I hvae been reading from this site for awhile.  I am not sure if I have mcas, because as I read through this site, I feel like some of these things I have but not as bad at all.  But then I have gone from not being able to eat, and major headaches and others till now I am doing a lot better since taking an h1 h2 blocker.  My question is does any of my symptoms seem to be like mcas, or am I way off?  I just wonder with how h1 and h2 help so much.  Also is it worth trying to get a dx, when it is difficult?  wouldnt it be easier to treat it like I do have it? is the only difference that the doctors would start me on a mast cell stabilizer or is there more? and if so can they just put me on a mast cell stabilizer and see how i do?  I will just post my most recent dr.s dictation at the mayo and my lab results.  They have most of my symptoms in their dictation.  any help would be apprciate.

CHIEF COMPLAINT / REASON FOR VISIT:
Nausea, vomiting, and abdominal pain; question regarding possible
mastocytosis.
Attending staff is Dr. Lewis.
HISTORY OF PRESENT ILLNESS:
Ms. Lehnardt is a very pleasant 32-year-old female with a previous history
significant for Ehlers-Danlos syndrome, POTS, factor V Leiden mutation who
now presents with GI symptoms as a referral from the Neurologic Service of
Dr. Goodman for the question of mastocytosis.
Much of the details regarding previous evaluation can be found in Dr.
Goodman's note dated 05/14/12 as a Neurology consult. We discussed the
following today with Ms. Lehnardt.
1. Episodic flushing.
She has had episodic nausea, flushing, early satiety, palpitations, chest
tightness which began within three to four bites of the intake of food. This
had been quite consistent with each meal beginning around 2009. She also had
associated headache on random sides, but consistent locations of temporal and
jaw pain with these episodes. She denied any significant stool change that
was consistent with these episodes. These persisted until approximately three
to four months ago when she tried Benadryl, as well as Zantac which
significantly decreased these episodic occurrences. She has had improvement
since then, but has been off these medications for the past week and has
noted significant worsening of these episodes. She will occasionally have
abdominal and back pain with these episodes, although this is more associated
with her diarrheal episodes. She denies any rash, syncope or presyncopal
events during these particular episodes.
2. Syncopal episodes.
She has had three syncopal episodes in the past year. She also notes these
are within one to two hours of food intake and associated with a
diarrheal-type episode. The diarrhea episode occurs once every two months and
is not always associated with the syncope, but can progress to this. Overall,
these events she describes as occurring one to two hours past eating with
again nausea, flushing, with progression to back pain or abdominal pain or
epigastric burning sensation which is then followed by episode of explosive
diarrhea, greasy in nature with a foul stench, tremors, decreased heart rate.
When she feels these coming on she will go to the bathroom and sit on the
toilet. She will then get very weak and pass out for a time frame less than a
minute. When she comes to she is completely with it. She finds these are most
consistent with heavy meals. She is not sure if her blood pressure is taken
during these episodes. She again denies any rash, breathing difficulties,
throat closure during these episodes when she does have syncope. Immediately
following the diarrheal bowel movement she feels very well and much better
and describes no other lingering adverse symptoms.
3. Rash.
On occasion she has what she describes as a blistering rash on her upper
chest associated with pruritus, but no pain. By her description it sounds
