Very dizzy after consuming kefir. MCAS?

[ChookityPop]

I have a history of anaphylaxis and lots of food intolerances. Late last year I tried drinking kefir and after consuming it for a week I started to get severe dizziness. To the point it was not safe to drive.

Is this a sign of MCAS?

I have dysautonomia. I wonder if it would help my blood pooling to go as low histamine as I can. I eat mostly ground beef which has high amounts of histamine.

 

[nerd]

Was it fresh Kefir with active yeast or was it the prefabricated inactive stuff from the grocery store?

 

[Judee]

Ken Lassessen talks about how probiotics that are high in lactobacillus seems to backfire on PwME. Here's one of is posts but he also references others further down the page:https://cfsremission.com/2019/06/10/reducing-lactic-acid-producing-bacteria/

Here's one of those where he says things like sauerkraut are not good (in his opinion) for people with CFS: https://cfsremission.com/2015/09/21...uerkraut-is-not-good-for-you-if-you-have-cfs/

 

[ChookityPop]

Ken Lassessen talks about how probiotics that are high in lactobacillus seems to backfire on PwME. Here's one of is posts but he also references others further down the page:https://cfsremission.com/2019/06/10/reducing-lactic-acid-producing-bacteria/

Here's one of those where he says things like sauerkraut are not good (in his opinion) for people with CFS: https://cfsremission.com/2015/09/21...uerkraut-is-not-good-for-you-if-you-have-cfs/

Interesting, thanks!

 

[ChookityPop]

Was it fresh Kefir with active yeast or was it the prefabricated inactive stuff from the grocery store?

It was prefabricated from the grocery store?

 

[MCASMike]

I have had terrible bouts of loss of balance, and last October a short car ride led to a horrible motion sickness sensation, but with MCAS, you have two options. One being to find a doctor who understands the testing and determine if you meet current diagnostic criteria for it. The other is to try out a reasonable MCAS protocol, such as the one Afrin mentions in his book about MCAS. I think at least two of my relatives have MCAS (they seem to be willing to just treat one symptom at a time rather go with a systematic MCAS protocol), and they are both highly sensitive to specific food/beverages but otherwise have no problems with others (and it's not like some are high histamine while others are not). I am the same way, and are food/beverage sensitivities are all different, which is what Afrin and other MCAS experts have pointed out. So, it seems like you will need to learn what to avoid even if you go for MCAS testing and are clearly positive, but of course if you can find an MCAS specialist you might as well get his/her opinion.

 

[ChookityPop]

I have had terrible bouts of loss of balance, and last October a short car ride led to a horrible motion sickness sensation, but with MCAS, you have two options. One being to find a doctor who understands the testing and determine if you meet current diagnostic criteria for it. The other is to try out a reasonable MCAS protocol, such as the one Afrin mentions in his book about MCAS. I think at least two of my relatives have MCAS (they seem to be willing to just treat one symptom at a time rather go with a systematic MCAS protocol), and they are both highly sensitive to specific food/beverages but otherwise have no problems with others (and it's not like some are high histamine while others are not). I am the same way, and are food/beverage sensitivities are all different, which is what Afrin and other MCAS experts have pointed out. So, it seems like you will need to learn what to avoid even if you go for MCAS testing and are clearly positive, but of course if you can find an MCAS specialist you might as well get his/her opinion.

Thanks! I fear that there is very limited MCAS knowledge if any here in Norway. I think they only take Mastocytosis seriously. I dont think they take MCAS seriously because of evidence based medicine I would imagine. They are lagging so far behind on many different areas in the health sphere. So boring and conservative.

Did you mean like some foods will make some people react and some people wont react to that said food? Like ground beef is said to have high histamine, but I seem okey with it but others will have issues.
I do have blood pooling either way so I guess it would be worth it to try as low histamine as I can but I cant give up meat, I look at meat as the basis of an healthy diet. And fresh (like just butchered) meat is difficult to get it seems.

 

[MCASMike]

I can eat dried fruit, which is supposed to be bad, but I don't have issues with that. Fried food really bothers me, though. I used to eat a hard boiled egg later in the day but I found I could only eat one for breakfast, etc. Just try out what works and what does not as far as diet is concerned, is my way of looking at it, but you might benefit from one or another protocol as far as meds/supplements are concerned. I take an H1 antihistamine, aspirin, vitamin D3, rutin, luteolin, nicotinic acid, etc. each day, for example.

 

[barabara]

Maybe the lactic acid in the kefir caused symptoms.

 

[ChookityPop]

I can eat dried fruit, which is supposed to be bad, but I don't have issues with that. Fried food really bothers me, though. I used to eat a hard boiled egg later in the day but I found I could only eat one for breakfast, etc. Just try out what works and what does not as far as diet is concerned, is my way of looking at it, but you might benefit from one or another protocol as far as meds/supplements are concerned. I take an H1 antihistamine, aspirin, vitamin D3, rutin, luteolin, nicotinic acid, etc. each day, for example.

Interesting, I have had a feeling its individual as you now say.
Its really hard to notice the symptoms I think since I have blood pooling 24/7 tho it varries in severity. I have to track better I guess. I take Ketotifen eye drops which is an H1 antagonizer and mast cell stabilizer. Is it okay to take desloratadine/Aerius as well which is an H1? Other then that I take vitamin d3 and vitamin c.

