Hello and welcome. I am sure that we can help you with some tips! Can you get any over the counter allegra? If so, you could try taking one of those and see how you do. When I am especially ill, I take both a Zyrtec and an allegra. That really helps. You mention coffee. Be careful, as coffee (even decaf) can trigger you. If you have any safe foods, you might want to try just eating those for a week or so, avoiding all triggers, and taking the meds. You might see a positive difference.

What dosage Zantac and Zyrtec are you taking? Also, are you taking brand Zyrtec? Some people report problems with generic Zyrtec. Since you have such intense GI problems, like I use to, you probably should be taking 300 mg Zantac twice day.  Taking your meds should be the first thing you do in the
morning. Also, try not to eat after 5:00 or 6:00 pm. These are just some tricks that helped me when I was first ill.

Some of your symptoms don't remind me of mast cell disease, but you could have a combination of conditions. Please continue to ask questions and we will help!

Hello Ramona,
Thank you for welcoming me. I have been away at a retreat over the weekend and finally was able to sit at my computer today. Been having internet problems as late and hope I dont go off line again.
Thank you for letting me know more about meds, I know there is much more that needs to be done and it's only from reading this site. I cannot believe how laid back my doctors are. I received a hell of a ride in the beginning because of my so called mental health issues. I kept mentioning my wierd and wonderful symptoms and they just put it down to my Post traumatic stress, anxiety and depression they could not agree with me that something else was going on and it did not help that all the tests they did came back negative which only made me look even more mad (as in cookcoo so to speak)!
I had real problems after they did an endoscopy thinking that I had an ulcer, now I know that the anathestic is a trigger and that just exploded things even more, so much so I was bed ridden for 3 months barely able to eat drink or stay awake. The nausea that came and went was with me daily and more intense. I had severe nerve pain that radiated firstly from my legs and over weeks worked up in to my face. The nerve pain was hard to deal with as all the meds I was given failed to help in any way, they only made me feel worse. I had ringing in the ears which was extremly loud but now is bearable and sometimes I barely notice it. At one stage every time I talked It was like a bomb went off in my head. My neck was extremely stiff and I had problems turning it, it was like a gear stick with no lubrecation. I would wake up in the middle of the night covered in sweat, I would have to get up and change shivering and in total pain. The mornings were shear hell, I would break out in a sweat just getting out of bed and walking to get a drink or go to the bath room. Many times I had to run a hot bath to try and cope and get into dry clothes and go back to bed, where I would shiver  until I got warm again. It was if my ability to regulate heat had disappeared. I had the endoscopy in June of 2008 which is the beginning of our winter here. I live near the coast but in a valley and it does get quite cold in my old queenslander home with one fire place. I think it dropped to 4 degrees but it felt like it was 40 degrees below and even as the days warmed I still stayed bitterly cold and shivered all the time. I had 3 pairs of socks on two pair long pants thermol top and t shirt and jumper, in a bed with blankets and electric blanket with a heater going 24/7 in my bedroom and I still could not get warm enough to feel comfortable. This was my winter in that year. Since I started using the essential oils I have not returned to this severity of ill health and I have not had to go under any operations that require anaesthetics which I beleive exhasberated all my symptoms. Up until October of that year I was back and forward to the doctors and hospital, and loosing weight everyday. There was a long period that I just lay in bed unable to do anything. My eye sight changed frequently from a bit blurry to total cannot read or watch tv so I just closed my eyes and lay in silence. I couldn't even cry about my misrable state as that only caused severe nerve pain that radiated from my nose to my ears, it started as a hot tingling sensation to a pulsating nerve pain that only abated when I stopped the pity party.
