Mary Beth,
I remember you saying you have been able to re-add certain foods to your diet. Do you find that some intolerances come and go, along with other mast-cell-related symptoms? I believe I have had a simplistic view of what foods are working for me - either YES or NO - and that is clearly true about gluten, dairy, and eggs (and I believe soy). But I wonder whether some of the histamine-rich foods are more likely to be tolerated some days than others (when overall body irritation is low, the heat isn't horrible, tree pollens are out of the picture, etc.).
I am not sure how I will learn to tell the difference between foods that are an absolute no, and those that I need to label "proceed with caution" (if there really is such a distinction - as I said, I may just be waiting for the other shoe to drop).
Arlene,
I wonder whether getting an overall histamine reaction under control might not reduce the 'load' for GI symptoms, and I believe your experiment with antihistamine + nasalcrom suggests that might be a useful approach, though not a magic bullet. Since I do seem to be more prone to H1-type reactions when I've eaten something that I react to, I am hoping this is the case - and that I can use OTC H1 blockers as part of the toolkit. (I am still looking for Nasalcrom, generic or otherwise, and still not sure the OTC side effects are worth the possible help.)
I have been drinking tons of home-made seltzer (the SodaStream was a consolation prize I gave myself - I figure I have saved so much money on restaurants this past few months...) I don't use the flavorings they sell, but have diluted herbal tea with it for an iced spritzer), and also tolerate San Pellegrino water. I think it must be the additives in soda that are problematic.
And yes, I can tell how much you hate this, and I don't blame you a bit.
Sara
Mast Cells in Gastrointestinal Disease
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Mary Beth,
I appreciate your concern and suggestion for me.
I have experimented with Zyrtec, Claritin, Histame, and most recently CoQ10 (not for mast cells). I haven't noticed any improvement, and suspect that they made things worse. I had extreme bloating and gas from the CoQ10, ordered from Freeda. Once I stopped it, the gas went away. I'm getting reluctant to test anything new. I seem to be highly sensitive, perhaps to chemicals or dyes in the drugs.
I'll be going on Medicare at the beginning of next year, and won't have regular insurance coverage for Gastrocom. I think we've discussed that there isn't any generic form available here or overseas. It, like Entocort, would put me in the doughnut hole with the first prescription. I probably should see an allergist while I still have insurance coverage, and test the Gastrocom to see if it allows me to add new foods. I'm able to control my symptoms so that they are manageable, but it would be nice to eat more than 10 foods.
Gloria
I appreciate your concern and suggestion for me.
I have experimented with Zyrtec, Claritin, Histame, and most recently CoQ10 (not for mast cells). I haven't noticed any improvement, and suspect that they made things worse. I had extreme bloating and gas from the CoQ10, ordered from Freeda. Once I stopped it, the gas went away. I'm getting reluctant to test anything new. I seem to be highly sensitive, perhaps to chemicals or dyes in the drugs.
I'll be going on Medicare at the beginning of next year, and won't have regular insurance coverage for Gastrocom. I think we've discussed that there isn't any generic form available here or overseas. It, like Entocort, would put me in the doughnut hole with the first prescription. I probably should see an allergist while I still have insurance coverage, and test the Gastrocom to see if it allows me to add new foods. I'm able to control my symptoms so that they are manageable, but it would be nice to eat more than 10 foods.
Gloria
You never know what you can do until you have to do it.
Good luck Gloria. Being down to 10 foods certainly isn't good. But, I have heard of this scenario before on masto forum. Also, my sister only eats a few foods (maybe less than 10) to manage her symptoms. She decided to stop trying new foods as it always set her back. She said she actually feels better now that she's not always testing something.
I also would like to add more foods but don't know if I will go on gastrocrom. However it may come to that since my hypertensive spikes seem related to mast cell activity. I NEVER want another hypertensive crisis.
Mary Beth
I also would like to add more foods but don't know if I will go on gastrocrom. However it may come to that since my hypertensive spikes seem related to mast cell activity. I NEVER want another hypertensive crisis.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Mary Beth,
Your symptoms sound extreme and frightening, and I don't blame you for never wanting *any* of them again. I find this area really difficult to ponder, compared to the issues around gluten antibodies, etc. I was really impressed with Arlene's reasoning and adaptation of nasalcrom, but am not sure my thinking is sufficiently up to snuff yet to make a well-thought-out decision about giving that a try. I mean, I can do exactly what she did, but other than varying the dose I don't believe I can think through a way to make it work better if I have different results.
