Hello Everyone


I am so glad to have discovered this forum.  I have been reading pretty much non-stop since I found it.  I have just joined and wanted to introduce myself and take this opportunity to explain why I am interested in this forum.

My history is as follows:

In 1991, after a visit to Asia for the first time (I now live there full time but spend summers in SW Florida), I became very ill with a bad bronchial infection that resulted in my hospitalization for 10 days when I returned to Canada.  The doctors had a very hard time clearing my lungs.  Eventually I was well enough to be released.  Following that episode, I developed high blood pressure and very sensitive, twitchy lungs.

Over the last 20 years, I have experienced a variety of symptoms/illnesses:

-high blood pressure - currently controlled by medication but I can have huge swings from high to quite low (<100 systolic)
-easily susceptible to infections which rapidly affect my lungs causing wheezing and require steroids (oral) and sometimes antibiotics to resolve.  The exacerbation in symptoms can occur over a period of a few hours
-reflux
-esophageal spasms (currently absent provided I don’t eat or drink extremely cold food/drinks)
-chest discomfort/pain
-flushing, especially after eating foods that I now know are high in histamine such as fermented foods, cheese, alcohol, soy products.  This can also occur in response to stress or strong emotions
-frequent diarrhea, especially after eating foods that are high in histamine.  This can be urgent and explosive at times (sorry for TMI!) My GP thought this was likely IBS.
-frequent nausea - this will often wake me in the middle of the night and then persist for a day or so.  I often feel the next day that my esophagus is sore or irritated
-bad headaches that will wake me in the middle of the night or that come on during the day, usually after I have eaten something
-palpitations
-swelling.  This requires further description.  The very worst swelling was in my feet and lower legs - to the point that the only shoes I could wear were flipflops.  The swelling would also involve my abdomen and sometimes, my sinuses. I could literally feel these areas swell (or increase in swelling) after eating, particularly if the foods were high in histamine.  This became particularly noticeable after abdominal surgery as I can feel the incision get tighter and tighter.
-ongoing sinus congestion despite Allegra, Xyzal, Astelin, QNasal, (replaced Rhincourt which I used for years), and Singulair
-wheezing and asthma when I get a cold or am exposed to know allergens like cats or dust mites.  It will almost instantly descend to my chest necessitating treatment with prednisone and/or antibiotics.  It will also usually affect my sinuses
-sudden feeling of energy draining from me, sometimes repeatedly in a day, leaving me feeling like a 'floppy doll'.  I often cannot identify a specific trigger
-easy bruising that last a long time
-rapid onset of flu-like feelings - achy etc - but is not the flu as it disappears after only a day or so
-watery eyes (despite laser eye surgery which often leaves eyes dry).  If I lie on my back, my eyes run as though I am crying
-after a bad day or a reaction, I will often feel 'hungover' the next day although I have not drank alcohol in years
-sometimes when the headache comes on during the day, I will feel as though I cannot focus properly.  This feeling can also occur even in the absence of a headache
-metallic taste in my mouth
-sometimes completely unexplained feelings of anxiety or agitation for no apparent reason
-for the past year, and despite all the antihistamines listed above, I have had such severe swelling in my sinuses that I have been diagnosed with eustachian tube dysfunction and have not been able to 'pop' my ears for more than a year.  I saw an ENT who determined that the cause of the problem was the severe swelling and his recommended treatment was to put permanent grommets (like tubes for kids) in my ears.  I declined pending further consultation with my allergist
-insomnia - I have a very hard time falling asleep and the quality of my sleep is not great.  I have discovered that sufficient sleep (I mean at least 7 to 8 hours) is essential to keep the swelling in my legs down
-back pain arising from spondylolisthesis (grade 1 at L4, L5)
-joint and muscle pain, especially after exercising.  This is not as a result of being unfit; I am very active and normally work out 5 days a week and often play tennis when I am able.  I
-delayed gastric empyting (observed at Mayo in Rochester but they could not determine a cause)
-increasing pain and stiffness in my hands - likely arthritis in the joints (I am only 50).  I have also developed in the last year signs of Reynaulds syndrome, something my mother suffered from.  This has developed in the last year.  My fingers will go deathly white from the tips to about the middle of each finger after exposure to cold temperatures, sometimes even just from air conditioning in a store
-I an extremely intolerant of changes in temperature.  My friends joke that after I moved to Asia where it is usually very hot and extremely humid, I can only tolerate a very small range of temperatures in which I am comfortable.  I often complain of being either too cold or too hot – I feel a little like Goldie Locks trying to find a temperature that is ‘just right’.  I previously lived in Southern Ontario and was able to adapt to temperature changes relatively well
-frequent bouts of dizziness or vertigo.  This started after I had swine flu three years ago but continues to occur.  I have been given a mild benzo that is not available in the US (lexotan) to use when this occurs as the doctor feels it is an inner ear issue).  I have had a consultation with a neurologist who can find no explanation
-severe histamine reaction to an antibiotic while hospitalized for surgery 2 years ago.  Interestingly, the reaction was apparent to me immediately with the first dose but was tolerable.  I think because I had been given a large dose of prednisone before the CT scan of my chest that revealed double pneumonia that the steroid provide some ‘coverage’ when I was given the antibiotic.  It still made me feel like a floppy doll, I could not raise my head properly and had trouble focusing and just felt unwell.  24 hours after the scan, when they gave me another IV dose of the medication and after the steroids had worn off, I had an instantaneous reaction when the medication was injected into my IV including elevated heart rate, elevated BP, shaking, redness and flushing and feeling very unwell.

