low carb and MCAS

[ankaa]

in addition to low histamine, does going low carb help MCAS? I'm miserable today, and no amount of quercetin can seem to fix it.. My eyeballs are going to fall out of my head!

 

[Kate]

I can't really say, I haven't got my mast cell/histamine piece worked out yet, but I know in the Spring when I am at my worst with a pollen intolerance as well as allergy I try not to eat before noon or two, encouraging mild ketosis and it helps a lot. My diet is always fairly low carb. Also I drink a teaspoon of bentonite clay in water on my worst days which really helps. And a good bath with some bentonite clay and epsom salts is at least soothing, seems to reduce reactions.

It seems to me on these days eating a piece of bread can make it worse. This might indicate for me that low carb is better. I do not seem to be sensitive to gluten.

 

[Kate]

Perhaps you know this woman's work: https://healinghistamine.com/ Yasmina Ykelenstam has strategies. She DOES NOT recommend adopting a low histamine diet. https://healinghistamine.com/diagnosing-histamine-disorders/

 

[ankaa]

Perhaps you know this woman's work: https://healinghistamine.com/ Yasmina Ykelenstam has strategies. She DOES NOT recommend adopting a low histamine diet. https://healinghistamine.com/diagnosing-histamine-disorders/

I thought that she had a low histamine cookbook... no?? Why does she advise against a low histamine diet?

 

[Lolinda]

In my case, low carb contributed to get me happily free of nearly all symptoms. But I had to go verrry low carb to get the effect. I am under the impression though, that I have only suppressed symptoms but not the pathomechanism itself, whatever that is.
➞ Details what I did and what resolved here. (The link points to Phoenixrising. I am slowly about to leave Phoenixrising for Healthrising.)

A question:
Here it says:

• many can experience a general worsening trend over time

How does this match with your experiences? Does anyone know what causes the worsening?

 

[ankaa]

In my case, low carb contributed to get me happily free of nearly all symptoms. But I had to go verrry low carb to get the effect. I am under the impression though, that I have only suppressed symptoms but not the pathomechanism itself, whatever that is.
➞ Details what I did and what resolved here. (The link points to Phoenixrising. I am slowly about to leave Phoenixrising for Healthrising.)

A question:
Here it says:

• For most, symptoms wax and wane, but many can experience a general worsening trend over time

How does this match with your experiences? Does anyone know what causes the worsening?

Yes, I having have been on a push- crash cycle my whole life... I'm not as sick as some, (no POTS, thankfully.. that would put me over the edge) but I don't have a good quality of life either... plus I'm broke... currently, I'm coming out of a crash but I'm generally not as strong as I used to be and I have to work harder than ever to catch up, which freaks me out

How low carb did u have to go? 20 grams of carbs per day?

 

[Lolinda]

[fleft]
Why on earth does the "float left" not put the text to the right and the pic to the left??

The above is a random day.

I never thought of eating "x g carbs per day" but as "tons of starch-free veggies, tons of butter, some coconut oil, some cocoa butter and olive oil, and much freshly grilled fish and some meat." It feels happier this way
[/fleft]

Tha waxing and waning I can (more exactly: could ) live with. But the general worsening over a long time is what worries me. Do you have that too?

• I had that before resolving symptoms by low carb, motivity improvements, etc.
• But I still have it because if I accidentally eat a little starch, I get meanwhile so so so badly sick. worse and worse.

This is what really worries me. What if one day even my very low carb is no more enough? I wish I knew more about this worsening trend, what the pathomechanism is, and how the worsening happens in others, and if anyone ever was able to stop the trend. In me, the trend is not only felt strongly but measured as methylhistamine in 24h urine:

• 2011 (full-grain high fat diet, deteriorating health, still more healthy than sick): 6.6 (< 6.5) µg/nmol creatinine
• 2016 (very low carb since 2014, more sick than healthy, though meanwhile many probs resolved): 7.5 (< 6.5) µg/nmol creatinine

 

[Kate]

I thought that she had a low histamine cookbook... no?? Why does she advise against a low histamine diet?

She says it isn't that simple. Some foods can be tolerated and then should be. That eliminating all histamine foods can sometimes increase your sensitivity to them. I found this with salicylates. When I decreased eating them to virtually nil I reacted far more when I did eat some.

 

[Johnt_73]

Low carb per se isn't going to help. Being on a low histamine diet is certainly a good starting point. You can see a low histamine food guide here. https://mummyandchild.com/histamine-foods/

 

[Issie]

I have both POTS and MCAS. There are some good threads on this forum in regard to MCAS and a new approach that sounds VERY contrary to what would seem logical. But once you understand how histamine receptors work and what they do and that it takes histamine to help turn certain receptors on and to turn off mast cell degranulation.....then you can see the need for this approach. We actually need to get our H2R (receptor) to turn on when it needs to. Having it not function properly allows for the H1R to trigger too large of a mast cell degranulation and a release of too much histamine and other inflammatory things.

I'm actually improving my MCAS by using and adding a small amount of histamine to reset and trigger my H2R to turn on and prevent my own bodies need to degranulate and cause histamine over response. Nettle tea has been very beneficial to help with this. But before that and when I was getting off anti histamine, I used a cream with histamine. That was very tricky as timing was crucial. But I had enough warning when I would be about to have an "attack" and if I got on it fast enough, could stop it from happening.

There are lots of papers and links to read on these threads. And also a link to read a book by a Russian doctor who explains the science and how he used it in his practice. It is highly controversial. And his book is a very hard read. But if you want to know the science, its there.

I do find a diet to be beneficial. I agree grains are a problem. As are nightshade and oxylates and to a certain degree lectins. Sugar may be a larger problem than people may realize. Many of us have issues with fructose.

Sadly, Yasmin has passed. She was a great help to so many of us and a wonderful pioneer to the affect of foods and finding alternative ways to deal with MCAS. She didn't use antihistamines either.

I can post links if you have trouble finding the information.

I was a badly affected MCAS person. I was on antihistamines and GastroCrom daily for 8 straight years. And had an ICU overnight stay when it attacked my heart, called Kounis Syndrome. Now, I just use GastroCrom (rarely), if I don't get on top of it soon enough. I can't stress enough, how important diet is.

But histamine is a necessary and beneficial thing. We need it. It does good things. We just need our bodies to regulate the amount it releases and turn it down when it needs to.

Issie

 

[Issie]

Low carb per se isn't going to help. Being on a low histamine diet is certainly a good starting point. You can see a low histamine food guide here. https://mummyandchild.com/histamine-foods/

Good site. I agree with her wholeheartedly on there being issues with Glutamate. If you do a search on this forum and the blog site of Healthrising, you will find a lot of research that both Dejurgen and I have done in regard to glutamate and how that plays into our illnesses.