24/7 365 chronic brain fog/inability to think, MCAS, EDS 3, GERD, SIBO

[Fogbuster]

I have been battling an invisible syndrome for over 7 years now and my mental health is definitely declining as a result of this - main issues being reaction to all foods and inability to think. I get a flare up of symptoms to an enormous amount of foods, I quite simply don't understand what I can eat after all these years due to reacting to all these foods and being in a constant state of dissociation from my thoughts, it's just utterly bizarre. My immune system is constantly active at least to some degree, even eating low histamine and salicylate foods and still getting reactions...this is why I've had very little success on stone age diets, elimination diets, Keto and even an elemental diet, as I flare up to even hypoallergenic ingredients...

I read recently that MCAS is like PTSD for the body and its so true, its like my gut-brain axis just can't calm down and so my brain is in a constant low level inflammatory state from random mediators, so brain and body are constantly in self protection mode dissociating me from my thoughts. In effect, its like trying to use a computer for work when its stuck in sleep mode. No Bueno.

I seem to have the same cognitive issues as @panckage . My inability to think gets even worse after eating as I get mild-moderate DP/DR along with the inflammatory reaction, its just insanely bad. It's also accompanied by joint pain (knees, wrists, boney area around brain stem, neck and shoulders), malaise, inability to get full satisfying breath without difficulty (used to be worse), constant varying tremor, eye pressure/pain (has got worse), panda eyes when really crummy, clogged ears, sinusitis, intercranial pressure around forehead and crown, and around eyes and nose (gets worse after eating); pain around brain stem, spinal cord and neck area gets much worse after eating too. Considering I react the strongest to histamine and salicylate foods, I have become strongly convinced that at the very least I have mast cell activation syndrome. On the plus side, there's no anaphylaxis. Oh and I look healthy most of the time to top all of this off.

All these symptoms I've mentioned occur when I eat things which make me flare up, eating foods which aren't problematic for me though is nigh on impossible at the moment and its sort of driving me a bit nuts really. The reaction I get from eating problematic foods feels like a high pressure gas pipe being punctured and releasing fibreglass crystals throughout my bloodstream.

I was able to see a decent endocrinologist who did a bunch of tests for me. He wasn't able to find anything to prove that I have mast cell issues, but did find extremely high fecal secretory IgA levels. The range was from 0-885mcg/g and my score was 1862 mcg/g... He asked me to follow a Bi-Phasic diet along with antibiotics, but the issue is I react to a large amount of the foods on the allowed list and of course had salicylate issues too. Due to my unrelenting intense blankness which affects my ability to coordinate and organise anything in my head, it sort of fell by the wayside. I'll be getting back in contact with him, but just want to be able to gather some semblance of thoughts first of what I want to say...!

With regards to doing anything which involves thinking, gathering thoughts or trying to organise/coordinate any of my findings, it feels like trying to walk through a huge maze in the dark. What on earth could cause this? Severe ADD? BPD 2? Because of my issues around my brain stem and hitting my head very hard as a child, it could be CCI. Another possibility could be Bartonella, I have the exact same looking reddy/purple stretch mark looking streaks on my abdomen and hips, along with inner thighs that is in the link below. The ones on my hip look exactly like the ones in this link - https://www.lymedisease.org/lyme-basics/co-infections/bartonella/

Due to not finding anything related to mast cell issues in tests yet, this study released a few months ago helped reinforce confidence within me that what im experiencing with regards to food is backed by science - Idiopathic Mast Cell Activation Syndrome and Associated Salicylate Intolerance https://www.ncbi.nlm.nih.gov/pubmed/29637062

I have very recently downloaded this brilliant app called "Intolerances", you're able to select which type of sensitivities you have and it'll tell you which foods you can eat. My intolerances were fructose, oligosaccharides, sorbitol, lactose, sucrose, fodmaps, histamine and salicylates, wheat, milk & soy. Eggs for petes sake are low in EVERYTHING as proven on this app, yet I reacted quite strongly to eating two boiled eggs for breakfast with just salt the other day.. Give. me. a. break. Even though eggs have virtually no salicylates, I read that if you don't eat salicylates in a while, it can increase your sensitivity..…

On a more positive note, I have responded well to Nasalcrom and Fexofenadine (4th day) so far. Both calm different systems it seems. Nasalcrom has a pretty much instant effect, its like getting in a warm bath for my gut lining when I feel awful after getting a flare up. Fexofenadine seemed to make more of a hit on my cognition, intercranial pressure and nervous system, but only like a 5-10% improvement at the mo. This might of been placebo, but I took Fexo in the early evening on the first day and it genuinely felt close to being a sort of magic bullet, it was lifting my fog/DP and I was able to process everything on tv for once and as a result of that, I was laughing much more as I was completely engaged. Which is pretty much an alien concept to me now! I thought it would be best to take Fexo in the mornings, but considering I got such great results from taking it at 5pm instead of 9am, maybe I should take it later in the day. Has anyone else experienced this interesting phenomenon? No specific info mentioning that taking it in evening is better though. Hmm.

Lastly, why is it that when I close my eyes I'm able to think more clearly? Oh and if there is anyone with a similar story, please let me know.

