Let me see if I can complement what Mary Beth has so nicely explained. A few more thoughts...
"Mast cell issues" as we often call them on this board can range from mild to life threatening. A person with problematic mast cells can have strictly skin involvement or in the most serious cases, can have mast cell leukemia or aggressive systemic mastocytosis. I find it helpful to think about mast cell issues on a continuum. Again, they can range from very mild symptoms to life threatening or worse.
If you believe you have a mast cell issue then the question is where do you fall on the continuum? The results of the specialized tests, in combination with your symptoms, will help answer the question of where you fall on the continuum. And as Mary Beth said, if you get positive results on the baseline mast cell tests, then you may move on to the next set of tests.
The next thing to remember, and I think this is so important, is that understanding mast cell issues is an evolving science for physicians. If your doctor, PC or specialist (yes, even allergist), isn't familiar with the role of mast cells in GI distress, or systemic issues, don't be surprised. Mastocytosis (systemic mast cell problems affecting multiple systems) is considered a rare disease and is not widely recognized. Mast cell activation disorder (MCAD) is perhaps even less recognized or understood. The "experts" (worldwide) in the field of mast cell disorders are currently working on coming to a consensus on the diagnostic parameters for MCAD. So, even the world's leading researchers/clinicians in mast cell problems are still trying to put all the pieces together. Knowing this, you really can't expect the average physician, specialist or otherwise, to be very knowledgable on this issue. If your physician is knowledgable, then that's a bonus! Otherwise, educate yourself as much as possible and then be prepared to play an active role in your care and treatment.
Next, keep in mind that even if you have negative results on the specialized mast cell tests, this doesn't necessarily mean that you don't have mast cells issues. (As Mary Beth noted.) This is one of the points that is being hotly contested amongst the experts. If an individual presents with a certain collection of mast cell related symptoms, but has no positive test results, what does this mean? The current thinking is this person likely has MCAD. They present with clear symptomatic evidence of mast cell activation, but no positive lab results. This person may then go on the standard anti-histamine protocol to see if they get relief from symptoms. As Mary Beth said, if the symptoms are relieved by the anti-histamines, this is considered diagnostic and supports the diagnosis of MCAD.
Now to the tests. Testing is tricky because many of the levels measured "capture" a moment in time. (Like blood sugar.) If the level isn't captured at just the right moment, when the mast cells are really firing off their contents, then the test will likely be normal. This is why it is so difficult to get a definitive diagnosis. Negative or normal results don't necessarily rule out mast cell problems. As Mary Beth said, the experts know that normal results can be in place, even with a mast cell problem being present.
Some of these tests can definitely be ordered by your PCP, others will require a specialist. I currently have two tests that are going to be sent out to Mayo that were ordered by my physician. My other doctors would have no idea about these tests.
Mary Beth nicely covered the tests to request. I would only add that PP should strongly consider the specialized mast cell staining the next time they have a colonoscopy. If you have GI issues and suspect mast cell problems, it only makes sense to have the special biopsy for mast cell involvement.
Over the past two years (since my ME diagnosis) I have begun to have other symptoms that indicate I may have a systemic issue and not just a gut issue with mast cells. This is why I am having more testing. I just completed the 24 hour urine and another serum tryptase test. The urine test isn't bad, you just need to be pretty much be at home the entire time to do it. The tests that are going to Mayo are methylhistamine and a gene mutation test as well.
For my mast cell symptoms I currently take:
Zyrtec 2x/day
Zantac 150 mg 2x/day
Singulair 1x/day
Nexium 2x/ day
Benadryl on top of all of this as needed. I mention all of this to say that this is an example of the continuum I mentioned. My symptoms have broken through and expanded even with treatment, so more meds and further testing is warranted. I'm hoping for the best, but am suspicious that something much larger than just a gut issue is going on here.
I hope this overview will lend some further understanding about mast cell issues. It's an evolving topic and one that will likely have greater implications as doctors come to better understand the role of mast cells.