I hope I can gradually learn more about how I react as my journaling skills improve. I think some reactions for me take place over days, and sometimes it's not just a particular food, but a reaction that is greater when I'm already slightly reactive to something else, and mild or nonexistent when I'm stable and strong. I do, like Gloria, sometimes have mouth or tongue reactions that seem much sooner. Runny nose and a nosebleed overnight or in the morning are also connected. As you know, I am looking forward to the new MRT test!
Is your thinking that the reason for your more extreme mast-cell activation is because you have a greater number of mast cells, as opposed to more of a 'hair-trigger' that sets off the reaction? Whereas many of us who also have mast-cell involvement have an activation issue, but not necessarily more of the cells? I wish my questions in this area were getting better. I have some homework to do.
Thanks,
Sara
Your symptoms sound extreme and frightening, and I don't blame you for never wanting *any* of them again. I find this area really difficult to ponder, compared to the issues around gluten antibodies, etc. I was really impressed with Arlene's reasoning and adaptation of nasalcrom, but am not sure my thinking is sufficiently up to snuff yet to make a well-thought-out decision about giving that a try. I mean, I can do exactly what she did, but other than varying the dose I don't believe I can think through a way to make it work better if I have different results.
I hope I can gradually learn more about how I react as my journaling skills improve. I think some reactions for me take place over days, and sometimes it's not just a particular food, but a reaction that is greater when I'm already slightly reactive to something else, and mild or nonexistent when I'm stable and strong. I do, like Gloria, sometimes have mouth or tongue reactions that seem much sooner. Runny nose and a nosebleed overnight or in the morning are also connected. As you know, I am looking forward to the new MRT test!
Is your thinking that the reason for your more extreme mast-cell activation is because you have a greater number of mast cells, as opposed to more of a 'hair-trigger' that sets off the reaction? Whereas many of us who also have mast-cell involvement have an activation issue, but not necessarily more of the cells? I wish my questions in this area were getting better. I have some homework to do.
Thanks,
Sara
Sara,
I'm not sure why I am different, but I suspect something genetic as I'm not the only one in my family with similar issues. People with MC may simply have histamine intolerance from not being able to rid their body of histamine becasue of low DAO levels, and this could resolve with gut healing. My issues span beyond my gut so I may have a deficiency of the other enzyme, HNMT. All of my tests to date don't show excess mast cells, but that's not to say they aren't there. It may be that my mast cells simply degranulate easily. No one knows, but the bottom line is I have excess histamine and all of the symptoms to go along with it.
Mary Beth
I'm not sure why I am different, but I suspect something genetic as I'm not the only one in my family with similar issues. People with MC may simply have histamine intolerance from not being able to rid their body of histamine becasue of low DAO levels, and this could resolve with gut healing. My issues span beyond my gut so I may have a deficiency of the other enzyme, HNMT. All of my tests to date don't show excess mast cells, but that's not to say they aren't there. It may be that my mast cells simply degranulate easily. No one knows, but the bottom line is I have excess histamine and all of the symptoms to go along with it.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
I wonder whether your underlying excess histamine issue is something that could simmer and then be triggered into a problem, by consequences of gluten exposure, like other conditions we've discussed before. And clearly not of the type that goes away with gut healing, as some things do - maybe because there are non-food factors like heat and exercise that also have a powerful effect? It is interesting that it's a family issue, and must be frustrating because it's so much more poorly understood than other, more common conditions with a genetic component.
I've been doing some reading but am really filling up with a backlog of not-quite-formulated questions. More reading... I do understand that taking Histame wouldn't help with a deficiency of the HNMT enzyme, but am not sure whether Histame might not help clear histamine beyond what's in the food it's taken with - so for histidine rich foods, maybe taking Histame later might 'catch up' with histamine by the time it's been converted from the histidine...