clear vesicular-type rash with no coalescence and no other significant
abnormalities.
4. Skin sensitivity.
She has had skin sensitivity since childhood. She promotes even the exposure
to water can cause pruritus.
5. Pruritus.
She is often afflicted with pruritus, at times even without instigation. She
has noted that multiple things cause skin sensitivity, but denies any rash
appearance with this pruritus. As mentioned above, even water exposure on her
hands. She has not noted any specific triggers other than contact such as
heat or cold, massage, or friction.
As far as other previous history with respect to mastocytosis, she promotes
that oxycodone caused some nausea, neck pain, and headache with some
dizziness, but no cutaneous-type manifestations. Morphine caused a local
reaction when she received IV morphine with an erythematous-type rash. She
does take hydrocodone without any effects. She has had no previous
significant exposure to aspirin, but has previously tolerated NSAIDs. Muscle
relaxants, antibiotics cause no adverse effects. She did have some alcohol
consumption as a teenager and did feel sick which she thought was independent
of how much alcohol she drank. She has not had this for many decades.
Additionally, she brings up a burning sensation with intercourse. This can
occur on initiation of intercourse or up to the orgasmic portion of
intercourse. This is also associated with flushing. She has been evaluated in
the past and this burning sensation continues despite barrier protection,
lubrication, creams. She has not been previously tested for allergy to semen.
CURRENT MEDICATIONS:
1. Hydrocodone p.r.n. for muscle pains.
2. Zofran.
3. Phenergan p.r.n. for nausea.
4. Benadryl 50 mg twice a day which she has stopped for 7 days due to
possible testing.
5. Zantac daily. Again, she has stopped this for 7 days for possible testing.
6. Cyclobenzaprine one to two times a month.
7. Multivitamin.
8. B-Complex vitamins.
ALLERGIES:
No known drug allergies.
PAST MEDICAL/SURGICAL HISTORY:
1. Ehlers-Danlos syndrome.
2. Postural orthostatic tachycardia syndrome.
3. Hysterectomy, cystocele repair 2006.
4. History of malpositioned gallbladder.
5. Factor V Leiden mutation.
6. Shingles in 2010 of the right neck.
SOCIAL HISTORY:
Tobacco never. Ethanol as a teenager, since discontinued once she became
pregnant. She denies any illicit drug use exposure. Her occupation has mainly
been at home taking care of her kids. She had previously exercised quite a
bit, but more recently has been more bedridden secondary to symptoms. She has
no significant travel outside the country, but has lived in several places
throughout the country secondary to her husband's occupation in the military.
She currently lives in Georgia in the Augusta area and when she was diagnosed
and first had symptoms as described above, she was living in Washington
State. She is originally from Idaho.
FAMILY HISTORY:
Her mother had rheumatic fever. Dad had prostate cancer. Siblings had
symptoms of irritable bowel syndrome, as well as GI ulcers. She has five
kids. One daughter has asthma and allergies. Her son has asthma. Another
daughter had a six-month run of an undiagnosed fever associated with
lymphadenopathy, pruritus, and a rash on her back with a choking sensation,
elevated inflammatory markers. This did resolve and she has had persistent
pruritic-type sensations on her shoulders. She had these symptoms between the
ages of 4 to her current age of 9.
REVIEW OF SYSTEMS:
A comprehensive 14-point review of systems was reviewed with the patient, as
well as in previous dictated notes with Dr. Goodman and is positive for that
which is indicated in the history of present illness. In addition, she does
describe weight gain of approximately 7 pounds in one day and then an
additional 8 pounds in two weeks recently. No fevers or chills, but she
describes her temperature as constantly low-grade and 99 Fahrenheit range.