Wishing you good health,
Julie
Mast Cells in Gastrointestinal Disease
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Julie,
Great post Julie - thanks for taking the time to explain it to others.
What is the gene test? I actually had a BMB and don't have C-Kit mutation (I can't remember what else they looked at, but it was normal). I have had many symptoms beyond gut issues but still think it's MCAD and not systemic masto. I think mast cell disorders are grossly under diagnosed. Because doctors only treat symptoms and don't connect the dots, someone could be treated by an allergist for allergy symptoms, a dermatologist for rashes, a GI for IBS and GERD, a cardiologist for chest pain and tachycardia etc That's what was happening to me, but I knew better and knew all symptoms were related.
And you are right about it being an evolving field. I no longer get angry that they don't understand. Instead I try to do my homework and find a doctor who understands. I am hoping the 2 new docs I am seeing will be helpful. I also now bring articles with me to educate them. Because I now know so much they aren't sarcastic like they used to be.
Julie, do you have symptoms of POTS or autonomic disorder? There is overlap in mast cell symptoms and POTS. I seem to have the hyperadrenergic type that involved high blood pressure, which is a rare presentation.
Mary Beth
Great post Julie - thanks for taking the time to explain it to others.
What is the gene test? I actually had a BMB and don't have C-Kit mutation (I can't remember what else they looked at, but it was normal). I have had many symptoms beyond gut issues but still think it's MCAD and not systemic masto. I think mast cell disorders are grossly under diagnosed. Because doctors only treat symptoms and don't connect the dots, someone could be treated by an allergist for allergy symptoms, a dermatologist for rashes, a GI for IBS and GERD, a cardiologist for chest pain and tachycardia etc That's what was happening to me, but I knew better and knew all symptoms were related.
And you are right about it being an evolving field. I no longer get angry that they don't understand. Instead I try to do my homework and find a doctor who understands. I am hoping the 2 new docs I am seeing will be helpful. I also now bring articles with me to educate them. Because I now know so much they aren't sarcastic like they used to be.
Julie, do you have symptoms of POTS or autonomic disorder? There is overlap in mast cell symptoms and POTS. I seem to have the hyperadrenergic type that involved high blood pressure, which is a rare presentation.
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,
Thanks for the "thumbs up" on the post. I was suffering from a bit of insomnia on Friday so I figured I would make good use of the time!
I'm doing the 24 hour methylhistamine this week as well as the C-kit D816V serum test. Honestly, I don't expect any of the tests to come back positive even though I'm symptomatic. My hunch is I'm going to fall into the MCAD category with the positive gut biopsy, but negative in all other tests.
I don't have symptoms of POTS or an autonomic disorder. With all the seemingly disconnected symptoms I've experienced, I do wonder if there is something else going on with my health. But, I've had a lot of tests and so far nothing else has shown up. I tend to think it is all mast cell related and we just need to connect the dots.
Keep us posted on how things go with your new physicians. I hope you find them helpful!
Be well,
Julie
Thanks for the "thumbs up" on the post. I was suffering from a bit of insomnia on Friday so I figured I would make good use of the time!
I'm doing the 24 hour methylhistamine this week as well as the C-kit D816V serum test. Honestly, I don't expect any of the tests to come back positive even though I'm symptomatic. My hunch is I'm going to fall into the MCAD category with the positive gut biopsy, but negative in all other tests.
I don't have symptoms of POTS or an autonomic disorder. With all the seemingly disconnected symptoms I've experienced, I do wonder if there is something else going on with my health. But, I've had a lot of tests and so far nothing else has shown up. I tend to think it is all mast cell related and we just need to connect the dots.
Keep us posted on how things go with your new physicians. I hope you find them helpful!
