Saw Dr. Vadas on Monday.
Since my bone marrow biopsy came back 'normal' (once again an abundance of eosinophils; which I've had with both bmb's and all three live blood analysis' I've done with the Homeopath/Naturopath) he wants to put Mastocytosis on the shelf for a few weeks and forget about it as a possible diagnosis. I am, however, to stay on the medications for it because apparently I need all the help I can get.
He's taking a more indepth look at the whole latex thing. Doing an IgE mediated blood test for latex. As well, we picked 5 of the foods I have trouble with or have had trouble with, from the now extensive list of possible cross-reactive latex foods and we're doing blood tests for those. For the next 6 weeks I am to avoid these foods, plants and other possible reactants, that are on the latex cross over lists, as well as stay on the low histamine diet. Dr. Vadas said nicely, "I guess you'll be eating a lot of meat." I didn't have the heart to tell him that my gut can't tolerate pork & beef, and sometimes has trouble with chicken, turkey, etc. My husband made a joke about me eating lots of tofu...only trouble is, SOY is on the list of DO NOT EATS. So, today I went to get the blood tests (cost us $120.00 because they aren't 'normal' tests.)
It's easier to list what I CAN eat, rather than what I can't. So far, I've got:
oats
chicken (when I can tolerate it)
salmon (never have a problem with it)
raspberries
blueberries
rice
lemon
That's it. I'm likely to lose some of this bloody weight on a diet like this. Gonna have to be careful not to get constipated. Not sure if any of you fluctuate between severe constipation and diahrea but I do. No fun. Rarely is my gut balanced these days. Hasn't been for about 3 years now. And getting worse. It's weird how you get used to it.
I AM going to say this. I've been trying to cut out wheat from my diet for the past two weeks, since seeing my family GP, who can't believe that we haven't tested me for Celiac yet. His suggestion that I try it. When I don't eat it, it seems, my bones don't hurt half as much. It's incredible really. Nor do I bloat half as bad. It turns out that wheat is on the list of latex-cross over reactive foods...I didn't know that. I thought I had the list but it turns out it is WAAAAAAAAAAAAAAAAAAAAAY more extensive than I thought or had researched. Dr. Vadas says there are new lists. And, this is one of those cases where self-education is good for the patient.
Additionally, connected or not?, I went for the visual field test at my Optometrist's office today. She needed this last test to finalize the report for my GP and Dr. Vadas. Seems my left optic nerve has NOT repaired itself the way that we had all hoped it would over the past 3 years, and is worse. Love that question: "Fiona, have you been tested for MS?" I have. They found very small lesions on my brain that they said were of no consequence unless they get bigger. I sense another trip to Sudbury and an MRI sometime soon...
Hysterectomy is on hold. Dr. Vadas needs to sign off on the OK for it, due to the whole anaphylaxis thing. He says unless I have cancer in my uterus, NO WAY. Apparently, I'm too high risk and whatever pain I am in will have to stay for now. We have to get a handle on the anaphylaxis first. That's our first priority. This led to the discussion of Catemenial Anaphylaxis. This funky phrase basically means anaphylaxis during your female cycle. Ergo, more reactions during ovulation and menstruation...welcome to my world. This could be Masto too though.
So...sort of feel like I'm in the midst of a HUGE guessing game, OH WAIT, I AM!!!!! I'm past being frustrated. I realize now the importance of 'elimination' in this game, and my body needs me to remain calm, focused and as happy & healthy as I can be. This includes resting on those days I just can't do anything. Like yesterday. I'm exhausted today too, and haven't done much. And, this means being kind to myself.
No more telling myself that I'm a loser; that I'm useless; that I'm worthless; that I'm 'fine' and to just get on with it; that I've somehow 'created' this illness/whatever it is in myself.; and, no more hating myself for where I've ended up. What I must do is to treat myself with kindness and care. If I loved myself half as much as I love my children, I might feel as secure, loved, worthwhile, happy and healthy as they do. I can do this much for me.
Since my bone marrow biopsy came back 'normal' (once again an abundance of eosinophils; which I've had with both bmb's and all three live blood analysis' I've done with the Homeopath/Naturopath) he wants to put Mastocytosis on the shelf for a few weeks and forget about it as a possible diagnosis. I am, however, to stay on the medications for it because apparently I need all the help I can get.