She also has some occasional chest tightness not associated with breathing
discomfort, but it was associated with pain in her bilateral lower chest with
deep inspiration. This she treated by lying down on her back and putting her
hands over her head for about 30 minutes and it would eventually resolve.
PHYSICAL EXAM:
Vital signs: Height 155.9 cm. Weight 53 kg. Temperature is 36.9 degrees
Celsius.
General appearance: She is a very healthy-appearing young female who appears
her stated age and does not currently appear toxic.
HEENT: Extraocular muscles are intact. Pupils equal, round, and reactive to
light. Sclerae and lids are unremarkable. Tympanic membranes are visualized
bilaterally and normal. Oropharynx demonstrates no significant erythema,
tonsillar hypertrophy, postnasal drainage, or dryness. Nasal mucosa is pink
and moist.
Neck: No masses or nodules.
Lymphatics: There is no lymphadenopathy in the suboccipital, cervical,
supraclavicular areas.
Cardiovascular: She is tachycardic, regular. There is no murmur, rub, or
gallop auscultated.
Respiratory: Clear to auscultation bilaterally. No wheezes, crackles, or
rales.
Abdomen: She does describe some discomfort on deep palpation, but denies
specific tender spots. Bowel sounds are normal. There is no palpable spleen
or liver tip. No guarding or rebound.
Back: No spinal tenderness.
Extremities: No edema is noted. No clubbing or cyanosis.
Skin: Upon scratching her skin in areas of normal-appearing skin, as well as
those with moles, she does have erythematous response with no overlying
blistering in both areas consistent with dermographic-type reaction. Other
than freckles on her face, as well as moles mainly on her arms, there are no
significant dermatologic pathologic findings.
IMPRESSION/REPORT/PLAN:
Laboratory studies including a CBC, sed rate, electrolyte panel, BUN,
creatinine, liver function tests, thyroid were all within normal limits.
Autoimmune studies up to this point are negative.
Recent autonomic reflex testing did show evidence of POTS.
Assessment/Plan:
1. Episodic flushing associated with nausea, vomiting, and abdominal
discomfort.
2. Episodic diarrheal episodes associated with occasional syncope without
respiratory compromise during these episodes.
3. Pruritus.
4. Dyspareunia.
5. Blistering rash on upper chest; currently not present and not located
anywhere else on her body when it occurs.
6. POTS.
7. Ehlers-Danlos.
8. History of factor V Leiden.
At this point, her overall symptomatology does have some
suggestions of
mastocytosis. Studies are currently pending with tryptase, as well as 24-hour
urine studies for prostaglandin. Other considerations given her dermatologic
findings and underlying GI symptoms are celiac disease. She has been
evaluated in the past for serotonin-type producing tumors, as well as
catecholamine-producing tumors. VIP-producing tumors would also be something
to consider for the evaluation process.
Plan:
1. Follow up on tryptase level.
2. Follow up on prostaglandin 24-hour urine test.
3. Will add on N-methylhistamine to the urine 24-hour.
4. Additional tests to evaluate for other possible contributing conditions
including a gastrin level, vasoactive intestinal polypeptide, parathyroid
hormone, gliadin antibodies, endomysial antibody, and tissue transglutaminase
antibody.
5. Consider should there be evidence of mastocytosis, further evaluation with
bone mineral density, skeletal survey, and bone marrow biopsy.
If her tryptase level, N-methylhistamine urine or prostaglandin levels do
come back elevated, will consider further workup for underlying mastocytosis.
If all three of these are normal, it is very unlikely that she has
mastocytosis.
The above was discussed with Dr. Lewis who will provide a staff note
regarding the encounter. I will continue to follow up with the
above-mentioned studies.