Be well,
Julie
Julie,
I wanted to let you know I also found your post extremely helpful (sitting over here in the peanut gallery on mast cells, but very grateful for both you & Mary Beth and your contributions in this confusing arena). I am not sure what testing I will pursue (other than MRT, psyched). But this whole thread motivated me to sit down and start a note for myself of all the various health things on both sides of my family, and which might be related to mast cells and/or gluten sensitivity. That doesn't tell me what I need to do for my own health, but it was eye-opening. (And that's why I'm focusing on MRT as my primary next step, because at least with that test result I will know - with help, of course - how to proceed...)
Anyway, that has helped me to improve my day-to-day note-taking on food/symptoms, too, and whatever else happens, I'm sure this will be of help in figuring things out.
I hope your testing this week is illuminating (even, as you say, the results you expect to be negative).
All my best,
Sara
I wanted to let you know I also found your post extremely helpful (sitting over here in the peanut gallery on mast cells, but very grateful for both you & Mary Beth and your contributions in this confusing arena). I am not sure what testing I will pursue (other than MRT, psyched). But this whole thread motivated me to sit down and start a note for myself of all the various health things on both sides of my family, and which might be related to mast cells and/or gluten sensitivity. That doesn't tell me what I need to do for my own health, but it was eye-opening. (And that's why I'm focusing on MRT as my primary next step, because at least with that test result I will know - with help, of course - how to proceed...)
Anyway, that has helped me to improve my day-to-day note-taking on food/symptoms, too, and whatever else happens, I'm sure this will be of help in figuring things out.
I hope your testing this week is illuminating (even, as you say, the results you expect to be negative).
All my best,
Sara
S-Adenosyl Methionine (Sam-e) instead of Anti-histamine
Hi everyone. I just thought I'd let other histamine sufferers know that I've found Sam-e to work much better than Anti-histamine. Whereas anti-histamine masks the symptoms by "blocking" the histamine the Sam-e helps your liver metabolise it. I credit Sam-e with keeping me at work for the last 18 months as I would be otherwise be bed ridden with chronic fatigue, migraines and debilitating mental symptoms. If you have artitis or mood problems it has also been clinically proven to help with these.
Sam-e is a part of the methylation cycle and your body would ordinarily produce enough from food if it didn't have to deal with the onslaught of what we are all dealing with. It is 'natural' as it simply provides the liver with more 'fuel' to metabolise the histamine.
This diagram shows how Sam-e (S-Adenosyl Methionine) works.
http://www.ajcn.org/content/85/5/1185/F2.large.jpg
The cheapest place I have found to get it is iHerb. Note, you must take it with Vitamin B to work.
Sam-e
http://www.iherb.com/Doctor-s-Best-Doub ... 34892?at=0
Thorne MethylGuard (B group vitamins that help methylation - best taken with a B complex)
http://www.iherb.com/Thorne-Research-Me ... 33646?at=0
Sam-e is a part of the methylation cycle and your body would ordinarily produce enough from food if it didn't have to deal with the onslaught of what we are all dealing with. It is 'natural' as it simply provides the liver with more 'fuel' to metabolise the histamine.
This diagram shows how Sam-e (S-Adenosyl Methionine) works.
http://www.ajcn.org/content/85/5/1185/F2.large.jpg
The cheapest place I have found to get it is iHerb. Note, you must take it with Vitamin B to work.
Sam-e
http://www.iherb.com/Doctor-s-Best-Doub ... 34892?at=0
Thorne MethylGuard (B group vitamins that help methylation - best taken with a B complex)
http://www.iherb.com/Thorne-Research-Me ... 33646?at=0
Tracy
http://thepowerofpoo.blogspot.com/
"I have not failed. I've just found 10,000 ways that won't work." Thomas A. Edison
http://thepowerofpoo.blogspot.com/
"I have not failed. I've just found 10,000 ways that won't work." Thomas A. Edison
Tracy,
I'm glad you found something to alleviate your symptoms. Do you have a mast cell disorder or do you just suspect high histamine levels based on symptoms you have had?