But DAO/Histame would only be useful for gut reactions, so wouldn't help for something like hives, etc. - is that right? It would be nice if Histame would enable a low dose of an antihistamine to get a bigger job done for the whole system, since rogue/excess histamine can sure wreak a range of havoc. (I also see you can buy the HMNT enzyme, extracted from rat liver - or was it kidney? - for $110/mg... clearly that's not what we're looking for, on any level. The Internet is a large and confusing place.)
--Sara
I've been doing some reading but am really filling up with a backlog of not-quite-formulated questions. More reading... I do understand that taking Histame wouldn't help with a deficiency of the HNMT enzyme, but am not sure whether Histame might not help clear histamine beyond what's in the food it's taken with - so for histidine rich foods, maybe taking Histame later might 'catch up' with histamine by the time it's been converted from the histidine...
But DAO/Histame would only be useful for gut reactions, so wouldn't help for something like hives, etc. - is that right? It would be nice if Histame would enable a low dose of an antihistamine to get a bigger job done for the whole system, since rogue/excess histamine can sure wreak a range of havoc. (I also see you can buy the HMNT enzyme, extracted from rat liver - or was it kidney? - for $110/mg... clearly that's not what we're looking for, on any level. The Internet is a large and confusing place.)
--Sara
Sara,
My triggers are many, gluten (and other foods) being just one. I have had episodes from many drugs, air travel, strong scents, my period, and now intense exercise is on that list. When my body experiences a rapid change, like with exercise or air travel, then it perceives a problem and can cause mast cells to go crazy. Histame may help me but most likely a mast cell stabilizer is a better choice. I need something to prevent the mast cells from degranulating in the first place. My BP response to mast cell degranulation is a spike, not a drop like with other people. I have been on a fairly strict low histamine diet the last few weeks and my BP and symptoms of hyperadrenergic POTS are greatly improved. I have noticed that when I eat high histamine foods I get a spike a few hours later. From my research I probably need a norepinephrine reuptake inhibitor as well, like wellbutrin, to control the POTS.
A bit of good news though - I am back to eating legumes (no soy or red beans) and am doing well. I love beans and lentils and peas and this is a great option since I have limits on veggie and fruit intake.
Mary Beth
My triggers are many, gluten (and other foods) being just one. I have had episodes from many drugs, air travel, strong scents, my period, and now intense exercise is on that list. When my body experiences a rapid change, like with exercise or air travel, then it perceives a problem and can cause mast cells to go crazy. Histame may help me but most likely a mast cell stabilizer is a better choice. I need something to prevent the mast cells from degranulating in the first place. My BP response to mast cell degranulation is a spike, not a drop like with other people. I have been on a fairly strict low histamine diet the last few weeks and my BP and symptoms of hyperadrenergic POTS are greatly improved. I have noticed that when I eat high histamine foods I get a spike a few hours later. From my research I probably need a norepinephrine reuptake inhibitor as well, like wellbutrin, to control the POTS.
A bit of good news though - I am back to eating legumes (no soy or red beans) and am doing well. I love beans and lentils and peas and this is a great option since I have limits on veggie and fruit intake.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Mary Beth,
That's great news about the legumes. Also great your low-histamine diet is improving BP & POTS symptoms. It does sound as though stabilizing mast cells would be of great help. I didn't know Wellbutrin was a norepinephrine reuptake inhibitor - I just know it worked differently from SSRIs. I hope the docs at our upcoming visits are able to keep up with your knowledge and offer useful insight of their own.
I've had reactions to strong scents in the past - I am certain you are right that I need to look into mast cells further.
Still excited you've been able to add legumes. What a help that must be.
Sara
That's great news about the legumes. Also great your low-histamine diet is improving BP & POTS symptoms. It does sound as though stabilizing mast cells would be of great help. I didn't know Wellbutrin was a norepinephrine reuptake inhibitor - I just know it worked differently from SSRIs. I hope the docs at our upcoming visits are able to keep up with your knowledge and offer useful insight of their own.
I've had reactions to strong scents in the past - I am certain you are right that I need to look into mast cells further.
Still excited you've been able to add legumes. What a help that must be.
Sara
Well put Mary Beth...
I'm suspicious that the episode I had at the beach was mast cell related and triggered by sun exposure. (Had a four day episode of nausea, D, vomiting, joint pain, fatigue that landed me in the ER due to dehydration.) It went on far longer than a typical "24 hour bug" and just didn't feel like a virus. Plus, that big hive in the middle of my face at the time of onset of GI symptoms makes me suspicious. I'm (finally) going through the specialized tests for masto/MCAD, so we'll see if anything comes up.