My note is a staff note on the resident's note. The resident is Dr. Kidd.
REFERRAL SOURCE:
Dr. Brent Goodman.
CHIEF COMPLAINT / REASON FOR VISIT:
Rachel Lehnardt is a 32-year-old young lady with an autonomic neuropathy/POTS
referred to us by Dr. Goodman to evaluate for possible mastocytosis.
HISTORY OF PRESENT ILLNESS:
Dr. Kidd and I have reviewed Dr. Goodman's extensive and detailed notes of
the Neurology consultation performed 05/14/2012 and we have had an
opportunity to talk with Mrs. Lehnardt and examine her today. There is no
family history of mast cell disease. She has a passing awareness of it. To
the best of her knowledge she has not been screened for it in the past.
Currently we are awaiting a tryptase value and a 24-hour prostaglandin value
as well as additional 24-hour urine studies. She also has had significant
problems with her gastrointestinal tract. She has not been diagnosed to have
a disorder like celiac disease or inflammatory bowel disease and although she
has had an EGD and colonoscopy to the best of our knowledge they probably did
not do special mast cell staining. She also gets a blistering type rash on
her chest that is intensely pruritic. She has never seen a dermatologist
about this. The distribution would not be classic for a dermatitis
herpetiformis. There is no known family history of celiac disease.
She also relates that she has some burning dyspareunia even at the very onset
of intercourse at times. She may have some flushing with intercourse. Her
vagina seems highly intolerant of most lubricants so they are trying just
water at this point. Condoms have not been tolerated presumably because of
the lubricant intolerance. She has had symptoms regardless of whether it is
pre or post ejaculation of her husband. She is aware of the entity of semen
sensitivity.
She has not had known difficulty with nonsteroidals. She has had some fairly
usual sorts of side effects with narcotics, has not really consumed alcohol
since a teen. It did trigger a variety of unpleasant symptoms when she did
drink it.
For the remainder of the history of present illness, past medical history,
current medications, drug allergies, social history, family history and
review of systems, see the notes of Dr. Kidd and Dr. Goodman.
PHYSICAL EXAM:
General: She appears well and in no distress.
Integumentary: She is blond and fair skinned. She has dermatographism. No
obvious urticaria pigmentosa or other cutaneous form of mast cell disease.
No Darier sign.
Head: Normocephalic, atraumatic.
Eyes: No significant abnormalities of lids or conjunctivae.
Ears: External ears, auditory canals, tympanic membranes unremarkable.
Nose: External nose and anterior nasal passages unremarkable.
Mouth and Throat: Lips, tongue, gums, teeth, posterior pharynx and mucosa
unremarkable.
Neck: No significant lymphadenopathy, thyroid abnormality, or salivary gland
abnormality.
Lungs: Clear to auscultation bilaterally with good air movement and normal
respiratory effort at rest.
Cardiovascular: Auscultation of heart sounds unremarkable. Radial pulses
full and symmetrical. No cyanosis, clubbing or edema.
Abdomen: No hepatosplenomegaly.
Derm: As above.
IMPRESSION/REPORT/PLAN:
1. History of POTS and Ehlers-Danlos syndrome along with some cutaneous and
gastrointestinal symptoms and history of syncope and unusual blistering rash.
She will be seen in GI by Dr. Burdick. We took the liberty of adding some
celiac serologies, a VIP and gastrin, also a parathyroid hormone level. With
regard to mast cell disease, we will await the results of the tryptase and
24-hour urine prostaglandin value. We will also make sure that she has
24-hour urine N-methylhistamine performed. We discussed that if any of the
mast cell markers are elevated we would want to pursue further investigation with
studies such as a bone density to look for osteopenia/ osteoporosis, a
whole-body bone scan to look for sclerotic and lytic lesions and
consideration for a CT scan of the chest to rule out adenopathy and
hepatosplenomegaly, and then we talked about the gold standard which would be
a bone marrow biopsy and aspirate looking for clusters of atypical mast cells.
We talked in broad terms about mast cells, anaphylaxis, mast cell activation
disorders and mastocytosis. At this point in time I have not put in request
for the imaging or the bone marrow and would await the results of various
labs and comments from my colleagues. I have asked her to call my office in
about a week so I can review all of that information at that time and then
advise her whether I think further evaluation for mastocytosis would be
warranted or indicated.
She has had an opportunity to ask questions and indicates her understanding
of the plan and the approach.