I do have a mast cell problem and therefore go into flares when my histamine levels are high. I share some of your symptoms but actually experience a few more that have actually resulted in trips to the ER. High histamine levels can be serious and one would absolutely need antihistamine and possibly epinephrine to stop the effects. I am not disputing the effectiveness of SAMe for you, but I think it is important to not mislead people into thinking that it would be more effective than these drugs in certain situations.
Another option to help metabolize DAO is Histame, which contains diamine oxidase, the enzyme needed to break down histamine in the gut. But Histame is only providing DAO, not HMNT, so depending on the nature of one's histamine problems, Histame may only provide partial relief.
Best wishes for good health,
Mary Beth
I'm glad you found something to alleviate your symptoms. Do you have a mast cell disorder or do you just suspect high histamine levels based on symptoms you have had?
I do have a mast cell problem and therefore go into flares when my histamine levels are high. I share some of your symptoms but actually experience a few more that have actually resulted in trips to the ER. High histamine levels can be serious and one would absolutely need antihistamine and possibly epinephrine to stop the effects. I am not disputing the effectiveness of SAMe for you, but I think it is important to not mislead people into thinking that it would be more effective than these drugs in certain situations.
Another option to help metabolize DAO is Histame, which contains diamine oxidase, the enzyme needed to break down histamine in the gut. But Histame is only providing DAO, not HMNT, so depending on the nature of one's histamine problems, Histame may only provide partial relief.
Best wishes for good health,
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 am going to read up more on Sam-e -
but as a followup to a previous thread, I wanted to mention that my experience with quercetin, so far, has been positive. I am taking less than the bottle recommends, but I think it is helping (and it's probably more quercetin than I would get from eating quercetin-rich foods, at least most days).
Mary Beth, I can't say this is a definitely helpful protocol, and it's possible that the longer I go without eating my worst food intolerances, the less my mast cell issues are a first-order factor in my symptoms. I do carry Histame in my purse, and use it typically when eating out (as at home I am pretty confident about our kitchen choices and practices), but will use it also when eating a 'novel' food, or one I know to be high in histamine, and not proven to be reliably safe for me.
Tracy - thanks for the Sam-e thoughts. I do carry antihistamines as well as Histame with me, plus Pepto-Bismol, and last night as I began my Yom Kippur fast, I thought - WOW, do I take a Benadryl right now? - for low-grade flushing and a "micro-hive" (luckily my choice to wait worked out OK). I think that issue was topical - I stayed at a friend's home, and think it was towels laundered with softener, or dried with drier sheets, which we don't use, that caused a minor, temporary onset of symptoms which luckily settled down.
I'll be glad to have another potential weapon in my arsenal,
Sara
but as a followup to a previous thread, I wanted to mention that my experience with quercetin, so far, has been positive. I am taking less than the bottle recommends, but I think it is helping (and it's probably more quercetin than I would get from eating quercetin-rich foods, at least most days).
Mary Beth, I can't say this is a definitely helpful protocol, and it's possible that the longer I go without eating my worst food intolerances, the less my mast cell issues are a first-order factor in my symptoms. I do carry Histame in my purse, and use it typically when eating out (as at home I am pretty confident about our kitchen choices and practices), but will use it also when eating a 'novel' food, or one I know to be high in histamine, and not proven to be reliably safe for me.
Tracy - thanks for the Sam-e thoughts. I do carry antihistamines as well as Histame with me, plus Pepto-Bismol, and last night as I began my Yom Kippur fast, I thought - WOW, do I take a Benadryl right now? - for low-grade flushing and a "micro-hive" (luckily my choice to wait worked out OK). I think that issue was topical - I stayed at a friend's home, and think it was towels laundered with softener, or dried with drier sheets, which we don't use, that caused a minor, temporary onset of symptoms which luckily settled down.
I'll be glad to have another potential weapon in my arsenal,
Sara
Thanks for picking me up on this Mary Beth, I should have been clearer. I take Sam-e preventatively daily to control my histamine levels. If I need a quick fix I still hit the anti-histamine.
