at 08:25:51

I was checked twice on skin testing ... both times no foods came back positive ... both times mold came back as a delayed reaction (within 24-48 hours). I also seemed to get dermographia on my arm to the saline injection ... it got bigger than the histamine injection.

I was checked by blood test and my allergies are dust mite and shrimp (I haven't had shellfish in years ... but I have eaten sea-salt a lot).

For the past 2 months I haven't had any symptoms (since my last very severe one). I'm on a super strict diet ... and feel pretty much ok ... sometimes my asthma flares but nothing severe ... probably due to dustmite allergy. I spend a lot of time in doors and although I try to keep a clean house/clean bedding ... I'm sure there are still dustmites around.

My tryptase was checked twice ... both were exactly the same at "4". I don't know what my total IgE level is ... but the dr. checked my anti-IgE and said it was elevated antibody which means I have an autoimmune disorder that causes chronic hives ... but I rarely get hives. Another dr. I saw said that would not affect asthma but could cause swelling episodes.

I seem to be sensitive to a lot food. The last dr. said I could have an aspirin allergy which is difficult to diagnose but with that I would have to be on a strict diet. I can say that most high-salicylate food are triggers for me and most high-histamine foods are triggers. I realized recently that it isn't cheese that is causing the low-blood pressure ... I think it was the yeast in the bread (grilled cheese and pizza with no sauce) ...

Title: Re: new ... wondering if I have masto
Post by Joan on 08/23/12 at 09:36:08

It would be a good idea to see a mast cell disorder specialist who can clear up what's really happening. I think Dr. Castells would be the best choice, as your tryptase isn't looking like systemic mastocytosis is the problem, but you could have MCAS which she treats. She's also an allergist/immunologist, so she has a lot of experience sorting out what is allergy and what is mast cell dysfunction.

You'll see posted on this site testing that should be done besides tryptase. The tests can give doctors an idea how to best medicate you.

Have you mite-proofed your house, especially your bedding? Do you have a room air filter? Encasings make a huge difference. Upholstery on couches and chairs can be a problem, too.

The problem with mold allergy is that it's present in the air in huge quantities in wetter climates, and it can be inside as well as outside. Mold is in many canned, frozen, and bottled foods, such as tomatoes and juices.

If you're not on antihistamines daily, it looks like it would be a good idea.

Title: Re: new ... wondering if I have masto
Post by brigittegriffith on 08/23/12 at 12:52:19

Hi Sasha! I read that you were tested for autoimmune urticaria. I was diagnosed with the same thing 2.5 years ago, with symptoms going back 15 years. This is a mast cell disorder; and from my own experience and from what I've read, it goes way beyond hives. I believe that they are learning more and more about this condition all the time. I went on hiatus and stopped looking into my diagnosis for almost two years, and I was shocked when i came back to this forum (which is amazing :D)to hear what other symptoms they were finally recognizing with autoimmune urticaria. As someone posted to me the other day, urticaria is much bigger than itchy skin. So listen to your body and be viligent. That's where I am right now. I'm looking to get out of my hooky town and find a doctor who can actually help me and dial in some meds that will hopefully calm my system down! Best of luck to you girl!!!! ;)