Testing for Mast Cell Issues

[Xhale19991]

Are their any tests I can get done to see if MCAD or mastocytosis could be an issue for me? Or any lifestyle changes I can make that would indicate an Mast Cell problem if they helped?

 

[ahmo]

Hi Xhale. The one reliable test for Mast Cell disorder is bone marrow. Not going there. But I've since followed recommendations, especially from lowhistaminechef, that finally have my histamine reactions controlled. I spent some time on the Canadian MCAD site, didn't find a lot of help there. But the following links have all been useful for me. I'm now using rutin, royal jelly, quercetin and vitamin C + Ca to help mobilize histamines out of cells. These, as well as avoiding all histamaine-producing foods, mean I'm now having less reactions than I've had for over a decade. cheers, ahmo

http://thelowhistaminechef.com/dr-castells-interview-the-role-of-stress-in-mast-cell-disorders/

http://thelowhistaminechef.com/dr-c...ges-do-work-for-mast-cellhistamine-disorders/

Mastocytosis with Theoharis C. Theoharides, MS, PhD, MD, FAA‬
http://www.youtube.com/watch?feature=player_detailpage&v=CplxXGpFeKQ
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‘Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬
https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q

http://forums.phoenixrising.me/index.php?attachments/allowed-restricted-foods-pdf.6408/
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http://roosclues.blogspot.com.au/2010/03/overview-of-high-histamine-also-called.html
http://criticalmas.com/2012/05/the-low-histamine-diet/ food list
http://thelowhistaminechef.com/these-probiotic-strains-lower-histamine-rather-than-raising-it/

 

[camas]

Hi Xhale,

I've attached a paper from Dr. Afrin who is an expert in MCAS. At the end of the paper are tables listing the tests that can help rule out MCAS. Like ahmo, I have no plans to get a bone marrow biopsy. There are other tests which can be run though, but require a knowledgeable physician and lab. I was given a clinical diagnosis of TMEP Mastocytosis based on my odd skin lesions which result from mast cells releasing too much heparin.

I've also improved following the low histamine diet in my signature. Some find an anti-inflammatory diet to be helpful, too. It's important to figure out your triggers (chemicals, drugs, foods, allergies, etc) and try to avoid them. Easier said than done, but everyone is different and needs a tailored approach.

I'm also using the drug cocktail recommended by Dr. Afrin - an H1 and H2 blocker and klonopin because benzodiazepines are mast cell stabilizers, but I think avoiding high histamine foods has made the biggest difference for me.

I'm far from 100%, but am on a good plateau now where I can plan on having a certain amount of energy and strength from day-to-day and much less PEM. I spent most of yesterday scraping wallpaper from my bedroom ceiling. The day before that I went for a mile walk. And the day before that I had a long eye doctor appointment. So three eventful days without crashing, although I'm taking today off for good measure.

 

[Xhale19991]

Thanks you two. Appreciate the help.

Just curious, why are you apprehensive about the bone marrow biopsy? Is it simply because of the pain or is the test not very accurate?

 

[Aerose91]

Xhale im with you on this. Ive had M.E. for a year now and recently had a major change for the worse and i have a strong suspicion it could be mast cell activation. i knew people with adrenal fatigue that had mast cell activation and she found some specific test for it that caught it but it wasnt bone marrow, im going to try and figure out what that was.
Anyway im curious about the marrow test, what are the hesitations? I am willing to do whatever is necessary to get an accurate diagnosis.

And just FYI i eat a low histamine diet and have for years.

 

[camas]

I watched my late husband go through bone marrow biopsies and they weren't pleasant. Plus the biopsies are really only helpful in diagnosing Mastocytosis which is rare. In Mastocytosis there is an overproliferation of mast cells. In MCAS the number of mast cells is normal, but the cells are twitchy and easily triggered. MCAS is thought to be much more common. That's what I've gathered from my reading anyway. Dr. Afrin goes into it all in his paper.

 

[Aerose91]

Is MCAS reversible over time?

And im sorry to hear of your husband

 

[ahmo]

@camas,

I'm also using the drug cocktail recommended by Dr. Afrin - an H1 and H2 blocker and klonopin because benzodiazepines are mast cell stabilizers, but I think avoiding high histamine foods has made the biggest difference for me.

You might be interested in this talk. Dr. Castells 'debunks' H1/H2 use prophylactically. For me, all pharmaceuticals push me into histamine reactions. The supps I listed have been wonderful for counteracting the effects once histamines are stimulated. Re bone marrow: I'd never agree to invasive procedure, especially just to label a problem I know I have. Dr. Theoharides vid linked above talks about how much more prevalent these disorders are than generally suspected.

http://thelowhistaminechef.com/dr-janice-joneja-histamine-intolerance-interview-pt2/

 

[camas]

@camas, You might be interested in this talk. Dr. Castells 'debunks' H1/H2 use prophylactically. For me, all pharmaceuticals push me into histamine reactions. The supps I listed have been wonderful for counteracting the effects once histamines are stimulated. Re bone marrow: I'd never agree to invasive procedure, especially just to label a problem I know I have. Dr. Theoharides vid linked above talks about how much more prevalent these disorders are than generally suspected.

http://thelowhistaminechef.com/dr-janice-joneja-histamine-intolerance-interview-pt2/

Hi ahmo,

I haven't been able to tolerate quercetin, neuroprotek, etc. The only supplements I'm using are mag, vit c, vit K2 (to move calcium from the blood to the bones since calcium triggers mc) and the herb feverfew which has some of the same mc stabilizing components found in neuroprotek.

I also follow the low histamine chef since she participates in some facebook groups. Unfortunately I can't tolerate most of the foods she recommends. I think that is what is most difficult about this -- there is no one-size-fits-all treatment. It's a matter of trial and error finding what works best for us. I'll have a look at the video though. I only use small doses of H1 and H2. I find klonopin to be the most helpful part of my drug regimen. Although when I'm having a day with more weakness than usual - zyrtec will really bring me out of it quickly.

 

[camas]

Is MCAS reversible over time?

And im sorry to hear of your husband

Thank you @Aerose91. I believe that Dr. Castells has said that she believes MCAS is reversible and Dr. Afrin seems to think that with the right treatment MCAS patients can be greatly improved. I think it's a matter of tailoring the treatment to fit the patient. We just need more of these good doctors!

 

[ahmo]

Hi camas. Good to hear about feverfew, I might try it as well. Reading your post makes me very grateful that my situation is so mild, relatively speaking. I've never gone into lowhistaminechef's recipes, you're not the first person who's commented on them. (I think Critterina said the same.) I'm on a very minimal GAPS diet, which is working for me. Thanks for all the links in your signature. cheers, ahmo

 

[Xhale19991]

When you guys eat something high in histamine, is your reaction immediate? Or does it take a few hours before you start to feel the effects from it?

 

[ahmo]

I was going to write, Not immediate for me, but I'm not eating any of these foods. However, I've read descriptions that say it's like filling a bucket: once a certain level of histamines is reached, there's a reaction. Suggests we can tolerate some amount...well, some people can.

 

[camas]

When you guys eat something high in histamine, is your reaction immediate? Or does it take a few hours before you start to feel the effects from it?

I was already avoiding a number of high histamine foods without realizing it because of a burning sensation and flushing of my mouth/skin and sometimes throat swelling -- pretty immediate reactions. But I must have had some latent reactions from other foods I was eating, because when I started following the diet in my signature (low histamine and low tyramine) I started noticing a difference in my energy, strength, PEM, etc.