I’ve read most or all of the histamine and mast cell posts here (and elsewhere), but am still confused about distinguishing collagenous colitis symptoms from histamine and/or mast cell issues. I began a bland, gut-healing diet, (following EnteroLab and MC Forum recommendations), almost 11 months ago and think I may actually be in remission. Just one perfectly normal BM daily, in the AM, and no cramps, pain or gurgling in over a month, despite an ever-expanding (but still cautiously limited) diet.
Problem is that histamine issues seem to have worsened again after I recently stopped taking anti-histamines for a few weeks. Although I reintroduced them over a month ago, itching, sneezing, runny nose, gritty, twitching eyes, headaches, numbness, joint and muscle pain, etc. seem worse. Muscle cramps have recurred even at 800 mg Dr’s Best Glycinate and Mag oil 2X daily. During 2017 I’d gradually reduced mag to 600 daily by December, after taking 1200-1400 for several years. However before year’s end the cramps returned so I’m now back up to 1000mg. I’ve also been taking 10,000 IU of D3 and have recently reintroduced a few other vitamins and supplements.
However none of the digestive reactions that I previously attributed to eating high histamine meals a few times—pain, cramping and D—have recurred. So does this mean that my gut is healed, but not the other areas affected by histamine? I didn’t start taking anti-histamines regularly until last year, after reading about them here. My diet is low histamine again, after a brief (unsuccessful) holiday experiment with chocolate and avocados.
My 5/2016 colonoscopy slides were just re-examined and found to contain an average of 21 Mast Cells, where >15 is considered excessive and a “major” criterion for diagnosing Systemic Mastocytosis. Apparently SM must be ruled out in order to diagnose histamine intolerance, MC Activation Disorder or Mastocytic Enterocolitis.
"WHO 2008 diagnostic criteria for systemic mastocytosis
Diagnosis of SM made by either
(1) major criterion + any one or more minor criteria;
or
(2) any three minor criteria.
Major Criterion:
Multifocal, dense aggregates of MCs (15 or more) in sections of bone marrow or other extracutaneous tissues and confirmed by tryptase immunohistochemistry or other special stains
Minor criteria:
1. Atypical or spindled appearance of at least 25% of the MCs in the diagnostic biopsy
2. Expression of CD2 and/or CD25 by MCs in marrow, blood, or extracutaneous organs
3. KIT codon 816 mutation in marrow, blood or extracutaneous organs
4. Persistent elevation of serum total tryptase > 20 ng/mL
So since my tryptase is NOT elevated, it looks like the next step would be to either rule out the first 3 minor criteria, or test positive to at least one of them?
Has anyone been diagnosed with any of the mast cell disorders, or have any experience with these tests or with recommended Meds? I haven’t discussed any of this with my PCP yet, as I just found my pathology “recount” online. Does this seem like a logical way to proceed? Is there a preferred order for requesting the tests or does pursuing them seem like overkill? My PCP has been cooperative so far, so I’d hate to alienate her.
Also, in view of the above, does it seem like increasing joint and muscle pain—some chronic (knees, ankles, neck, shoulders, wrists, back & waist ) and some new (“trigger thumb” in both hands), is more likely to be diet or mast cell related—or neither?
Any suggestions appreciated.
Warm regards to all,
Teri
Has anyone been DX’d with a mast cell disorder?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Has anyone been DX’d with a mast cell disorder?
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
There are a few key things to managing histamine/mast cell issueshistamine issues seem to have worsened again after I recently stopped taking anti-histamines for a few weeks. Although I reintroduced them over a month ago, itching, sneezing, runny nose, gritty, twitching eyes, headaches, numbness, joint and muscle pain, etc. seem worse. Muscle cramps have recurred even at 800 mg Dr’s Best Glycinate and Mag oil 2X daily. During 2017 I’d gradually reduced mag to 600 daily by December, after taking 1200-1400 for several years. However before year’s end the cramps returned so I’m now back up to 1000mg. I’ve also been taking 10,000 IU of D3 and have recently reintroduced a few other vitamins and supplements.
- reducing histamine toxic load on the body - low histamine eating plan, low histamine lifestyle (avoid as many histamine triggers as possible), this applies at home, in our workplace, what products we use to clean the bathroom, is there mould in the house etc etc
- right supps and right doseages. Magnesium and Vit D3 alone wont resolve histamine issues - the body needs B6 - and other active B's. This is mentioned in quite a few of the mast cell histamine posts.
also my guess is you are not absorbing the drs best glycinate so you may not be getting the full 800mg that you think you are. this issue happened to vanessa and others here and only when they swapped across to the Dr Dean ReMag product did they see improvement with mag deficiency type issues
- also depending on what other health issues you have, what medications you are taking, some of the foods you are eating, this will also vary the magnesium amount you need each day.
