I have been diagnosed with POTS (postural orthostatic tachycardia syndrome). This was after a problem with an abcessed gangreene appendix and many antibiotics. More recently, I have developed extreme sensitivity to meds, foods, and chemicals. Some of my triggers include shampoos, laundry fabric softener, antibiotics, peanuts (even though I tested not allergic to them), spices, and many others.

I am being tested for mast cell activation disorder. My 24 hour urine histamine was normal. I am waiting for results on tryptase. The allergist I went to suspects I have MCS. From the reading I've been doing it sounds like food additives and preservatives are culprits for MCS, not the foods themselves. My worst reaction to date was to peanut oil. Does this fit the definition of MCS?

Also, my main symptom is a fast heart rate. Sometimes I wheeze, feel weak or faint, and have brain fog.

Thanks for reading!

Hi Sorry to hear what you are going through and sorry I don't have any answers either. You sound very much like my daughter and we are still trying to figure it all out.

Could I ask you if you are in the Uk and if it is an NHS allergist you are seeing?
I haven't heard of mast cell activation disorder so thanks posting as it is something we will ask the allergist about. So far no one has managed to fully explain my daughters symptoms. She has been diagnosed with Oral Allergy syndrome and Upper airways obstruction. She also has the same triggers as yourself and probably others too. She has had CFS for 5 1/2 years and in the last 6 months MCS.

Has you Allergist done RAST testing? My daughter didn't show allergy to hazel nuts on the skin prick test but did on RAST testing.

Hope you get some answers soon.
Judy

Hi Judy,

The doctor who told me I might have MCS is an allergist/immunologist. I have had the blood allergy tests done (I think that's the RAST, right?)

I live in Ohio. The doctor I see is Jonathan Bernstein in Cincinnati.

I have a good friend who was recently diagnosed with a mast cell disorder. I met her online and she lives in South Carolina. Her mast cell doctor is Dr. Afrin. Here is a link to an article recently written by him about mast cell disorders.

www.jhoonline.org/content/pdf/1756-8722-4-10.pdf
I hope you get some answers soon. It is very frustrating not knowing what's going on.

Hi both,

jenwic - Yes the standard allergy blood tests are RAST. They look for IgE antibodies to various substances. IgE antibodies being the type which cause immediate and often severe allergic reactions from hayfever to anaphylactic shock.

In answer to your original post and as Judy has said, it is common for people to react to a seemingly everything including chemicals, foods and medications. It sounds like you have the dubious honour of being able to call yourself a 'Universal Reactor'. I hope you are able to find some answers and stability in your symptoms soon so that you can start to move forward. Having overcome MCS myself (albeit without the food issues) the best advice I can give you is to do as much reading on the subject as you can, talk to others in a similar position to learn all the best tricks and treatments...and never give up hope. It is great for starters that an immunologist diagnosed you with MCS as I simply got sent to a psychiatrist with a note that basically said "thinks he is sensitive to chemicals"!

Judy - Interesting what Jen has shared about mast cell disorders as Sam did once tell me she felt mast cells were involved with her issues after she'd been doing some research online. I'm sure she'd like to see Jen's link.

Take care both of you.

I'd suggest getting a CDSA test (comprehensive digestive stool analysis). When you take massive amounts of antibiotics, it kills off everything in the gut, making it ripe for anything to set up camp in there. Some parasites and bacteria can mimic food allergies (like you eat a food that never gave you problems before and then you have all these bad reactions). It might not be food allergies at all.

The CDSA test can be paid for by some insurance companies, but you might have to pay for it on your own. You just don't know what's going on in the gut, until you get it tested. Conventional drugs can destroy the gut sometimes.

Yes, food additives can be a problem, but there might be something else going on too, especially with the antibiotic history.

Also, MCS is not an allergy, but you can have allergies in addition to MCS. You can also have MCS and no allergies at all. Here's a paper by Grace Ziem about Allergies and Chemical Reactions. www.mcs-america.org/ziemallergiesmcs.pdf

May I ask how you eventually found out what was going on with your appendix? Were you in constant pain? Did it take a long time to diagnose? How was it diagnosed?

At health-quest.proboards.com/index.cgi?boa...isplay&thread=70

is a list of substances, which are able to activate some of the TRPV receptors.
TRPV1 (former vanilloid receptor) is for example activated by hot, pungent substances like capsaicin in chillies or substances in pepper.
A few years ago Pall took a closer look at that kind of receptor and he wrote an article about it stating that other chemicals like solvents are able to activate it, too.
TRPA1 is activated through aldehydes and substances in garlic, onions, cabbage, mustard oil....
TRPV3 is activated through essential oils which you may find in herb, spices and fragrances.

These kind of receptors are find in nearly all areas of the body and the symptoms are pain and inflammations. So there is a wide range of symptoms possible.

A good article is at
physrev.physiology.org/cgi/content/full/87/1/165?ck=nck
Physiol. Rev. 87: 165-217, 2007; doi:10.1152/physrev.00021.2006
0031-9333/07 $18.00

Transient Receptor Potential Cation Channels in Disease
Bernd Nilius, Grzegorz Owsianik, Thomas Voets and John A. Peters