I find that one of the greatest challenges of dealing with a mast cell disorder is the vast number of potential triggers. If food was the only trigger, it would be a bit easier to manage trigger exposure. But, there are so many other triggers that can cause mast cells to degranulate. Check out this list of potential triggers from the Mastocytosis Society:
Alcohol - (Huge trigger for me! I learned the hard way not even a sip of alcohol is tolerable!)
Anesthetic agents
Antibiotics
Bacteria or fungi
Certain foods
Cold (temperature)
Coloring & flavoring in foods
Coloring & flavoring in medications
Emotional upset
Environmental toxins
Exercise or exertion
Fatigue
Fever
Friction
Heat (temperature)
Infection with viruses, bacteria or fungi
Mold
MSG
Narcotics (Another of my triggers...caused respiratory distress. Very scary!)
Perfumes
Pesticides
Plasma expanders (i.e. dextran)
Preservatives
Room freshener sprays
Smells
Spices
Stress
Sunlight
Unless you opt to live in a dark room and never leave it, it is virtually impossible to avoid most of these triggers. The other tricky thing is that what can set you off one day, may not the next day. I can't help but wonder if this is why exercise didn't bother you Mary Beth, and then suddenly became an issue, causing you to become symptomatic. Tricky to manage, for sure.
Great news on the legumes Mary Beth! I hope you continue to have good luck with your response. I love beans, particularly being a vegetarian, but they are a big no-no for me, at least for now. But, you give me hope!
Hope your upcoming appointments go well Mary Beth.
Good health to all,
Julie
Mast cells going crazy really sums it up nicely. I couldn't have said it better. Although my mast cell issues are related to too many mast cells, as opposed to "prickly" mast cells that respond inappropriately to stimulus, the end result is similar. Meaning simply, becoming symptomatic.When my body experiences a rapid change, like with exercise or air travel, then it perceives a problem and can cause mast cells to go crazy.
I'm suspicious that the episode I had at the beach was mast cell related and triggered by sun exposure. (Had a four day episode of nausea, D, vomiting, joint pain, fatigue that landed me in the ER due to dehydration.) It went on far longer than a typical "24 hour bug" and just didn't feel like a virus. Plus, that big hive in the middle of my face at the time of onset of GI symptoms makes me suspicious. I'm (finally) going through the specialized tests for masto/MCAD, so we'll see if anything comes up.
I find that one of the greatest challenges of dealing with a mast cell disorder is the vast number of potential triggers. If food was the only trigger, it would be a bit easier to manage trigger exposure. But, there are so many other triggers that can cause mast cells to degranulate. Check out this list of potential triggers from the Mastocytosis Society:
Alcohol - (Huge trigger for me! I learned the hard way not even a sip of alcohol is tolerable!)
Anesthetic agents
Antibiotics
Bacteria or fungi
Certain foods
Cold (temperature)
Coloring & flavoring in foods
Coloring & flavoring in medications
Emotional upset
Environmental toxins
Exercise or exertion
Fatigue
Fever
Friction
Heat (temperature)
Infection with viruses, bacteria or fungi
Mold
MSG
Narcotics (Another of my triggers...caused respiratory distress. Very scary!)
Perfumes
Pesticides
Plasma expanders (i.e. dextran)
Preservatives
Room freshener sprays
Smells
Spices
Stress
Sunlight
Unless you opt to live in a dark room and never leave it, it is virtually impossible to avoid most of these triggers. The other tricky thing is that what can set you off one day, may not the next day. I can't help but wonder if this is why exercise didn't bother you Mary Beth, and then suddenly became an issue, causing you to become symptomatic. Tricky to manage, for sure.
Great news on the legumes Mary Beth! I hope you continue to have good luck with your response. I love beans, particularly being a vegetarian, but they are a big no-no for me, at least for now. But, you give me hope!
Hope your upcoming appointments go well Mary Beth.
Good health to all,
Julie
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Thanks Julie. You are right that things can change very rapidly with mast cell disease. I am now able to exercise again after things have calmed down. What specialist are you seeing?