Thanks so much for reading and have a great weekend!

 

[wigglethemouse]

You can read "Never bet against Occam" by Dr Afrin for lots of info on MCAS. Dr. Afrin is the one that pioneered the MCAS treatment field. I highly recommend reading it.

Doctors could be referred to this paper, also by Dr. Afrin, where Fig 5 and the text following it details the blood and Urine testing along with special handling instructions.
https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

You should check if all the tests listed were carried out by your doctor. Many doctors just test histamine and tryptase but often these are normal in MCAS and there are more tests. Blood for some tests needs to be frozen ASAP and urine chilled quickly, as the half life of some of the things being tested is very short. It's important to mention this to the lab drawing the blood.

Sometimes repeat testing is required. It's also better to test when you are in a flare.

Good luck.

 

[WinterWren]

Sorry I don’t have any answers, I just always thought that closing my eyes helped me think more clearly because of all brain power it takes to process visually. The opposite happens to me in a grocery store, I start looking around and immediately my brain shuts down completely.

You describe your cognitive symptoms a lot like I would, and I also have ear pressure and fluctuating head and face pressure. I was planning to try fexofenadine soon so maybe I’ll also be able to engage in a tv show for once, that’d be nice! Skullcap seemed to do that for me at first and it’s said to have antihistamine properties but I really don’t know. It definitely has a calming effect.

 

[Fogbuster]

You can read "Never bet against Occam" by Dr Afrin for lots of info on MCAS. Dr. Afrin is the one that pioneered the MCAS treatment field. I highly recommend reading it.

Doctors could be referred to this paper, also by Dr. Afrin, where Fig 5 and the text following it details the blood and Urine testing along with special handling instructions.
https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

You should check if all the tests listed were carried out by your doctor. Many doctors just test histamine and tryptase but often these are normal in MCAS and there are more tests. Blood for some tests needs to be frozen ASAP and urine chilled quickly, as the half life of some of the things being tested is very short. It's important to mention this to the lab drawing the blood.

Sometimes repeat testing is required. It's also better to test when you are in a flare.

Good luck.

Thanks very much for that paper, it looks very helpful. I bought the e-book version of Never Bet Against Occam a little while back and finally bought the paperback version a week or so ago, and wow, its so much better to go through in physical form. What a book! I just so happened to email Dr Afrin for the first time a couple of hours ago, hopefully I'll get a response sooner or later.

The testing done for me looking for mast cell issues was: Diamine oxidase activity, Urine histamine, Plasma histamine, Histamine releasing Uticaria, Urine methylhistamine, IgE allergy profile 1, so seemingly very thorough. Apart from a bone biopsy, is there any more tests you'd recommend? I've done a tryptase test twice. Fexofenadine has kicked in this evening, so feeling a little more perky! Hopefully it'll work more thoroughout the day. My doc said that I'd need a month of taking Fexo before we can re-evaluate things, is it normal for it to take a little while to fully kick in for peeps with MCAD?

 

[percyval577]

Dear Fogbuster,

I also felt regularly worse after eating, and during some periods I felt good sometimes when having stayed away from eating (mostly by accident).


Anyhow, I want to say that with cognitve issues I discovered a quite surprising influence: A drop of 2.5% vinegar in a drink. This vinegar, as an acid, will reach the nucleuas accumbens where "acid sensitive ion channels" are more dense than in other regions of the brain. And this helps me to concentrate. More vinegar does not lead to such improvement, probably because it is going to be scavanged or whatever (you are often going to feel hot, right?).

It must be said though that the paper that investigated this density only said, that these acid sensitive ion channelals are responsible for enhanced plasticity, so, it might be important to be on a good way. This I am, mainly by a low manganese diet.

As the nucleus accumbens is crucial for drug dependence it might be important to note, that it might be a bad idea to put this drop of vinegar in a beer for example. I did it for one tiem, with a huge and pleasant effect. Aferwards I was not able to concentrate as good as before, but this might have got diminshed anyway, who knows.

 

[wigglethemouse]

The testing done for me looking for mast cell issues was: Diamine oxidase activity, Urine histamine, Plasma histamine, Histamine releasing Uticaria, Urine methylhistamine, IgE allergy profile 1, so seemingly very thorough. Apart from a bone biopsy, is there any more tests you'd recommend?

@Fogbuster Here is a sample order for Quest and Lab Corp in the USA. Doesn't seem like you have done the Chromogranin A and Prostaglandin tests, which are some of the key tests for MCAS. I would focus on seeing if you can get these tests done.

I believe that you need to be off PPI's and anti-inflammatories for 5 days for some of these tests. I've added a couple of links from a quick Google search.

Lab Corp Order
004280 - Tryptase
081315 - Histamine
140848 - Chromogranin A
Link: https://www.labcorp.com/test-menu/22496/chromogranin-a

Quest Order For Interscience
94402 - Prostaglandin D2, Serum, (frozen) @InterScience
94533 - Prostaglandin F2a, Serum, (frozen) @InterScience
10180 - Prostaglandin D2 PG-D2, 24 hour Urine frozen @InterScience
Link : http://www.interscienceinstitute.com/index.php?book/p#17

Quest Order For Mayo
N Methylhistamine , 24 hour urine - Wild to mayo
2,3 -DInor 11 Beta Prostaglandin F2alpha, 24 hour urine - WILD to mayo
Chilled plasma Heparin anti Xa - Wild to Mayo

24 hour urine needs to be kept refrigerated. Blood needs to be frozen immediately for some tests and the lab needs to be told this.

Hope that helps

 

[gregh286]

I had.this problem.
I had crazy facial angioedema on top. Face would be like a basketball. Took 4 days to goto normal size again. It without doubt histamine related.

I think histamine creating leaky gut situation.
Why?? Because angioedema.is leakage in face vessels....why same wouldn't happen in gut wall?
Not matter what you eat you can react cos floodgates open.
H2 blockers....quercetin and the king of all....ketotifen.
Play around with those.
Puree all your food.
Are you eyes puffy or.streamy...
The theohardes products are good but way overprice.

Leaky gut normally worse in morning. You find more reaction to breakfast. Try to avoid food till afternoon.

 

[lazzlazz]

There's a 2016 talk on MCAS by Dr. Afrin here that is excellent. It would be very informative to physicians, if they watched it.

I also copied & pasted some of his slides including the diagnostic criteria (2 different proposals; Afrin favors the one labeled 'alternative proposal) and some from the 2nd half of the talk (most of the slides show a time stamp). Going to take them to my physician.

First half of the talk was background on mastocytosis, gradual recognition of MCAS, biology, etc.

Video is 2 hours; last half hour, he answers questions.

 

[Fogbuster]

I had.this problem.
I had crazy facial angioedema on top. Face would be like a basketball. Took 4 days to goto normal size again. It without doubt histamine related.

I think histamine creating leaky gut situation.
Why?? Because angioedema.is leakage in face vessels....why same wouldn't happen in gut wall?
Not matter what you eat you can react cos floodgates open.
H2 blockers....quercetin and the king of all....ketotifen.
Play around with those.
Puree all your food.
Are you eyes puffy or.streamy...
The theohardes products are good but way overprice.

Leaky gut normally worse in morning. You find more reaction to breakfast. Try to avoid food till afternoon.

Sorry for the delay in response, thanks for sharing a little insight into some of your own story and showing how similar it is to mine. It's awful to know there are others dealing with these invisible but incredibly disabling symptoms, but also validating to know I'm not alone in this. I fortunately don't get puffy or streamy eyes, but do get eye irritation and a heavy pressure in them. But apart from the general auto-immune like symptoms, my worst symptom by a country mile is the lack of ability to think clearly after the flare up.

Fexofenadine is 100% doing something significant for me, but it's becoming increasingly obvious that the dose will need to be increased from one a day to two. On two separate occasions now I've experienced what feels like a sort of magic bullet affect from it, well at least compared to any other drugs or supplements I've tried in the past. Very encouraging news but also definitely a good test of my mental resilience, as it's truly depressing seeing how awful my cognition is when the short lived but much improved effect from fexo fades away.

I'll be buying Ketitofen very soon. Unless I've missed it, there doesn't seem to be an easy way of getting the eye drops in the UK without buying from the US off ebay.

Regarding your statement about leaky gut being worse in the mornings, where did you learn this? And why the need to puree all food? Not criticising just genuinely curious.

I might eventually crumble and go for theoharides' product, but I've also seen a similar (but cheaper) product from mifarma which is a combo of quercetin/luteolin at 750 & 150 milligrams per capsule, instead of 40 of Q & 100mg of luteolin with neuroprotek. Its nearly half the price with the current discount. Just some food for thought.

Are you symptom free these days? What's your current treatment plan?

Cheers.

 

[Fogbuster]

There's a 2016 talk on MCAS by Dr. Afrin here that is excellent. It would be very informative to physicians, if they watched it.

I also copied & pasted some of his slides including the diagnostic criteria (2 different proposals; Afrin favors the one labeled 'alternative proposal) and some from the 2nd half of the talk (most of the slides show a time stamp). Going to take them to my physician.

First half of the talk was background on mastocytosis, gradual recognition of MCAS, biology, etc.

Video is 2 hours; last half hour, he answers questions.

This is super useful, thanks very much. Are your symptoms similar to mine?

 

[talkinghead]

I have similar symptoms as you're describing, alongisde some others. It's not strictly tied to eating, but many times it gets worse after eating anything.
How are you now?
Is fexofenadine still working? Have you found somehting else?

 

[cb2]

@Fogbuster are you still taking the Fexofenadine ? I tried some but it made me so very sleepy. i actually slept great! how are you able to tolerate it? how are you doing? thank you

 

[Bjjpapi]

I felt awful after eating for a long time, it was like being drugged most times and the brain fog was intense. I still have brain fog, fatigue, executive function issues but I’m glad to have gotten rid of the “I just got drugged” feeling every time I ate anything. Turns out the allopurinol I was taking for gout made me have that reaction.

like percyval, I also found that adding some vinegar to my water bottle helped some.

Hope you’re doing better and have found some answers