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The mast cell disease I will definately bring up when I see the dermatologist on the 27th at UCLA because of the erythema rash and swelling of my right arm that is still undiagnosed. The swelling is worse around wrist. I have had in Sept last an endoscopy and colonoscopy with many biopsies to determine if possible vasculitis, lymphedema, protein losing enteropathy ect. All biopsies were normal except for focal intestinal metaplasia cause unknown but possible to bile. This is in my stomach. ANA, PANCA, other autoimmune disorder tests all negative. In May I had an enteroscopy performed because on a CT with contrast Abdomen pelvis done in March 2011 showed an intusseption at the Juejunojuno stomy. This was also on Ct from Oct 2010 as well. At the time no sign but there was a couple of ulceration patches in the efferant limb and biospies were taken. Also clips had to be placed due to bleeding. Result was thought to be from old injury and healing. Concluded it is an intermittant intusseption. I am not candidate for surgery as thought may have been there before surgery or develope afterward. Because of way reacted after gastric bypass surgery, malabsorbtion, current chronic nausea, EDS, and multiple vitamin deficiencies I am not a condidate for surgery. The doctors feel it will more likely develope again. Right now the intermitant intusseption does not compromise the small intestine. If it does then surgery will have to be performed.
My vitamin deficiencies are Vitamin C which is half what the norm should be so clinically scurvy, Vitamin D 25 hydroxy 18, Vitamin K sometimes, sometimes B12, and Niacin (B3) has come back non-existant. Serum Ionized calcium is low.
My PTH levels last tested May 2011 was 109 despite Calcitriol 1 mcg TID since November 2010. This has risen from 92 to 109 from January 2011-May 2011. I was diagnosed with Secondary Hyperparathyroidism in Sept 2010.
Also conclusion from the Endo is that i also short gut syndrome so absorbtion does not happen with me. The wierd thing can absorb macronutrients but not micro nutrients. No one still knows the reason for this.
My multivitamin infusions will be moved from Q month, just had first one on July 13 to Q week. Calcium, Vitamin D3, and Vitamin C will be added extra to vitamins.
I speak more on this matter to the Endo on monday when i see him. He called me yesterday as he got back from a conference recently. Turns out I was a bit curiosity there as he shared my info with other physicians and concluded the same. We are supposed to talk more indepth on this matter then and some suggestions that were given.
I also just had labs drawn and will know more whe they come in as many are specialized send outs:
Magnesium, Zinc, Serum Copper, Comprehensive Metabolic panel, PTH Intact, Serum Ionized Calcium, Lipid Panel, C-Reactive protein, West Sed Rate, CBC with auto and manual diff, Vitamin A, Vitamin B1, Vitamin B2, Vitamin B3, Vitamin B5, Vitamin B6, Vitamin B7, Vitamin B12, Vitamin C, Vitamin D 25 hydroxy, Vitamin D 1,25 di-hydroxy, Vitamin E, and Vitamin K, and Folic Acid.
It has been consistant for alost 3 years that the CRP and Sed rate are high, almost double than highest norm. Still to this day no one explain this as it ususally indicative of inflamatory process.
The results i do have from new tests is my CRP is 1.08 mg/dL with reference range of 0.0-0.50.
and Alk Phos is slightly high at 107 int_units/L reference range is 32-104. Rest Routine Chemistry normal except BUN 6 mg/dL. I was fasting for this test.
Lipid Normal-have never had cholesterol issues and HDL has always been high.
Folate and B12 normal.
CBC all normal except MCV, and MCHC, are low and RDW, and MPV, are high. Monocyte Relativity low. This seems to be consistant with other labs in past.
Awaiting results of rest.
Can a person have mast cell disease but biopsoies both from esophagus to stomach, small intestine and colon nad some large intestine be normal showing no inflaamatory process, and all tests for autoimmune all normal? There have been no skin biopsies performed.
Can Mast cell disease show up in genetic testing? I had a Micro- Array CGH done and the only thing that came up was Chromosome 2p16.3 microdeletion. DNA fingerprinting agreed to finding but was also partially inconclusive. I will have copies of these results monday when I meet with the geneticist again. All I know from what genetic counselor stated was that this chromosome abnormality is very rare. I can not really find anything on it online but will have more info when I see doctor.
I have lymphedema and lipodema bilateral legs, EDS type 3, seconday hyperparathyroidism, REM disorder, malabsorbtion syndrome, intermittant intusseption, focal intestinal metaplasia-stomach, mix headache tension/migrain, chronic and complete tears of the ACL left knee and menicus left knee, photophobia, amblyopia, presbyopia, strabismus, myopia, some dry eyes, pupils larger than norm 4mm even with glasses off, chronic insomnia, chronic nausea/vomiting, and osteopenia. I do have bone spurs both feet as well. Wierd rash swelling right arm unexplained. I also have hard time adjust body temp, have preiods of extreme dizzyness, low blood pressure or pulse, and I always tired.