Hello everyone!
It has been a while since I've been on this forum, but I was drawn back by a member who PM'd me and was reminded what a wealth of information you all are!
A quick recap: I have Celiac (dx'd 2009) and Lupus (dx'd 2014) but I never got better after going gluten free. Multiple doctors were never able to give me any answers beyond having IBS and GERD. I've had 2 scopes, but they both just showed "normal" inflammation in my esophagus, stomach, and small intestine.
As far as diet, I've never shown up positive to anything on multiple food intolerance tests (and now I'm on chronic prednisone so testing isn't accurate). I stick to paleo, which helps some, I've been stuck on low FODMAP for a year and a half, and recently added in low oxalate to help with my interstitial cystitis. This has all left me with not a lot of food options.
I've spent the last year or so trying to kill SIBO with little improvement before I finally decided I needed to dig deeper, which led me to noticing some histamine issues (increased allergies, flushing, itching, hives) and going to an immunologist. After running some tests, she is starting me on gastrocrom and she started me on quite a few antihistamines at my first visit which have definitely helped.
I remembered reading a few things about mast cells here, and I am wondering if this is finally my underlying issue? Or, is there usually an underlying cause to the mast cell issues that I need to dig in to? After being sick for many years I'm very eager to find answers and would appreciate any resources you can point me to!
Mast Cell Issues
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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amberlink09
- Adélie Penguin
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amberlink09
- Adélie Penguin
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Hi Amber,
I'm sorry to see that you're still having symptoms after working so hard to resolve them. Yes, mast cell problems are very, very common with MC, but most doctors are still unaware of that because of the lack of published research on the topic. You may have already seen this information, but just in case you haven't, here's some basic information about mast cells, and how mast cell issues are associated with microscopic colitis:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Hopefully, you will have better luck with the gastrocrom than most of the members here who have tried it, but to date, it doesn't seem to have a very good track record for resolving mast cell issues for MC patients. Antihistamines seem to be the most effective treatment available. Many of us take one or more antihistamines every day.
To answer your question about a low-histamine diet: It's impossible to avoid histamines altogether (and besides, the body has to have histamines in order for the digestive system and the immune system to function normally). The goal is to limit total histamine intake on a continuing basis. The best way to do that is to minimize the quantity of high-histamine foods in your diet. It's also necessary to avoid medications that promote the production of histamines.
One of the big issues we've discovered since you stopped posting is the role that magnesium plays in the development and perpetuation of MC and AI symptoms in general. I'll share a little insight into the way this appears to work. I'll PM you a couple of quotes taken from an early version of the manuscript from my next book. Be aware that the final (published) version may have editing changes, but at any rate, those are some of my thoughts about how profoundly a magnesium deficiency can affect/promote inflammation in the body, and it's supported by published medical research reports.
Feel free to share the information that I PM you with your immunologist, but be prepared for her to laugh at my observations, because the medical community in general is way behind on research and understanding of these issues. And because my observations have not been published in a prestigious medical journal, and/or endorsed by any mainstream medical professionals, most medical professions will surely refuse to acknowledge that my theory might have any validity.
If she should happen to agree with me, however, please let me know. It's not impossible that she might agree with me, because there are a few forward-thinking medical professionals out there who try to keep an open mind.
About 80 % of the general population is thought to be magnesium deficient. IBDs deplete magnesium. The corticosteroids used to tread IBD and other AI issues deplete magnesium. IOW, like virtually every one of us here, you are almost surely magnesium deficient, even if you are taking a substantial magnesium supplement. And especially because of the prednisone treatment, you are virtually guaranteed to have a serious magnesium deficiency, and this could be definitely be a factor in your persistent symptoms.
If you would like more information on the symptoms associated with magnesium deficiency, please read the chapter on magnesium in my Pancreatic Cancer book. You can download a copy free at https://www.smashwords.com/books/view/665808 and most other booksellers who sell digital books (except for Amazon — they refuse to allow authors to price digital books below 99 cents).