labs
Adrenal (05/18/2012 8:48 AM MST)
Name Result Normal Range
Norepinephrine, Supine 605.0 pg/mL 70 - 750 (Supine)  
Epinephrine, Supine 19.0 pg/mL See Comment  
Dopamine, Supine 16.0 pg/mL See Comment  
Norepinephrine, Standing 1923.0 pg/mL 200 - 1700 (Standing)  
Epinephrine, Standing 56.0 pg/mL See Comment  
Dopamine, Standing 28.0 pg/mL See Comment  

General Chemistry (05/16/2012 1:08 PM MST)
Name Result Normal Range
Ca 10.2 mg/dL 8.9 - 10.1  
Phos 3.9 mg/dL 2.5 - 4.5  
Creatinine 0.8 mg/dL 0.6 - 1.1  

Parathyroid (05/16/2012 1:08 PM MST)
Name Result Normal Range
PTH Serum 25.4 pg/mL 15.0 - 65.0  

General Chemistry (05/16/2012 1:08 PM MST)
Name Result Normal Range
Estimated GFR > 60 mL/min  

Special Chemistry (05/16/2012 1:08 PM MST)
Name Result Normal Range
Gastrin, Serum 25.0 pg/mL  

Immunology (05/16/2012 1:08 PM MST)
Name Result Normal Range
Tissue Transglut IgA Ab <1.2 U/mL <4.0 (Negative)  

Immunology (05/16/2012 1:08 PM MST)
Name Result Normal Range
Gliadin IgG <10.0 Units <20.0 (Negative)  
Gliadin IgA <10.0 Units <20.0 (Negative)  

Immunology (05/16/2012 1:08 PM MST)
Name Result Normal Range
Endomysial Negative  Negative  

Tumor Markers (05/16/2012 1:08 PM MST)
Name Result Normal Range
VIP 51.0 pg/mL <75  

Immunology (05/16/2012 12:35 PM MST)
Name Result Normal Range
Tissue Transglut IgG Ab 2.4 U/mL <6.0 (Negative)  

Timed Urine Chemistry (05/15/2012 11:36 AM MST)
Name Result Normal Range
U Na MML 152.0 mmol/24 hrs 41 - 227  
U Na Conc 92.0 mmol/L  
U Na Duration 24.0  
U Na Volume 1650.0 mL  

Timed Urine Chemistry (05/15/2012 11:36 AM MST)
Name Result Normal Range
U Creat Conc 63.0 mg/dL  
U N-Methylhist 89.0 mcg/g Cr 30 - 200  
U N-Methylhist Duration 24  
U N-Methylhist Volume 1650 mL  

Timed Urine Chemistry (05/15/2012 11:36 AM MST)
Name Result Normal Range
U Metaneph 87.0 mcg/24 h  
U Total Metaneph 486.0 mcg/24 h  
U Metaneph Volume 1650 mL  
U Metaneph Duration 24  
U Normetaneph 399.0 mcg/24 h  

Endocrinology (05/15/2012 11:36 AM MST)
Name Result Normal Range
U BPG2 Conc 200.0 pg/mL  
U BPG2 330.0 ng/24h < or = 1000  
U BPG2 Vol 24  
U BPG2 Duration 1650 mL  

Differential (05/15/2012 10:17 AM MST)
Name Result Normal Range
Nucleated RBC 0.0 /100 WBC  

Blood Cell Count (05/15/2012 10:17 AM MST)
Name Result Normal Range
Hgb 12.3 g/dL 12.0 - 15.5  
Hct 37.7 % 34.9 - 44.5  
RBC 4.21 x10(12)/L 3.68 - 4.88  
MCV 89.5 fL 82.7 - 96.8  
RDW CV 12.2 % 11.9 - 15.5  
WBC 4.7 x10(9)/L 3.4 - 10.6  
Platelet Count 256.0 x10(9)/L 149 - 375  

Differential (05/15/2012 10:17 AM MST)
Name Result Normal Range
Neutrophils Absolute 2.26 x10(9)/L 1.40 - 6.60  
Lymphocytes Absolute 1.92 x10(9)/L 1.00 - 3.40  
Monocytes Absolute 0.38 x10(9)/L 0.20 - 0.80  
Eosinophils Absolute 0.1 x10(9)/L 0.00 - 0.40  
Basophils Absolute 0.03 x10(9)/L 0.00 - 0.20  

General Chemistry (05/15/2012 10:17 AM MST)
Name Result Normal Range
Creat-CT,IVP,MRI,Hem 0.7 mg/dL 0.6 - 1.1  

General Chemistry (05/15/2012 10:17 AM MST)
Name Result Normal Range
Estimated GFR > 60 mL/min  

Enzymes (05/15/2012 10:17 AM MST)
Name Result Normal Range
ALT 15.0 u/l 7 - 45  

Enzymes (05/15/2012 10:17 AM MST)
Name Result Normal Range
AST 16.0 u/l 8 - 43  

General Chemistry (05/15/2012 10:17 AM MST)
Name Result Normal Range
Na 138.0 mmol/L 135 - 145  
K 4.4 mmol/L 3.8 - 5.0  
Cl 100.0 mmol/L 100 - 108  
TCO2 28.0 mmol/L 22 - 29  
Anion Gap 10.0  7 - 15  