In answer to your question - I have no idea what is wrong with me, so if anyone has any ideas please let me know! Until stumbling on this forum I thought my food intolerances and histamine symptoms were caused by bacterial imbalance in my gut as per fecal ecology tests, following many rounds of anti-biotics over many years. However the condition worsened when my gut dissolved to water 2 months ago, and since reading this forum I'm thinking that colitis and mast cells are contributing factors in both this recent development, the histamine problem, the bacterial imbalance and 20 years of food intolerances.
I have never been so sick that I need to go to emergency or carry an epi pen. Having said that, I have taken increasingly large doses of Sam-e preventatively for the last 6 months and am actually quiet frightened to go off it as a small reduction in dosage or exposure to amines throws me straight a migraine and the need to sleep for 12 hours straight.
Prior to the onset of what I call 'Waterfall D' I had two colonoscopies. Both were 'pristine' but I don't think either did the stain test for mast cells. I'm booked for another on 17 October to find out what is causing the Waterfall D. After reading this site I'm going to call the GI's office tomorrow and make sure he will do the mast cell test. It's so hard to find a doctor who doesn't take it personally that you have been researching your condition.
Gastrocrom/Nalcrom helped for 36 hours then stopped. Histame doesn't help and Quercitan irritated my gut. I haven't tried Pepto-Bismol as I am salicylate intolerant. The only things that have helped reduce the waterfall are sticking to rice and potatoes (with a bit of ghee - have just changed over from butter) drinking less water and taking psyllium to absorb the water. Without the psyllium a meal passes through within 6 hours. The psyllium extends this to 12 hours. Everything comes out pale green, so at least I know my bile production is fine!
In answer to your question - I have no idea what is wrong with me, so if anyone has any ideas please let me know! Until stumbling on this forum I thought my food intolerances and histamine symptoms were caused by bacterial imbalance in my gut as per fecal ecology tests, following many rounds of anti-biotics over many years. However the condition worsened when my gut dissolved to water 2 months ago, and since reading this forum I'm thinking that colitis and mast cells are contributing factors in both this recent development, the histamine problem, the bacterial imbalance and 20 years of food intolerances.
I have never been so sick that I need to go to emergency or carry an epi pen. Having said that, I have taken increasingly large doses of Sam-e preventatively for the last 6 months and am actually quiet frightened to go off it as a small reduction in dosage or exposure to amines throws me straight a migraine and the need to sleep for 12 hours straight.
Prior to the onset of what I call 'Waterfall D' I had two colonoscopies. Both were 'pristine' but I don't think either did the stain test for mast cells. I'm booked for another on 17 October to find out what is causing the Waterfall D. After reading this site I'm going to call the GI's office tomorrow and make sure he will do the mast cell test. It's so hard to find a doctor who doesn't take it personally that you have been researching your condition.
Gastrocrom/Nalcrom helped for 36 hours then stopped. Histame doesn't help and Quercitan irritated my gut. I haven't tried Pepto-Bismol as I am salicylate intolerant. The only things that have helped reduce the waterfall are sticking to rice and potatoes (with a bit of ghee - have just changed over from butter) drinking less water and taking psyllium to absorb the water. Without the psyllium a meal passes through within 6 hours. The psyllium extends this to 12 hours. Everything comes out pale green, so at least I know my bile production is fine!
Tracy
http://thepowerofpoo.blogspot.com/
"I have not failed. I've just found 10,000 ways that won't work." Thomas A. Edison
http://thepowerofpoo.blogspot.com/
"I have not failed. I've just found 10,000 ways that won't work." Thomas A. Edison
Tracy,
I understand your fear of getting off the sam-e. Anything that helps control these symptoms is a good thing.
In addition to your colonoscopy you could have some other tests, like serum tryptase, and 24 hour urine n-methylhistamine. I beleive dysbiosis is a plyaer in the histamine picture and I actually feel better when I take a probiotic. If any of your test come back positive then you may need to be on a cocktail of things to prevent reactions. You may need a variety of antihistamines and maybe even a mast cell stabilizer.