 

[ChookityPop]

Maybe the lactic acid in the kefir caused symptoms.

I read that milk contains 0.1g lactic acid per L and if I saw correct kefir contains over 20 times that amount. Is consuming lactic acid problematic in ME or dysautonomia?

 

[barabara]

I read that milk contains 0.1g lactic acid per L and if I saw correct kefir contains over 20 times that amount. Is consuming lactic acid problematic in ME or dysautonomia?

Not specifically. It's more likely to be a problem if your lactate or anion gap is high, which has to do with mitochondrial disease and hypothyroidism, both of which are more common in CFS.

My anion gap was usually above normal when I was hypothyroid, then it dropped to within normal when I took lots of levothyroxine. However, my neurological problem (ME) makes me intolerant to stuff that increases my brain activity, so my conclusion is that I increased dosage too quickly for my brain, despite my body producing less lactate and having a positive response.

I recall that when I ate a lot of greek yogurt after not eating it for a while, I'd suffer from burning muscle pain, especially in my coathanger. Keep in mind, not all kefir and yogurts are equal. The more strained varieties are less sour because they have less lactic acid, and they are preferable.

 

[MCASMike]

Interesting, I have had a feeling its individual as you now say.
Its really hard to notice the symptoms I think since I have blood pooling 24/7 tho it varries in severity. I have to track better I guess. I take Ketotifen eye drops which is an H1 antagonizer and mast cell stabilizer. Is it okay to take desloratadine/Aerius as well which is an H1? Other then that I take vitamin d3 and vitamin c.

Yes I take a few other things, such as selenium, zinc, copper (zinc in the morning, copper before bed), ascorbic acid, etc., but as to desloratadine, since that's a medication, you'll need to talk to a doctor or if it's OTC, make up your own mind about it (I have taken loratidine other than the first few days of discovering MCAS, when I took some Antivert because I had it on hand).

 

[Flnn]

I have a history of anaphylaxis and lots of food intolerances. Late last year I tried drinking kefir and after consuming it for a week I started to get severe dizziness. To the point it was not safe to drive.

Have you ever tried a gut microbiome test?

 

[ChookityPop]

Have you ever tried a gut microbiome test?

I havent yet, but its on my list. To see how my diversity is? Or DAO etc?

 

[Flnn]

I havent yet, but its on my list. To see how my diversity is? Or DAO etc?

You mentioned anaphylaxis and food intolerances.

https://pubmed.ncbi.nlm.nih.gov/27749359/ - The role of the gut microbiota in food allergy

Recent findings: Food allergy is associated with alterations in the gut microbiota or dysbiosis early in life that may be predictive of disease persistence versus tolerance acquisition.

 

[ChookityPop]

You mentioned anaphylaxis and food intolerances.

https://pubmed.ncbi.nlm.nih.gov/27749359/ - The role of the gut microbiota in food allergy

Recent findings: Food allergy is associated with alterations in the gut microbiota or dysbiosis early in life that may be predictive of disease persistence versus tolerance acquisition.

Thanks for sharing. This is very likely relevant as I had an incredibly poor diet growing up that Im pretty sure promoted gut dysbiosis. Plus other things could have contributed.

Might be tbi But I remember growing up I had blood in my stools not super frequent but I dont think it was that rare either. I always had bloating and a lot of gas etc. That cant be good. I cant remember the last time I had bloody stools now.

 

[ChookityPop]

You mentioned anaphylaxis and food intolerances.

https://pubmed.ncbi.nlm.nih.gov/27749359/ - The role of the gut microbiota in food allergy

Recent findings: Food allergy is associated with alterations in the gut microbiota or dysbiosis early in life that may be predictive of disease persistence versus tolerance acquisition.

They apparently gave antibiotics to the Hadza tribe which has the most diverse microbiome known to man. And it messed with their gut biome But after they went back to the tribe and continuing their life they grew back their microbiome diversity.

So in theory we should be able to do that as well? It probably isnt as black and white as that But I really think there is something there. Maybe we should go live with the Hadza. I wonder What that would have done to an ME CFS patient. Totally fixing their microbiome.

They live as we did as hunter gatherers. And they apparently dont get all the diseases we do in the west like lifestyle diseases and bowel cancers etc.

 

[Krokus]

@ChookityPop
In Kefir is alcohol in small amounts. If you can't tolerate alcohol this maybe a reason why you feel dizzy. IN MCAS it is said that you may have problems with alcohol.
I have similar like you many food intolerances and I will try to get histamine etc. tested in a while. At the moment I am looking through the tests available and gathering those which fit to my case.

 

[ChookityPop]

@ChookityPop
In Kefir is alcohol in small amounts. If you can't tolerate alcohol this maybe a reason why you feel dizzy. IN MCAS it is said that you may have problems with alcohol.
I have similar like you many food intolerances and I will try to get histamine etc. tested in a while. At the moment I am looking through the tests available and gathering those which fit to my case.

I havent tried drinking alcohol after my relapse. But that's interesting, I will get some testing done myself.