General Chemistry (05/15/2012 10:17 AM MST)
Name Result Normal Range
Glucose, Plasma/Serum 97.0 mg/dL 70 - 100  

Glucose Studies (05/15/2012 10:17 AM MST)
Name Result Normal Range
A1C 5.4 % 4.7 - 5.8  

Thyroid (05/15/2012 10:17 AM MST)
Name Result Normal Range
S-TSH 0.88 mIU/L 0.30 - 5.00  

Special Hematology (05/15/2012 10:17 AM MST)
Name Result Normal Range
Folate >20.0 ug/L >=4.0  

Special Hematology (05/15/2012 10:17 AM MST)
Name Result Normal Range
B12 925.0 ng/L 180 - 914  

Special Hematology (05/15/2012 10:17 AM MST)
Name Result Normal Range
Ferritin 42.0 mcg/L 11 - 307  

Special Chemistry (05/15/2012 10:17 AM MST)
Name Result Normal Range
Cort AM 5.2 mcg/dL 7.0 - 25.0  

Immunology (05/15/2012 10:17 AM MST)
Name Result Normal Range
AutoAbs to Proteinase 3 <0.2 Units <0.4 (Negative)  
Myeloperoxidase Ab,IgG <0.2 Units <0.4 (Negative)  

Enzymes (05/15/2012 10:17 AM MST)
Name Result Normal Range
ACE 19.0 u/l 8 - 53  

Immunology (05/15/2012 10:17 AM MST)
Name Result Normal Range
Tissue Transglut IgA Ab <1.2 U/mL <4.0 (Negative)  

Immunology (05/15/2012 10:17 AM MST)
Name Result Normal Range
Gliadin IgG <10.0 Units <20.0 (Negative)  
Gliadin IgA <10.0 Units <20.0 (Negative)  

Immunology (05/15/2012 10:17 AM MST)
Name Result Normal Range
ANA 0.2 Units <1.1  

Immunology (05/15/2012 10:17 AM MST)
Name Result Normal Range
ENA Scrn 3.0  1 - 19  

Special Chemistry (05/15/2012 10:17 AM MST)
Name Result Normal Range
Tryptase 2.2 ng/mL <11.5  

Special Chemistry (05/15/2012 10:17 AM MST)
Name Result Normal Range
25-H D2 <4.0 ng/mL  
25-H D3 31.0 ng/mL  
25-Hydroxy D Total 31.0 ng/mL  

Endocrinology (05/15/2012 10:17 AM MST)
Name Result Normal Range
Normetaneph Free 0.74 nmol/L <0.90  
Metaneph Free 0.21 nmol/L <0.50  

Special Hematology (05/15/2012 10:17 AM MST)
Name Result Normal Range
MMA Serum 0.08 nmol/mL <=0.40  

Immunology (05/15/2012 10:17 AM MST)
Name Result Normal Range
GAD65 Ab 0.0 nmol/L <= 0.02  

Immunology (05/15/2012 10:17 AM MST)
Name Result Normal Range
N-Type Calcium Channel Ab S 0.0 nmol/L <=0.03  
P/Q-Type Calcium Channel Ab S 0.0 nmol/L <=0.02  
AChR Muscle Bind Ab 0.0 nmol/L <=0.02  
AChR Ganglionic Neuronal Ab, S 0.0 nmol/L <=0.02  
Neuroimmunology Interp See Comment  
ANNA-1 Serum Negative Titer <1:240  
ANNA-2 Serum Negative Titer <1:240  
ANNA-3, Serum Negative Titer <1:240  
AGNA-1, Serum Negative Titer <1:240  
PCA-1, Serum Negative Titer <1:240  
PCA-2, Serum Negative Titer <1:240  
PCA-Tr, S Negative Titer <1:240  
Amphiphysin, S Negative Titer <1:240  
CRMP-5, Serum Negative Titer  
Striat Muscle Ab Negative Titer <1:60  
Neuronal (V-G) K+ Channel Ab 0.0 nmol/L <=0.02  