My General practioner believed I had the beginnings of MS and as I was showing signs of muscle weakness in particular on my left side and problems co-ordinating a fork to my mouth I was finally sent to a nuerologist at our public hospital. This took some months as we only have three in my area and two of them are not the type of doctors you want to see if you want to get well. After checking me over and reading my very long lists of problems he told me he did not know what was wrong with me, but said he beleived me and he was not going to give up on me. I defiantly had physical problems that he also beleived was not caused by PTSD etc. Finally a doctor who was listening and did not need convincing that I was not going mad. Weeks later I was booked in for a spinal tap which came back as negative for anything, then weeks later a MRI scan was done which showed small lesions on the brain which  are not MS lesions. This atleast proved something was amiss. Then I waited for another appiontment with the nuerologist who seemed very eager to tell me something. He was kinda jumping out of his skin. I was starting to feel like I was in a bad episode of, 'House'. He asked me about the phenergan and if it made a difference to my feeling any better and of course I said, 'yes'. He then told me that he thought I had MCAD and told me a little about it, and the thing that least impressed me was he said, "there is no cure". He wanted me to do a urine test to check my histamine levels which I could follow up with my own GP.As I went to say good bye I asked him, how many patients is he treateing with this illness he said"None". I then asked him does he know anyone treating anyone with this MCAD he said, 'No". I left feeling a little less than positive, and even more so whenl I got on the net and decided to check it out for myself. When I told my GP  what he told me she also stated that she had never heard of it, boy was I feeling great?
I arranged to do the urine test and waited 8 weeks which is what my GP was told by pathology. Well I was horiffied to find out it had to be done again and this time as a 24 hour test and I had to refrain from histamine food. I had researched this on the net and had to tell my GP that it had to be done again inwhich she obliged. She was good enough to locate the information of what types of food and run through how the test was to be done which I agreed seemed right after reading on a site about Mast Cell.
I was due to see my Nuerologist but felt it was piontless as the test had to be done again and we had no results and nothing had changed, I was still sick. I left a message with his secretary and he rang me back and was adamant that the test was a simple sample of urine sent of in a little bottle, he did not agree with me or my GP. So he insisted I keep the appiontment. I went into see him which is alway early morning which really is hard on me, as mornings alway give me hell. Plus I was always having to change my clothing as the sweating was so bad. Sometimes I would have to change twice before leaving the house.
He seemed more willing to listen when I arrived as I told him where I found the information on urine tests and MCAD and that pathology had told my Gp the same. He decided to accept this and just wait and see. 8 weeks later and now 4 months on the test came in and my doctor did not wait for me to have an appiontment but arranged to call me and let me know straight away, I really think that she got a shock when the test showed elivated levels, finally she believed something more was happening to me. I called the nuerologists office with the results and he also ate humble pie as well, and was very excited to know he had thought out side the box and found a possible answere. It was now october 2010. That day on he phone let me know that he was treating another person with Mast Cell she was rushed in that night with anaphlactic shock, and and made mention her symptoms where like mine, it was then I had correct him. I couldnt beleive that he had not understood that I was unwell everyday. Not just a flair up a couple of times a year. I almost dropped the phone,   I never show up to appointments moaning and crying and that was why they have all thought it was not so bad and have had such a laid back attitude even my own GP, this was something I had to address, which I did immediatly.
I made it very clear that each day is an immense struggle and started to communicate to the deepest degree the enormity of my physical pain. It was then that I was finally pushed through to a pain specialist. I had been on a waiting list to see him for over 2years and now my doctor ramped up the calls to get me in sooner. I have a fractured back from years of childhood abuse, but that is another story.
I am on oxycontin and panadiene fort every day. At first I thought the oxycontin was causing me to have strange side effects but infact its the only thing that helps the most. I take 40mg twice daily and 2 panadiene twice a day. If I am really bad I can take more but try not to as I am worried about getting addicted. I only started to take the slow release oxy about 4 and a half years ago for my back as I periodicaly had to go and have injections for morphine which I hated. I take about 40mg of Zyrtec a day and 2, 25 mg of pheneragn at night I will take it during the day as needed. The Zantac is 300mg a day. I have always had migrains and take imigram when needed but since I became unwell my migrains have doubled to about 10 a month and sometimes last for anything up to 12 days. I take asprin frequently to help with the headaches, it's the only thing that will shift them. I had never suffered from headaches before but now they are almost a daily thing.
Since I was diagnosed with a Mast Cell disorder, but yet to be fully confirmed I have stayed away from histimine foods and my health has improved more. Plus I stay away from Gluten and Wheat which seems to also help. I show symptoms of IBS which only flaired at the same time as all my other problems. I have never had bowel problems before, nor uninary tract infections which started in may 2008 until october 2008 when I was the sickest.