- time - it took me over 6 months to start to resolve magnesium deficiency / B6 deficiency - and a good 12 months before all the histamine/allergy symptoms went away.
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Vanessa's post about remag etc
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22542
on the top of page 2 of Erica's post she discusses B6 and excess histamine
http://www.perskyfarms.com/phpBB2/viewt ... 6&start=15
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22542
on the top of page 2 of Erica's post she discusses B6 and excess histamine
http://www.perskyfarms.com/phpBB2/viewt ... 6&start=15
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Teri,
Here are a few old posts that you might find interesting if you haven't already read them. Post number 9 in the second link lists several members who were having major mast cell issues at the time, but most of them haven't posted in a number of years.
Paging MAST CELL experts - I think this is my smoking gun!!
Dr. Hamilton-Bringham
A few thoughts on MC and MCAD
Back to the mast cell theory! Update
Newly Diagnosed with Mastocytic Entercolitis
Unless you go to Boston (Brigham and Women's Hospital), it's unlikely that you will find a doctor who will be able to help you with this, but I could be wrong.
Tex
Here are a few old posts that you might find interesting if you haven't already read them. Post number 9 in the second link lists several members who were having major mast cell issues at the time, but most of them haven't posted in a number of years.
Paging MAST CELL experts - I think this is my smoking gun!!
Dr. Hamilton-Bringham
A few thoughts on MC and MCAD
Back to the mast cell theory! Update
Newly Diagnosed with Mastocytic Entercolitis
Unless you go to Boston (Brigham and Women's Hospital), it's unlikely that you will find a doctor who will be able to help you with this, but I could be wrong.
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.
Thanks Gabes. I tried Remax early on, but couldn’t keep it down. I have an exaggerated gag reflex, react to many odors, have to hold my nose to get certain supplements down, etc. Per ExaTest results I started taking 1200 mgs of the more expensive brands of glycinate in 10/2014 and switched to Doctor’s Best in 2015—taking varying dosages since. (I also take Synthroid, Rx Potassium since 2010, Tamoxifen since 1/16 and Reclast, once so far). Adding the mag oil allowed me to reduce my glycinate dosage to 800 mg and this combination seemed to be effective for quite some time. Seemed like muscle cramps were pretty much history when I posted my “success story” about 2 months ago.
So I’m wondering—In December I finished a bottle of Life-Flo Brine and started a Swanson’s. Seems like the muscle cramps recurred a few weeks later. Just wondering if anyone else uses the Swanson product, or has noted different results (other than the variations in burning, itching etc.) when switching between brands. I switched back to Life-Flo about a week ago.
I didn’t think malabsorption was currently a problem, since my digestion has seemed so good for the last few months and I’ve regained the 20 lbs I’d lost!! Some of my recent lab results have also begun to improve.
I’ve also been taking 50 mg of P-5-P and varying amounts of anti-histamines, and Thorne Methylated B vitamins since spring, Methyl Guard beginning in the fall and Methyl Guard plus since December. Currently I’m taking 1 MethylGuard, 1 MethylGuard Plus, 10,000 IU of D3, an additional 50 mg of P-5-P, and recently re-added selenium, B1, zinc, copper and a few herbs.
I’m not sure that all the B’s are a good idea though, since my B-12 increased from 1,500 units in November, to 2,000 units when retested in December, after having stopped all B vitamins for 11 days. I feel less fatigued and “clearer,” however my husband says I’m just wired. Don’t notice other changes and really don’t know what to make of the elevated B-12. I haven’t yet discussed it with my PCP.
I try to be careful about body care & cleaning products, etc. but have noticed additional triggers in my house, that didn’t seem to bother me in the past: some of my houseplants being the most obvious. I’ve repotted the “suspects,” but may have to give them all away. They’re like pets though—I’ve had some of them for decades.
I started a low histamine diet when I began the EnteroLab diet last February, and strayed only a few times when eating seafood out. Each time I had fairly sustained digestive reactions in addition to the classic histamine issues. More recently I tried chocolate and avocados for a week during the holidays which, resulted in my only abdominal cramps (but no D, etc.) since fall. So I’m puzzled about digestive symptoms vs everything else. Can’t figure out why digestive issues continued to improve, while “everything else” particularly itching, got much so worse without antihistamines, and remain worse now, weeks after re-introducing them.