Special Hematology (05/15/2012 10:16 AM MST)
Name Result Normal Range
Sed Rate 10.0 mm/1 h 0 - 29  

I noticed that you're taking B vitamins.  Your B-12 was above normal, so you might ask your doctor about discontinuing them unless there was another B vitamin that you've been low on.  Niacin (and niacinamide) can cause flushing in some people with and without mast cell problems, so it might be worthwhile to remove that from your diet and see how that works.

Have you seen posts about the low histamine diet and about food and symptom diaries?  Figuring out food triggers for your symptoms might help you feel better.  The low histamine diet is a starting point, but other elimination diets can work, too.

Hope you can get an answer soon!

DeborahW- thanks, I do have a question, if over the counter meds seem to work, than what is the point in chasing down a dx that you have to see one of the best and even than it is difficult to catch it? I ask this cause couldn't you just try allegra,zyrtec and zantac and see how u do? Because I know how difficult it was for me to fight with doctors and insurance just to go to the right doctors for my pots, and i can't imagine them being very willing to send me now to Boston for another thing.
Joan I actually take the b complex for my menopausal symptoms. I have been in perimenopause since 28 and due to having factor v Leiden, I can't take hormones, so the doctors said b complex or black cohosh.  But I was wondering with my b12 coming back high, if that was actually bad to be too high. I really do need to figure out my triggers as they mostly seem to be food, cause I try to avoid other stuff like smells that bring on episodes too. I do bad with milk and ice cream but i have been able to tolerate yogurt. At first a few years ago I thought I was lactose intolerant and than in the last year I started to wonder if it was more gluten too, but they checked me for celiac. So i am not really sure what it is. But I defintiely need to try the low histamine diet.
Anaphalaxing- thanks, best of luck trying to find out ur triggers, looks like we will figure this out for ourselves.

Ditto to Joan's response on your question about getting a diagnosis. But here's a few additions that I thought of. When I first started questioning whether I had a form of Mastocytosis my symptoms were fewer then they are now. I was not triggeted ss badly as I am now. I credit this to not being medicated proprrly and now there is suspicion of POTS. I want to mention quickly that I saw a doctor at Vanderbilt in Nashville who said Mastocytosis and POTS together are not uncommon.
Another plus to getting diagnosed and treated, your medical history mentioned a military affiliation. I am assuming you have Tricare. I do. To be properly treated for a mast cell disorder, most all of us have to take large quantities of H1 & H2 blockers ie. Zyrtec, Allegra, Zantac and Benadryl. Purchasing these over the counter does get expensive. You can get these prescribed and covered under Tricare. In the beginning the over the counter stuff helped me a great deal but with time
I've aquired more issues and it's been discussed with my doc that we may have to give Gastrocrom or Ketotifin (sp?) A try. Those are not available over the counter.
Getting diagnosed could take time. Your sensitivities or triggers could increase leaving you feeling worse then you do now. Once you get diagnosed you will want a local doc to see and that often is an ordeal finding someone local. Most times local doctors aren't on board 'until' or already have a diagnosis. And even then it requires them to learn more about it so you can get the proper treatment.
Now with all that time consuming stuff listed lets say you opt out of getting a diagnosis and just pretend that all the sudden this summer you become heat intollerant and begin experiencing anaphylaxes but you don't have a diagnosis so even going to the ER they won't recognize your symptoms as a classic anaphylactic reaction so they think you are having an anxiety attack.......get my picture here?

I personally feel it is VERY important to work toward a diagnosis now.  If you are still in Georgia you would be closer to Charleston, SC where Dr Afrin (he is one of the mast cell specialists) is.
I understand your hesitation after having to fight to get diagnosed with POTS. But I really believe the effort to figure out if you have a madt cell didorder or not would be worth it.
All the luck to you!  