I had my first oil treament in October 2008 and began my journey back ever so slowly. I am not sure if you know about essential oils but they are very powerful and work at cell level. They kill parasites and help heal all manor of diseases even cancer. They have a anti-inflamatory component which is a symptom of MCAD. When I went to seen naturpaths for help they did irodology and both of them confirmed every part of my insides was inflamed, they knew I was very unwell but could not tell me what was causing it. The also comfirmed I was experiencing allergic reactions but to what? I keep myself on a good diet of fresh food, and raw, plus supplements. I dont drink or smoke, I would have a little of chicken and fish on the odd occasion and later found out it was a trigger. Fish I can tolerate in small doses but never chicken. I rarely ever had red meat. Anything with tomatoes sauce I stay away from and all those lovely hot spicey foods I loved.
Now some questions? I live in Australia, i have a GP and Nuerologist that know just about nothing about this illness, what type of doctor should I be seeing? Do you know anyone in Australia with this illness or a doctor who treats others who knows what he is doing? If not to that question who can I contact in your country who would be willing to direct another doctor here in OZ willing to treat me.
How much Zantac and Zyrtec should I be taking? I can get Zantac on a prescription but not Zyrtec and it is quite expensive.
I printed out a list of tests from your site but I am uncertain if I can get them done here in OZ I am going to show my doctor at my next visit. I have had a tryptase test and will get the results hopefully at my next appiontment. Just hope thats not been a stuff up like the urine test.
With out the essential oils I really think that I would still be inbed and probably weighing 10kgs or dead...so if anyone is interested about them i will post more on the subject.
If I dont have MCAD what else might it be?
Just to let you know I worked as a youth worker for 17 years and was attacked 3 times in 6 months and then a truck hit my work car. Six months later the kid that tried to kill me had another go, this time for 3 hours. I kept working for another 12 months and then my body and mind crashed. I had been on a lot of different types of drugs to try help me manage the anxiety, depression etc and often think that they may have beent the cause of my illness. I am adopted and dont have a family history of medical conditions but both my parents are alive and neither of them have this condition nor my siblings. I do not know about others members of my family, my father was a orphan as well. Due to what happpend at work and childhood trauma I was forced to accept a pension, the MCAD was not the result of being unable to work but now I have even less chance of returning to some paid employment. I do hold out hope though. At the moment I am involved in lobbying our Governement for their past practises of former forced adoptions. If you google the words 'officially kidnaped' and adoption you should find a picture of me and more about me and what I am doing whilst I am unwell. I am a fighter and a surviver and beleive in a God that does not wish for any of us to suffer ill health and He has sustained me to never give up and along the way to offer help and assitance to those around me.
I have 3 children my daughter is 28 married to two children 3years and 1 year. My second eldest is 25 He has cerebal palsy, asperges and epilespy and lives with me. MY youngest is 11 he also lives with me and has been a delight and strenght to me during me illness. I am single and share my home with my best friend who became my carer she is the sister I never had. I have no family other than an adopted sister. I have not had contact with my natural family for many years. so my rocky road has been shared only with my children and friend, I was lucky enough to get some support from a disablity support service due to my sons disabilities. When I got so sick that I could not even stand at the sink  to wash a plate I knew I had to get some help in even it it was only 4 hours a week.
Thank you so much for all your information and look foward to reading your reply.
This site has been an answer to prayer.
Keri

Dear Judy,
          I am so sorry to hear that your little boy is suffering, I could not imagine how difficult it must be for him and you. When you have a large number of strange symptoms its hard enough as an adult to deal with and express to a doctor let alone a child.
The essential oils can be used on children, if you would like some in formation on them please let me know. I cannot function without them. The thyme oil I place on my stomach when I feel sick and it works within minutes. The pepperment on the tops of the feet help with breathing. The valour helps with the nerve pain in the face. And if they are all applied on the feet and spine they help heal and the mylan sheath in the brain. There are about nine oils in the rain drop treatment which is what I use all the time, I may use them every fornight or monthly just depends on how I am feeling.
The oils were working long before I heard of MCAD. There are many other oils you can use if you are interested I could send information or find someone in your area that might be able to show them to you.I have a friend who is a massage therapist, infact she lives with me and she works at a health retreat. Due to the astounding results I got from using them her work has now introduced them to their clients. They are having very good feedback from people suffering a variety of illnesses.
I hope you little boy get better, I know what it is like to raise a child who suffers ill health, he is now 25 and doing well and has even surprised many specialists.
please keep intouch
Keri