Arlene,
The tests are tryptase (blood test) and urine histamine and prostaglandin D2. If you have skin manifestations (urticaria pigmentosa) a skin biopsy can be done. You could also have intestinal biopsies. And then there's bone marrow biopsy, but that wouldn't be indicated unless you had other abnormal tests.
Mary Beth
Arlene,
The tests are tryptase (blood test) and urine histamine and prostaglandin D2. If you have skin manifestations (urticaria pigmentosa) a skin biopsy can be done. You could also have intestinal biopsies. And then there's bone marrow biopsy, but that wouldn't be indicated unless you had other abnormal tests.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Gloria,
Mary Beth's answer will be more complete - but I believe that your GP or PCP can run those tests. I made a note to ask my PCP about them, based on another thread, where Mary Beth drew my attention to mast cell issues. Here is a link to that thread for context:
http://www.perskyfarms.com/phpBB2/viewt ... t=tryptase
I found that thread super-awesome, because it persuaded me to cancel my app't with the celeb. celiac doctor (you will see why), and now that my Enterolab results seem to indicate I probably am a 'true' celiac, I can't really see why I need to go further to prove it to him or anyone else. That appointment would have been next week... so it's not like I've been missing out on any help! (I am truly grateful I haven't needed to see a doctor with a 4-month wait for an appointment before I could start feeling better.)
If you already have a relationship with an allergist I'm sure there is no reason not to proceed in that way.
I have my sweet niece here all next week, and then am going to get those tests arranged (along with the bone density DEXA I canceled when first sick, and basic bloods - can't wait to see what my 'new normal' is). If you have those tests run, I will be very interested in what you learn.
Wishing you all the best,
Sara
Mary Beth's answer will be more complete - but I believe that your GP or PCP can run those tests. I made a note to ask my PCP about them, based on another thread, where Mary Beth drew my attention to mast cell issues. Here is a link to that thread for context:
http://www.perskyfarms.com/phpBB2/viewt ... t=tryptase
I found that thread super-awesome, because it persuaded me to cancel my app't with the celeb. celiac doctor (you will see why), and now that my Enterolab results seem to indicate I probably am a 'true' celiac, I can't really see why I need to go further to prove it to him or anyone else. That appointment would have been next week... so it's not like I've been missing out on any help! (I am truly grateful I haven't needed to see a doctor with a 4-month wait for an appointment before I could start feeling better.)
If you already have a relationship with an allergist I'm sure there is no reason not to proceed in that way.
I have my sweet niece here all next week, and then am going to get those tests arranged (along with the bone density DEXA I canceled when first sick, and basic bloods - can't wait to see what my 'new normal' is). If you have those tests run, I will be very interested in what you learn.
Wishing you all the best,
Sara
Sara,
You are right - anyone can order the tests. I went to my former PCP (fired him) and he ordered them. There was some problem with the lab and I had to redo the 24 hour urine collection. Ugh. be aware that the urine histamine will only show elevated histamine right after a reaction - if it's a good day then it will be normal. This is partly why I never got abnormal results I believe. It's hard to predict a bad day. You can continue to take antihistamines - it won't affect the tests.
Mast cells doctors know that someone can have normal lab values and still be symptomatic. I was told that if antihistamines helped then that certainly points in the direction of mast cell disorder. The doses that mast cell patients take are very high. Some of them take benedryl several times per day. Dr. Greenberger wanted me to take 300 mg zantac!! I hope I never get that sick. I take an antihistmaine daily but that's it for now.
Mary Beth
You are right - anyone can order the tests. I went to my former PCP (fired him) and he ordered them. There was some problem with the lab and I had to redo the 24 hour urine collection. Ugh. be aware that the urine histamine will only show elevated histamine right after a reaction - if it's a good day then it will be normal. This is partly why I never got abnormal results I believe. It's hard to predict a bad day. You can continue to take antihistamines - it won't affect the tests.
Mast cells doctors know that someone can have normal lab values and still be symptomatic. I was told that if antihistamines helped then that certainly points in the direction of mast cell disorder. The doses that mast cell patients take are very high. Some of them take benedryl several times per day. Dr. Greenberger wanted me to take 300 mg zantac!! I hope I never get that sick. I take an antihistmaine daily but that's it for now.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer