Fogbuster
Senior Member
- Messages
- 269
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!
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!
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