Mystery condition: I react to ALL Food, herbal supplements and spices - Why?

[Dufresne]

Have you tried a rotation diet? It can be really helpful. It's saved my ass.

Sorry if you already mentioned it in the thread, I can't go through it right now.

 

[valentinelynx]

was reading about people having good results with a antihistamine called Ketotifen in the pill form heard it works for food allergies and ibs and helps to heal leaky gut also it is a mass cell stabilizer just throwing that out there for ones that may be suffering from food and want to google it and read up on the info they can find i think the US brand name is Zaditen and there is research where they had positive effects with food allergies ect

Ketotifen is only available commercially in the U.S. as an eye-drop. It is indeed a mast cell stabilizer. Those who are being treated for MCAS (Mast Cell Activation Syndrome) often get prescriptions for a compounded oral version, which is typically prescribed as 1 mg BID. It can cause drowsiness.

Personally, I believe it helps with food reactions. I forgot to take my evening dose the other day and was sniffling and dripping after dinner like crazy. Doesn't end my reactivity to smells, perfumes, etc, but I think it helps some.

 

[Jerry C]

yeah u can order the pills overseas u can get it without a script alldaychemist and a few other places has it also they had the pill form on ebay yesterday too there was only one listing and it was ending last night so not sure if they will relist but it was there

 

[maryb]

Ketotifen does cause drowsiness for me so be careful, and that's at half the prescribed dose. Hope it helps. having reactions to everything under the sun is just the worst thing.

 

[Jerry C]

I have had this issue for over 4 years now and am totally at my wits end with trying to work out what is wrong with me. Mainly because my cognitive impairment (brain fog) is so chronic that I am completely unable to think and process any thought. My working memory is completely shot also.

When I ingest foods and other chemicals, immediately a stress response goes off in my body and sets off what I can only describe as my wired symptom. It's an uncomfortable and mildly painful numb tingling sensation (very like pins and needles in feeling) streaming through my body as if something biochemical has been triggered and released into my blood stream after ingesting the chemical/s. My pupils dilate and it activates my nervous system. It puts me in a state where I feel stressed and on edge, whilst making me feel crappy. It impairs my cognition even more than it already is. The more extreme my wired symptom/stress response is, the more stressed I feel and the more extreme my symptoms get.

• 
  Worst offenders? (In order)
  
  
  • Cigarettes
  • Marijuana
  • Histamine rich food
  • Spices
  • Alcohol
  • Caffeine
  • Gluten/Yeast
    
    
    
    My symptoms:
    
    
    Sound/light sensitivity, popping ears, shortness of breath, hypertension, twitching/spasms, shaking, sinusitis, aching joints (wrists, ankles, knees and shoulders**), - Clicking/popping joints (especially my knees, which pop every time I walk), Regular raw pain feeling in stomach (When you peel off a scab and there's that shiny bit of sensitive skin underneath). That's what it feels like when i press down on stomach., chronic brain fog and fuzzy vision (translucent out of signal black/white tv fuzz) and getting hypoglycaemic very easily. Literally half a teaspoon of Sugar is enough to set off the wired symptom.
    
    
    • My worst symptom:
      
      
      Chronic Brain Fog - I have read many, many cases of people experiencing this symptom but nothing to the extent of how extreme and debilitating mine is.The extent of how chronic and debilitating it is, is something which my friends/family/doctors still cant quite comprehend. It is so chronic I am completely unable to think, access any thoughts or memories. I can't process more than 4-5 words in a sentence, completely unable to process a paragraph, sit back and think about it, it's not a matter of hazy thinking, I am completely unable to think AT ALL. The best analogy I can find is is it's like solitary confinement in the mind, no activity, just dead space.My quality of life and the boredom I experience is frightening. Completely unable to process anything properly - books, films, music, conversation, again just dead space, no escapism.
      
      
      
      What has helped with my "condition"?
      
      
      
      Diazepam - reduces my "reaction" to things significantly to a point where I could almost live a manageable/mildly functional life with it. Because there's much less wired symptom it helps my ability to process better and appear more functional in everyday situations, but doesn't improve the BF.
      
      
      
      Cold air exposure - If im very symptomatic being outside for 15 minutes or more significantly improves my wired symptom, ability to process information and general symptoms like sinusitis. I have heard cold air exposure reduces glutamate exitoxicity - so something is triggering it, but I'm not exactly sure what it is...
    • 
      
      
      Elemental diet - Being on this for 8 days reduced my reaction to normal foods (gluten, alcohol, ready meals & dairy based foods) considerably and normalised my stress response and improved BF by about 40%. I felt very calm and zen after and was MUCH better at handling stress because the stress tap wasn't on anymore. Eating "normal" foods for a couple of weeks made me go back to square one again though.
    
    Thanks for reading, any ideas are truly welcome.
    
    Best,
    J

You Still Doing Good Fogbuster ?

 

[Eeyore]

@Fogbuster - This sounds like a clear case of MCAS or MCAD + Ehlers-Danlos (probably type 3) giving you a degree of MCS.

If you are anywhere near the northeast of the USA, I know an absolutely brilliant doctor who understands this stuff and would recommend her without reservation. There must be good docs elsewhere too, but I was truly amazed at the level on which she could converse biochemically. (She's an MD/PhD). If interested, PM me - I won't put doc names on the boards w/o explicit permission.