I am also sensitive to salicylates and amines and know what you mean about the migraines. When I am not in a flare I can eat a little variety but when I am in a flare I need to eat very plainly and really adhere to the low histamine diet strictly. Have you tried other diet restrictions, like gluten free?
I look forward to following your progress.
Hugs,
Mary Beth
I understand your fear of getting off the sam-e. Anything that helps control these symptoms is a good thing.
In addition to your colonoscopy you could have some other tests, like serum tryptase, and 24 hour urine n-methylhistamine. I beleive dysbiosis is a plyaer in the histamine picture and I actually feel better when I take a probiotic. If any of your test come back positive then you may need to be on a cocktail of things to prevent reactions. You may need a variety of antihistamines and maybe even a mast cell stabilizer.
I am also sensitive to salicylates and amines and know what you mean about the migraines. When I am not in a flare I can eat a little variety but when I am in a flare I need to eat very plainly and really adhere to the low histamine diet strictly. Have you tried other diet restrictions, like gluten free?
I look forward to following your progress.
Hugs,
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
Thank you for your response Mary Beth.
Yes, I have been very conscientious with diet. I have been gluten-free for 20 years, plus avoiding yeast and sugar and relied heavily on pro-biotics. These were just things I worked out myself and even though I battled various health conditions (yeast infections, UTIs, Fibromyalgia) I still had a functional life.
However over the last two years as the dysbiosis has worsened the intolerances have escalated to the point where I am now surviving on rice & potatoes. I have a pantry full of supplements I can't tolerate. For two years I have not even been able to tolerate probiotics. Even something like Omega 3 oils (fish or vegetarian) which are supposed to be critical for inflammatory conditions, escalates the histamine problem. Q Enzyme 10, which is fermented so contains amines, will do it too. You can see why I frustrate the doctors and naturopaths!
I have had a blood histamine test done which said I had no problem, however I was taking bucketloads of Sam-e and anti-histamine at the time so of course it wouldn't show anything. I'm not willing to go off the Sam-e just to prove to the doctors that I have a problem, unless they are willing to hospitalise me in case I go into anaphalectic shock.
Did you check out that diagram showing how Sam-e metabolises histamine? I found it through my research and thought I'd give it a go and it worked. It surprises me that Sam-e is a wonder supplement used for many conditions but apparently no one but me uses it to control histamine. In fact until I found all of you, I had never found anyone on an internet forum with gut-related histamine problems.
As for trying mast cell stabilisers I have already tried Nalcrom (which is the same as Gastrocom in the US). It held all my food in for 36 hours then stopped working but I am perservering with it. Is there another mast cell stabiliser I should try? I won't be able to tolerate the 5 ASAs as I am salycilate intolerant. I think all that is left is Entocort and hope they will give it to me, but I can't see how it can resolve the condition when I am already on such a restrictive diet. There are no other foods to give up!
Yes, I have been very conscientious with diet. I have been gluten-free for 20 years, plus avoiding yeast and sugar and relied heavily on pro-biotics. These were just things I worked out myself and even though I battled various health conditions (yeast infections, UTIs, Fibromyalgia) I still had a functional life.
However over the last two years as the dysbiosis has worsened the intolerances have escalated to the point where I am now surviving on rice & potatoes. I have a pantry full of supplements I can't tolerate. For two years I have not even been able to tolerate probiotics. Even something like Omega 3 oils (fish or vegetarian) which are supposed to be critical for inflammatory conditions, escalates the histamine problem. Q Enzyme 10, which is fermented so contains amines, will do it too. You can see why I frustrate the doctors and naturopaths!
I have had a blood histamine test done which said I had no problem, however I was taking bucketloads of Sam-e and anti-histamine at the time so of course it wouldn't show anything. I'm not willing to go off the Sam-e just to prove to the doctors that I have a problem, unless they are willing to hospitalise me in case I go into anaphalectic shock.