I have had many tests for each of the symptoms described above: cardiac CT exams of heart, abdomen and brain, gastroscopy, endoscopy, colonoscopy.  In addition, I traveled to Mayo in Rochester from Hong Kong a few years ago, especially to seek an explanation for my very swollen legs and feet and my gastro symptoms.  I had many, many tests while there includings a lymphoscintigram (the lymph system in my legs was fine), a test to see if there was a problem with the venous return in my legs (there wasn't), an abdominal scan to see if there was a mass to explain the swelling (there wasn't) and various heart tests.  They did some testing for the severe reflux but I could not tolerate a 24 test with a tube through my nose and down my throat as I could not stop gagging despite all efforts so they could not confirm a diagnosis of GERD.  They detected delayed gastro emptying and were suspicious of achalasia but ruled that out after a swallowing test.  I saw the allergist at Mayo as I was suspicious that the swelling in my feet and abdomen especially was the result of a food allergy.  The doctor did some environmental testing but refused to test for food as my symptoms were not typical of food allergy as I had never had hives.  He determined that I am allergic to cats (I knew that), dust mites and horses.  I avoid all of these items.  

In short, I was left with a multitude of symptoms with no cause despite many investigations.  Finally, after two very bad reactions while traveling last year (rapid onset of flu-like symptoms lasting about a day or so, once while traveling in China and again while in Europe) as well as the reaction to the medication in hospital, my GP commented that they sounded like a severe histamine reactions.  By that point, I was already on xyzal, rhinocourt and a proton pump inhibitor.  As a result of that conversation, I did some research and discovered the concept of Histamine Intolerance.  With my doctor's knowledge, I started a low histamine diet and saw a marked improvement in many but not all symptoms.  I then saw a very good allergist in Florida while on vacation last year who added Allegra, Singulair and Astelin.  He also did blood tests to test for a variety of foods and they were all negative.   Again I saw further improvement after adding the extra antihistamines and the singulair but still experienced some of the symptoms on an ongoing basis.  My GP in Hong Kong recently changed my PPI to famotidine so that I would also have the benefit of an H2 blocker.  When I saw The US allergist again a couple of weeks ago, he was surprised at some of the symptoms I still experience despite the medications that I am on, including ongoing nasal congestion as well as dizziness and feeling faint or like a floppy doll.  On the way to Florida from Hong Kong, we stopped in two cities in Canada for a few days.  Both times I experienced the sudden onset of severe flu-like symptoms that disappeared after a day or so.   I continue to particularly react to foods with high histamine content - for example, pizza makes me sick for days.  I do not eat any Chinese food as the soy and other sauces make me flush badly.   As a result, the allergist prescribed an Epipen and ordered two blood tests - tryptase and blood histamine.  He told me he wanted to see if there was perhaps a mast cell disorder at play or even mastocytosis.  I started to do some research and came across your forum.

I discovered, as you can imagine, that most if not all of my symptoms, can be attributed to either Mast Cell Activation Disorder or Mastocytosis.  I also received a telephone call from the doctor's office and the nurse advised me that while my tryptase was in the normal range (she didn't say what it was) that my histamine was high. They use Quest labs and the reference range at that lab is .1 to 1.8.  My histamine level was 4.3.  The doctor was concerned about this and although currently away, he plans to take my file to his mentor when he returns and I see him again on August 3rd.  What is particularly odd is that I was on all of the various antihistamines plus singulair etc when the testing was done.  I had also recently (the day before) finished a course of prednisone for a chest/sinus infection.  Even more interesting (at least to me) is that I was not feeling all that bad on the day they did the blood tests.  I wonder whether the results would change if I was feeling unwell.

Anyway, sorry for the extremely long introduction but I would love to hear from anyone who might have some comments on the various symptoms and/or some recommendations for my next appointment with the allergist on August 3rd.

Many thanks
Guantai

Guantal,
Thank you for sharing all of your history. I think you doctor seems to be on the right track. I am setting up an appointment to see a mast cell doctor in South Carolina. I'll share whatever I learn. We are all a bit different but all seeking treatment and diagnosis. Keep us informed. There are some experienced folks who will chime in more.
Angelloz

Welcome Guantal!
I am positive this site can help guide you to work with physicians to sort out a diagnosis. The information is plentiful!

Sweet Tea

Thank you all for taking the time to read my 'story' and for your warm welcome.  

I posted under the general thread yesterday that I was finally diagnosed by my allergist with Mast Cell Activation Syndrome.  He has added Gastrochrome and Zaditen to my medication list and has recommended a medicalert bracelet which I will order.  I was lucky and was able to find a compounding pharmacy that can get me the Zaditen by early next week.  It seems from what I have read that it can be a huge help.  The allergist has also recommended I see Dr. Castells and will send her a referral.  Does anyone have any idea of how long it takes to get an appointment with her?  I live in Asia and will be leaving the US on August 25th.  I will be back in November for a while.  Should I try to see her before August 25th or is it more likely I will see her in November?  I know I need to call her office to get an answer but I am just trying to get my ducks in a row over the weekend asap so that if I can see her soon, I will be ready to go (I am in SW Fla at the moment).

Thanks all.