He's taking a more indepth look at the whole latex thing. Doing an IgE mediated blood test for latex. As well, we picked 5 of the foods I have trouble with or have had trouble with, from the now extensive list of possible cross-reactive latex foods and we're doing blood tests for those. For the next 6 weeks I am to avoid these foods, plants and other possible reactants, that are on the latex cross over lists, as well as stay on the low histamine diet. Dr. Vadas said nicely, "I guess you'll be eating a lot of meat." I didn't have the heart to tell him that my gut can't tolerate pork & beef, and sometimes has trouble with chicken, turkey, etc. My husband made a joke about me eating lots of tofu...only trouble is, SOY is on the list of DO NOT EATS. So, today I went to get the blood tests (cost us $120.00 because they aren't 'normal' tests.)
It's easier to list what I CAN eat, rather than what I can't. So far, I've got:
oats
chicken (when I can tolerate it)
salmon (never have a problem with it)
raspberries
blueberries
rice
lemon
That's it. I'm likely to lose some of this bloody weight on a diet like this. Gonna have to be careful not to get constipated. Not sure if any of you fluctuate between severe constipation and diahrea but I do. No fun. Rarely is my gut balanced these days. Hasn't been for about 3 years now. And getting worse. It's weird how you get used to it.
I AM going to say this. I've been trying to cut out wheat from my diet for the past two weeks, since seeing my family GP, who can't believe that we haven't tested me for Celiac yet. His suggestion that I try it. When I don't eat it, it seems, my bones don't hurt half as much. It's incredible really. Nor do I bloat half as bad. It turns out that wheat is on the list of latex-cross over reactive foods...I didn't know that. I thought I had the list but it turns out it is WAAAAAAAAAAAAAAAAAAAAAY more extensive than I thought or had researched. Dr. Vadas says there are new lists. And, this is one of those cases where self-education is good for the patient.
Additionally, connected or not?, I went for the visual field test at my Optometrist's office today. She needed this last test to finalize the report for my GP and Dr. Vadas. Seems my left optic nerve has NOT repaired itself the way that we had all hoped it would over the past 3 years, and is worse. Love that question: "Fiona, have you been tested for MS?" I have. They found very small lesions on my brain that they said were of no consequence unless they get bigger. I sense another trip to Sudbury and an MRI sometime soon...
Hysterectomy is on hold. Dr. Vadas needs to sign off on the OK for it, due to the whole anaphylaxis thing. He says unless I have cancer in my uterus, NO WAY. Apparently, I'm too high risk and whatever pain I am in will have to stay for now. We have to get a handle on the anaphylaxis first. That's our first priority. This led to the discussion of Catemenial Anaphylaxis. This funky phrase basically means anaphylaxis during your female cycle. Ergo, more reactions during ovulation and menstruation...welcome to my world. This could be Masto too though.
So...sort of feel like I'm in the midst of a HUGE guessing game, OH WAIT, I AM!!!!! I'm past being frustrated. I realize now the importance of 'elimination' in this game, and my body needs me to remain calm, focused and as happy & healthy as I can be. This includes resting on those days I just can't do anything. Like yesterday. I'm exhausted today too, and haven't done much. And, this means being kind to myself.
No more telling myself that I'm a loser; that I'm useless; that I'm worthless; that I'm 'fine' and to just get on with it; that I've somehow 'created' this illness/whatever it is in myself.; and, no more hating myself for where I've ended up. What I must do is to treat myself with kindness and care. If I loved myself half as much as I love my children, I might feel as secure, loved, worthwhile, happy and healthy as they do. I can do this much for me.
12 comments:
How wonderful to have such a good doctor.
What's up with those eisonophils? They can cause havoc in the gut too, can't they? Not that you need another disease!
Protein is a big problem for me too. I eat a lot of rice.
Please do keep taking care. You are worth it.
Damn girl you've been going through the ringer lately! I hope you are able to name this illness before much longer so you can possibly treat it and get on with your life.
I've been really busy lately with my girls playing volleyball. I still check your post though so keep writing. I hope you are OK I know it's a tough road but hang in there.
Fiona you do have friends all over the world who actually care about you so don't forget it. :)
Thank you, both of you. Kevin, I feel the love, I truly do...and appreciate it more than I can possibly express. And, glad to hear you've been busy with your girls.
Tough road indeed. But as they say, what don't kill ya makes ya stronger!
I did ask Dr. Vadas IF he thought I DIDN'T have Masto. and he said that we can't say that yet, ergo it's shelved temporarily. He said it's really difficult to diagnose, so let's try the latex route for now and see how we do...ok...I'll do as I'm told for once.
Anyway, I am in a LOT of physical pain this evening, so it's off to the heat pad for me.
Anonymous...Namaste. And thank you.