I hope that some of this is helpful.
Tex
I'm sorry to see that you're still having symptoms after working so hard to resolve them. Yes, mast cell problems are very, very common with MC, but most doctors are still unaware of that because of the lack of published research on the topic. You may have already seen this information, but just in case you haven't, here's some basic information about mast cells, and how mast cell issues are associated with microscopic colitis:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Hopefully, you will have better luck with the gastrocrom than most of the members here who have tried it, but to date, it doesn't seem to have a very good track record for resolving mast cell issues for MC patients. Antihistamines seem to be the most effective treatment available. Many of us take one or more antihistamines every day.
To answer your question about a low-histamine diet: It's impossible to avoid histamines altogether (and besides, the body has to have histamines in order for the digestive system and the immune system to function normally). The goal is to limit total histamine intake on a continuing basis. The best way to do that is to minimize the quantity of high-histamine foods in your diet. It's also necessary to avoid medications that promote the production of histamines.
One of the big issues we've discovered since you stopped posting is the role that magnesium plays in the development and perpetuation of MC and AI symptoms in general. I'll share a little insight into the way this appears to work. I'll PM you a couple of quotes taken from an early version of the manuscript from my next book. Be aware that the final (published) version may have editing changes, but at any rate, those are some of my thoughts about how profoundly a magnesium deficiency can affect/promote inflammation in the body, and it's supported by published medical research reports.
Feel free to share the information that I PM you with your immunologist, but be prepared for her to laugh at my observations, because the medical community in general is way behind on research and understanding of these issues. And because my observations have not been published in a prestigious medical journal, and/or endorsed by any mainstream medical professionals, most medical professions will surely refuse to acknowledge that my theory might have any validity.
If she should happen to agree with me, however, please let me know. It's not impossible that she might agree with me, because there are a few forward-thinking medical professionals out there who try to keep an open mind.
About 80 % of the general population is thought to be magnesium deficient. IBDs deplete magnesium. The corticosteroids used to tread IBD and other AI issues deplete magnesium. IOW, like virtually every one of us here, you are almost surely magnesium deficient, even if you are taking a substantial magnesium supplement. And especially because of the prednisone treatment, you are virtually guaranteed to have a serious magnesium deficiency, and this could be definitely be a factor in your persistent symptoms.
If you would like more information on the symptoms associated with magnesium deficiency, please read the chapter on magnesium in my Pancreatic Cancer book. You can download a copy free at https://www.smashwords.com/books/view/665808 and most other booksellers who sell digital books (except for Amazon — they refuse to allow authors to price digital books below 99 cents).
I hope that some of this is helpful.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
For me, resolving mast cell /excess histamine issues happened when I resolved Vit B6 and magnesium deficiencies....
Tex has discussed the magnesium aspect. For B6, I take the active form of B6, which is P5P
this article is great summary
http://alisonvickery.com.au/why-your-vi ... important/
hope this helps.
Tex has discussed the magnesium aspect. For B6, I take the active form of B6, which is P5P
this article is great summary
bold highlight is mineVitamin B6 is a cluster of compounds (not just one) that is a co-factor in over 100 biochemical reactions in the body which is why your Vitamin B6 level is important.
Here are just a few of the things that studies show that it does for you:
Increases diamine oxidase plasma levels.
Degrading glutamates and MSG.
Metabolises proteins.
Reduces oxalate levels
Inhibits the degranulation of mast-cells.
Moderates cortisol levels.
Regulates blood sugar levels and glucose tolerance.
Converts ALA to DHA.
Acts as a potent anti-oxidant.
Synthesises neurotransmitters; serotonin, dopamine, and GABA, and norepinephrine.
Relieves PMS, dermatitis, mosquito bites, irritability, depression, and short-term memory issues.
http://alisonvickery.com.au/why-your-vi ... important/
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
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amberlink09
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christinafriberg
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