Of course I’m thrilled about my improving energy and stamina and to be rid of the digestive symptoms relatively quickly (even if this is only temporary). So many of the stories shared here have been so much more complex, challenging and intractable than mine. I feel like I’ve gotten off really easily.
Knowing now, that my mast cell numbers are elevated would seem to at least confirm my suspicions about histamines. Its all still very puzzling
but hopefully it will make more sense one day.
Teri
So I’m wondering—In December I finished a bottle of Life-Flo Brine and started a Swanson’s. Seems like the muscle cramps recurred a few weeks later. Just wondering if anyone else uses the Swanson product, or has noted different results (other than the variations in burning, itching etc.) when switching between brands. I switched back to Life-Flo about a week ago.
I didn’t think malabsorption was currently a problem, since my digestion has seemed so good for the last few months and I’ve regained the 20 lbs I’d lost!! Some of my recent lab results have also begun to improve.
I’ve also been taking 50 mg of P-5-P and varying amounts of anti-histamines, and Thorne Methylated B vitamins since spring, Methyl Guard beginning in the fall and Methyl Guard plus since December. Currently I’m taking 1 MethylGuard, 1 MethylGuard Plus, 10,000 IU of D3, an additional 50 mg of P-5-P, and recently re-added selenium, B1, zinc, copper and a few herbs.
I’m not sure that all the B’s are a good idea though, since my B-12 increased from 1,500 units in November, to 2,000 units when retested in December, after having stopped all B vitamins for 11 days. I feel less fatigued and “clearer,” however my husband says I’m just wired. Don’t notice other changes and really don’t know what to make of the elevated B-12. I haven’t yet discussed it with my PCP.
I try to be careful about body care & cleaning products, etc. but have noticed additional triggers in my house, that didn’t seem to bother me in the past: some of my houseplants being the most obvious. I’ve repotted the “suspects,” but may have to give them all away. They’re like pets though—I’ve had some of them for decades.
I started a low histamine diet when I began the EnteroLab diet last February, and strayed only a few times when eating seafood out. Each time I had fairly sustained digestive reactions in addition to the classic histamine issues. More recently I tried chocolate and avocados for a week during the holidays which, resulted in my only abdominal cramps (but no D, etc.) since fall. So I’m puzzled about digestive symptoms vs everything else. Can’t figure out why digestive issues continued to improve, while “everything else” particularly itching, got much so worse without antihistamines, and remain worse now, weeks after re-introducing them.
Of course I’m thrilled about my improving energy and stamina and to be rid of the digestive symptoms relatively quickly (even if this is only temporary). So many of the stories shared here have been so much more complex, challenging and intractable than mine. I feel like I’ve gotten off really easily.
Knowing now, that my mast cell numbers are elevated would seem to at least confirm my suspicions about histamines. Its all still very puzzling
but hopefully it will make more sense one day.
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Thanks Tex! I hadn’t yet seen some of these posts, and others I re-read. Definitely helpful! I’ve come across a lot of recent research and articles on Mast Cell Disorders, including a new one written by professors here at OHSU in Portland and Mayo Clinic in Scottsdale, AZ. published in this month’s British Journal of Haematology:
http://onlinelibrary.wiley.com/doi/10.1 ... 14967/full
“How we diagnose and treat systemic mastocytosis in adults”
Br J Haematol. 2018 Jan;180(1):11-23. doi: 10.1111/bjh.14967. Epub 2017 Oct 19.
I’ve only seen my current PCP a few times (last one relocated) and discussed histamine and mast cells briefly with her. Although she seemed unconvinced, she humored me. I subsequently sent her the following link in an e-mail:
http://www.brighamandwomens.org/Departm ... tment.aspx
which discusses recommended tests for diagnosing MCAS. She ordered those that were readily available and requested mast cell counts on prior biopsies. If the Mast Cell count had been normal I’d probably have dropped the whole thing, but will now request that she order the tests needed to rule out or establish a specific diagnosis. Since these are now described in many “peer reviewed” studies and articles—like the one above, I think she might agree. I’ll let you know.
Teri
http://onlinelibrary.wiley.com/doi/10.1 ... 14967/full
“How we diagnose and treat systemic mastocytosis in adults”
Br J Haematol. 2018 Jan;180(1):11-23. doi: 10.1111/bjh.14967. Epub 2017 Oct 19.
I’ve only seen my current PCP a few times (last one relocated) and discussed histamine and mast cells briefly with her. Although she seemed unconvinced, she humored me. I subsequently sent her the following link in an e-mail:
http://www.brighamandwomens.org/Departm ... tment.aspx
which discusses recommended tests for diagnosing MCAS. She ordered those that were readily available and requested mast cell counts on prior biopsies. If the Mast Cell count had been normal I’d probably have dropped the whole thing, but will now request that she order the tests needed to rule out or establish a specific diagnosis. Since these are now described in many “peer reviewed” studies and articles—like the one above, I think she might agree. I’ll let you know.