One resource not listed on your page is "IA Support," which is a Yahoo group for people who are diagnosed with Idiopathic Anaphylaxis (IA). I moderate the group, and it's a good resource for people whose anaphylaxis is recurrent and unexplained. Our 232 members include people diagnosed with mastocytosis, mast cell activation disorder, food allergies and IA. Anyone interested is welcome to join us. Our URL: http://health.groups.yahoo.com/group/iasupport
Candace, THANKS!!! Would be MORE than happy to add it to my page, and to share the resource.
Dr. Vadas is Toronto's specialist in IA...ergo I was referred to him.
Not sure whether to laugh or cry when he calls me "Mystery Woman". What he IS really good about it reassuring me that this ISN'T in my head. And he's really trying to find out what is going on.
K, I will add your links and page. thank you sooooooo much!!!
HI! I HAVE SYSMETIC MASTCYTOSIS AND I'M ON CLADRIBINE (SPELLING?) HAVE BEEN SINCE NOV 08. I ALSO KNOW IT'S HARD WHEN THE DRS DON'T KNOW WHAT TO DO WITH YOU. KEEP YOUR CHIN UP!!
Fiona, I thought of you when I read this description of toxic oxalate plants....
“These plants contain irritating substances known as oxalate salts.
Fiona, I thought of you when I read this description of houseplants that contain toxic oxalates:
"Eating these plants may cause irritation of the mucous membranes, including pain and/or swelling of the mouth, the lips, and the tongue. Breathing should be observed, since the swelling may interfere with the air passages.” She also provides a brief list of plants that can also cause stomach upset all of which are toxic oxalates."
Thank goodness you don't eat houseplants! Seriously, many plant foods are high in oxalates. I am following a low oxalate diet myself. If you want to learn more about oxalates and the low oxalate diet, here's the place:
www.lowoxalate.info
It seems that oxalates MAY cause histamine release, but there is no scientific evidence yet to prove it, aside from the story of the cat that ate dieffenbachia leaves.
I'm not suggesting this is your only problem, but it could be one piece of the mystery puzzle. Gosh, and whatever we can make better helps.
I've written about it on my mast cell blog, but I'm trying to create a single oxalate thread at
oxalatesnomore.blogspot.com
Sending you lots of love, Faith
Thank you Anonymous on Cladribine (sp?) and Faith. I'll look into this oxalate thingy...and am keeping the old chin up!
I'm feeling infinitely better on this super strict diet. My gut isn't freaking out or anything. Weird. Am reading labels SUPER carefully too. Re-educating myself some more.
I've also created a 'work' space/creative space for myself in the house. Have almost finished it. It's uncluttered. Have fresh air coming in off the fields, can see the road down the hill, and it feels wonderful. Spiritually, emotionally, and even physically this feels great. I'd like to thank the rainy, overcast, cool and wonderfully fresh weather for co-operating with my endeavour. There's no way I could do this in the heat.
Much love, blessings and hope to each of you. Forward ho, with the good fight!
xoxoxo
Fiona
For Many Peoples Mastocytosis Is a Mystry as this disease is not so common, Very Rare. But people who suffer from such disease must set a Example for those who dealing with it and you have done that...Cheers!!!
Mastocytosis is a difficult one to discuss only because it is a simple yet complicated rare disease. Basically it is when the body produces to many Mast Cells (key part of the immune system) excessive cells. There are two types of Mastocytosis Cutaneous (skin) or urticaria pigmentosa, which affects the outer skin and systemic which affects the inner workings of the body. For more info
Go To
http://www.fuelthemind.com/health/health/mastocytosis_disease.html
For Many Peoples Mastocytosis Is a Mystry as this disease is not so common, Very Rare. But people who suffer from such disease must set a Example for those who dealing with it and you have done that...Cheers!!!
Mastocytosis is a difficult one to discuss only because it is a simple yet complicated rare disease. Basically it is when the body produces to many Mast Cells (key part of the immune system) excessive cells. There are two types of Mastocytosis Cutaneous (skin) or urticaria pigmentosa, which affects the outer skin and systemic which affects the inner workings of the body. For more info
Go To
http://www.fuelthemind.com/health/health/mastocytosis_disease.html
With the excessive production of mast cells the body releases too much chemicals such as cytokines and histamines, it will cause itching, abdominal cramping, nausea, vomiting skin lesions, and in some cases can lead to shock or low blood pressure.
Diagnosing Mastocytosis : your doctor can determine if you have cutaneous (skin) Mastocytosis after inspecting the skin, the may see the appearance of too many mast cells and do a biopsy to confirm any suspicions. Systemic Mastocystosis can be determined a few ways, through bone scanning, bone marrow testing, blood-work and also through urine. The high amount of the fore mentioned chemicals in the blood or urine is a way doctors can determine if you have the systemic type of this disease.
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