Kim

Thanks. Yes I have been ruled out for mastocytosis. Which I expected. But they can't rule out a mast cell activation disorder/syndrome. I have taken black cohosh, and I don't like how I feel with it. I haven't tried to figure out my tiggers, but I definitely think spinach is one. As the last two times I had a spinach salad, I began flushing, sweating, tummy a he and than omitted it all up, and a little bit of tremors. Is this what a mast cell reaction is like or is it more of a food intolerance? Yes, I have tricare and i do get it through the pharmacy so i don't have to pay for my h1 and h2 blocker. I am just kind of worn out. I will probably get a boost again soon and start pushing to see Dr. Afrin since he is only 3 hours away

YES what you experienced from your spinach salad can be a symptom. Spinach contains high levels of histamine naturally. The thing is that not everyone with MCAS will have exact same symptoms. Some may have problems with a particular food or medication or other stimuli that others may be ok with. Really makes this a difficult disorder to pin down. There is this great low histamine diet that I have been working on for months. You can find it at www.urticaria.thunderworksinc.com/pages/lowhistamine.htm
At first it was too overwhelming to try to figure out so I picked one food at a time to try and added more along the way. For me my biggest no-no's so far is alcohol, left over meats and soy. But again let me say we are all a bit different in our triggers and symptoms.
As for your question about a mast cell reaction, well that too can be an individual experience as well. What you felt from your salad can be a mast cell reaction but there are many more. Take some time if you can to look through some of the posts for examples of some others reactions. Brain fog, bone pain, mouth sores and/or burning, flushing, extreme fatigue, anaphylaxis, tachycardia, potty issues, heat and/or cold flashes, GI issues, medicine sensitivities and so many more. Just keep in mind that not everyone is exactly alike.

Many of us here will relate to getting worn out and needing to take a break, regroup and jump back into getting answers! We are here for you. Good luck!

I LOVE spinich!!!!  But had to swear off of it!   There was no denying that it goes straight through me now!  I can´t eat it cooked nor raw and have seen that other similar leafy greens also do this.  Even lettuce.  On good days, I can handle lettuce, but not spinich!

As to the symptoms you describe, I´d say you were definitely on the edge of major reacting.   When I eat spinich this is what it does to me too - flushing, horrible cramps, weakness, shakiness, dyspnea, but with the bowel movement, this usually improves.   All of these symptoms can be caused by the process of your bowels rejecting the food itself for in the process of rejecting it, the MCs in your intestines are reacting and you also have the smooth muscles contracting to force it all out.   The muscles moving and cramping quickly also make the MCs react.  

You see, if you had the masto lesions on your skin, the mere rubbing of those lesions are known to put the patient into anaphylaxis.  Rubbing the spots causes the MCs to be activated and degranulate.  So when you consider those MCs being in the tissues of the intestines, their being forced to contract is like rubbing your hand over your lesions on your skin, understand?   So, in eating a food that the MCs reject, you create two situations within your intestines, 1. the degranulation by reacting to the food itself and then 2. the degranulation caused by the muscular activity of forcing out the contents of your intestines.    

This is why once the offending material is out of your intestines, you usually feel much better and the reacting will usually subside.  

However, sometimes it doesn´t subside, so what then?  If the shakiness and malaise, flushing, etc don´t subside, then you may need to take an extra H2 blocker for that antihistamine (ranitidine) is what blocks the histamine release going on within the pelvic region - intestines, bladder and uterus.  There are H1 histamines being released in the pelvic regions but research has shown that there is more H2 histamine going on in those regions.

Can anaphylaxis show itself mainly as diarrhea?   YES!   I´ve had crises where diarrhea was the major symptom  and one recently where it was vomiting that was the major symptom.  The ER docs thought it was gastroenteritis, but when I was magically improved with IV antihistamines and the vomiting and nausea didn´t return later, we knew it was anaphylaxis instead!!!

It´s a hard disease to figure out!!!


I hope this helps!


Lisa