Did you check out that diagram showing how Sam-e metabolises histamine? I found it through my research and thought I'd give it a go and it worked. It surprises me that Sam-e is a wonder supplement used for many conditions but apparently no one but me uses it to control histamine. In fact until I found all of you, I had never found anyone on an internet forum with gut-related histamine problems.
As for trying mast cell stabilisers I have already tried Nalcrom (which is the same as Gastrocom in the US). It held all my food in for 36 hours then stopped working but I am perservering with it. Is there another mast cell stabiliser I should try? I won't be able to tolerate the 5 ASAs as I am salycilate intolerant. I think all that is left is Entocort and hope they will give it to me, but I can't see how it can resolve the condition when I am already on such a restrictive diet. There are no other foods to give up!
Tracy
http://thepowerofpoo.blogspot.com/
"I have not failed. I've just found 10,000 ways that won't work." Thomas A. Edison
http://thepowerofpoo.blogspot.com/
"I have not failed. I've just found 10,000 ways that won't work." Thomas A. Edison
Histame vs Sam-e
By the way, if you look at the diagram on the metabolism of histamine there are two pathways. One is throught DAO (which is the ingredient in Histame) and the other is through Sam-e (s-adenosylmethionine).
http://www.ajcn.org/content/85/5/1185/F2.large.jpg
http://www.ajcn.org/content/85/5/1185/F2.large.jpg
Tracy,
I'm not claiming that this will work for you, since I'm not aware of any research in which the concept was tested for mast cell issues, but have you ever considered helminth treatment? It certainly works effectively to suppress most autoimmune issues, (including IBDs), and for someone with such major immune system problems, there aren't many options left.
As far as I'm aware, none of the medical establishments in developed countries condone helminth treatments, but it's possible to self-treat, since there are sources where appropriate helminth ova can be purchased, (without a prescription).
Again, I'm not recommending this, since I can't dispense medical advice - I'm just pointing out that it might be a viable option in such an extreme case, where conventional treatments don't bring relief.
Tex
I'm not claiming that this will work for you, since I'm not aware of any research in which the concept was tested for mast cell issues, but have you ever considered helminth treatment? It certainly works effectively to suppress most autoimmune issues, (including IBDs), and for someone with such major immune system problems, there aren't many options left.
As far as I'm aware, none of the medical establishments in developed countries condone helminth treatments, but it's possible to self-treat, since there are sources where appropriate helminth ova can be purchased, (without a prescription).
Again, I'm not recommending this, since I can't dispense medical advice - I'm just pointing out that it might be a viable option in such an extreme case, where conventional treatments don't bring relief.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tracy,
You could have all normal test results and still have mast cell issues. It's really hard to diagnose sometimes. Your symptoms certainly sound like MCAD to me though.
Sorry you are struggling so much with food sensitivities. I know your quality of life is really impacted by having to be so restrictive. The other mast cell stabilizer is called ketotifen - don't know much about it except that it seems to be tolerated better than the others. Entocort might be worth trying. I've never used any meds other than antihistamines.
I did look at the chart. I will have to investigate a bit more. I'm always uber-cautious about taking anything new.
Mary Beth
You could have all normal test results and still have mast cell issues. It's really hard to diagnose sometimes. Your symptoms certainly sound like MCAD to me though.
Sorry you are struggling so much with food sensitivities. I know your quality of life is really impacted by having to be so restrictive. The other mast cell stabilizer is called ketotifen - don't know much about it except that it seems to be tolerated better than the others. Entocort might be worth trying. I've never used any meds other than antihistamines.
I did look at the chart. I will have to investigate a bit more. I'm always uber-cautious about taking anything new.