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Tex,
I noticed that histamine and mast cell issues are mentioned here fairly often, so was surprised to learn that so few of us have been diagnosed or tested, and possibly none in the last 5 years or so. During that time, proposed diagnostic criteria for a number of Mast Cell Disorders have been adopted, there’s been an explosion of new interest and research, and a growing number of practitioners getting involved in treatment. So I don’t think its that outlandish to hope that a non-hostile PCP or other practitioner could at least order the relevant tests. They might not know how to interpret the results, but at least its a start.
For anyone considering pursuing this, its pretty easy to request re-examination of biopsy slides using the correct stains, so this might be a good starting point. Since this “recount” confirmed that my Mast Cell #’s are elevated, I’ll now ask my PCP to order the additional diagnostic labs, as outlined above in the WHO criteria.
I’ve been doing more reading at: http://tmsforacure.org which has a very well organized website with a lot of current info, research, etc., but
the http://mastcelldisorders.wallack.us/yabb/YaBB.pl forum seemed to have very few postings in recent years. Perhaps they relocated to Facebook?
There are also a few blogs with lots of info. I haven’t looked into them very carefully, but immediately noticed some interesting stuff on this one:
http://www.mastattack.org/2017/04/masta ... es-part-2/
This is another particularly good, well-organized research article on diagnosing mast
cell disorders: http://onlinelibrary.wiley.com/doi/10.1 ... 24553/full
“Systemic mastocytosis in adults: 2017 update on diagnosis, risk stratification and management.”— American Journal of Hematology October 2016
If anyone’s interested I can provide links to a few other articles. etc.
Teri
I noticed that histamine and mast cell issues are mentioned here fairly often, so was surprised to learn that so few of us have been diagnosed or tested, and possibly none in the last 5 years or so. During that time, proposed diagnostic criteria for a number of Mast Cell Disorders have been adopted, there’s been an explosion of new interest and research, and a growing number of practitioners getting involved in treatment. So I don’t think its that outlandish to hope that a non-hostile PCP or other practitioner could at least order the relevant tests. They might not know how to interpret the results, but at least its a start.
For anyone considering pursuing this, its pretty easy to request re-examination of biopsy slides using the correct stains, so this might be a good starting point. Since this “recount” confirmed that my Mast Cell #’s are elevated, I’ll now ask my PCP to order the additional diagnostic labs, as outlined above in the WHO criteria.
I’ve been doing more reading at: http://tmsforacure.org which has a very well organized website with a lot of current info, research, etc., but
the http://mastcelldisorders.wallack.us/yabb/YaBB.pl forum seemed to have very few postings in recent years. Perhaps they relocated to Facebook?
There are also a few blogs with lots of info. I haven’t looked into them very carefully, but immediately noticed some interesting stuff on this one:
http://www.mastattack.org/2017/04/masta ... es-part-2/
This is another particularly good, well-organized research article on diagnosing mast
cell disorders: http://onlinelibrary.wiley.com/doi/10.1 ... 24553/full
“Systemic mastocytosis in adults: 2017 update on diagnosis, risk stratification and management.”— American Journal of Hematology October 2016
If anyone’s interested I can provide links to a few other articles. etc.
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Hi Terry,
I believe that mast cells will be the primary focus for MC treatments at some point in the future. I agree with you that the mainstream medical community is pretty much completely overlooking this and I can make a case that mast cells are the primary engine driving the inflammation associated with MC and all other autoimmune issues. This will be discussed in my next book.The problem is there's no way to measure histamine, so it has to be measured indirectly, using tryptase or some other means.
Tex
I believe that mast cells will be the primary focus for MC treatments at some point in the future. I agree with you that the mainstream medical community is pretty much completely overlooking this and I can make a case that mast cells are the primary engine driving the inflammation associated with MC and all other autoimmune issues. This will be discussed in my next book.The problem is there's no way to measure histamine, so it has to be measured indirectly, using tryptase or some other means.
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.
Hi,
It's been available for several months. It's called Understanding Microscopic Colitis, and it's available in hardback, paperback, and digital versions. (Of course Amazon doesn't sell hardbacks, but they do offer the other versions).
Tex
It's been available for several months. It's called Understanding Microscopic Colitis, and it's available in hardback, paperback, and digital versions. (Of course Amazon doesn't sell hardbacks, but they do offer the other versions).
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.