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
Hi Tracy,
I share many of the same mast cell issues as Mary Beth, although our symptom presentation is a bit different. Between the two of us I hate to think how many physicians we've gone to trying to get an accurate diagnosis. So, if you suspect mast cells are potentially to blame for some of your health issues, hang in there! Doctors just don't know this stuff, so it can be an uphill battle.
I feel like the "poster child" for insisting that colonoscopies include a biopsy with the special staining for mast cells. (Assuming the patient is experiencing GI symptoms.) If my GI doctor hadn't done this, I'm sure I would still be without an accurate diagnosis. (Mastocytic enterocolitis)
I would suggest you take a copy of the article that is sited at the beginning of this thread to your gastro. My GI doc co-authored the article and his contact info is included at the beginning of the article. He is very interested in the role of mast cells and gastro problems. I'm sure he would be glad to correspond with your doctor if that would be helpful. Keep in mind that it is critically important that the staining be done properly or your results will be questionable. I believe the article addresses this issue as well.
Good luck with your colonoscopy. Keep us posted on your progress!
Mary Beth - Did you get any helpful information from your recent test results with the new allergist? Any results shedding more light on the mast cell issues? Quick update on my end...Dr. Afrin reviewed all my records and emailed me his report. His opening statement in the report was "In my opinion, you're classic for MCAS, and I don't know of any other human disease which can better explain the full range of findings in you." Brought tears to my eyes! Hopefully on the right track now!
Good health to all,
Julie
I share many of the same mast cell issues as Mary Beth, although our symptom presentation is a bit different. Between the two of us I hate to think how many physicians we've gone to trying to get an accurate diagnosis. So, if you suspect mast cells are potentially to blame for some of your health issues, hang in there! Doctors just don't know this stuff, so it can be an uphill battle.
I feel like the "poster child" for insisting that colonoscopies include a biopsy with the special staining for mast cells. (Assuming the patient is experiencing GI symptoms.) If my GI doctor hadn't done this, I'm sure I would still be without an accurate diagnosis. (Mastocytic enterocolitis)
I would suggest you take a copy of the article that is sited at the beginning of this thread to your gastro. My GI doc co-authored the article and his contact info is included at the beginning of the article. He is very interested in the role of mast cells and gastro problems. I'm sure he would be glad to correspond with your doctor if that would be helpful. Keep in mind that it is critically important that the staining be done properly or your results will be questionable. I believe the article addresses this issue as well.
Good luck with your colonoscopy. Keep us posted on your progress!
Mary Beth - Did you get any helpful information from your recent test results with the new allergist? Any results shedding more light on the mast cell issues? Quick update on my end...Dr. Afrin reviewed all my records and emailed me his report. His opening statement in the report was "In my opinion, you're classic for MCAS, and I don't know of any other human disease which can better explain the full range of findings in you." Brought tears to my eyes! Hopefully on the right track now!
Good health to all,
Julie
Julie,
So glad to hear you found a doctor who understands - it makes all the difference in the world. My allergist ran many tests and they were all normal but I wasn't flaring. He wants to see me in a flare. The same is true for the cardiologist I saw. He was very interested in learning about MCAD and POTS. During me next flare I will have to get a tilt table test to confirm POTS . . . not looking forward to that. Right now I am feeling good and BP is normal. I am going through a stressful time with my business (we have to move our office unexpectedly do to the sale of our building) and so far so good, although I have been very itchy, but that happens every fall.
Are you starting on some new meds? How have your symptoms been?
Mary Beth
So glad to hear you found a doctor who understands - it makes all the difference in the world. My allergist ran many tests and they were all normal but I wasn't flaring. He wants to see me in a flare. The same is true for the cardiologist I saw. He was very interested in learning about MCAD and POTS. During me next flare I will have to get a tilt table test to confirm POTS . . . not looking forward to that. Right now I am feeling good and BP is normal. I am going through a stressful time with my business (we have to move our office unexpectedly do to the sale of our building) and so far so good, although I have been very itchy, but that happens every fall.
Are you starting on some new meds? How have your symptoms been?
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