Hi Shawna and CONGRATS for getting a diagnosis!! I am so happy that you joined us and Im THRILLED that they are finding little else (so far) with your tests. If you play it careful and smart, you dont have to get any worse Hon... I pray for a great quality of life for you once you get these GI symptoms under control!

There are so many different meds H1 and H2 blockers that you can choose from until you find the one you respond to the best.. Yes, some are drying,.. but you will grow out of that, it will pass.. I might suggest either Singular or Vistaril.. those are the 2, I see people saying they love the most--the best results for them.

Doxepin isnt good for people who have low Seritonin  levels.. I tried it too, didnt help. I would REALLY like to see you try Zantac 300 mg twice a day--it is such a help to most of us. Talk to your doctor , keep working on your battle plan and keep a positive outlook..Once your meds are "tweaked" right for you, life will get so much better
Hugs!!
Ramona

Hi Shawna, glad you joined the forum. I was just diagnosed with TMEP as well last Tuesday. It's been a 3 year journey for me as well, which I consider too long but I guess the average time it takes someone with masto to get diagnosed is 9 years!
I understand your fears about the future with CFS, and mastocytosis. I was diagnosed with Fibro a year ago after going to the doctor for a couple of years with problems. You will notice many people of this site that were diagnosed with either CFS or Fibro before masto. Many of us wonder is there some kind of connection or were some of us misdiagnosed? You will probably have a better idea when you get on the right combination of meds that's right for you. If your symptoms of CFS disappear when you take your masto meds then you might start to question that diagnoses. Only you will know.
A lot of people with CFS and Fibromyalgia find relieve of their symptoms with some diet adjudgements like eating no sugar....none, even little fruit. For me this diet gives me like an 80% improvement in symptoms. My mother in law has fibro and at times could barely get out of bed, I noticed that when ever she ate bread products her symptoms got worse, I had been hounding her for years just to try to go gluten free, she has now and she said it is like night and day for her. So I know doctors will tell you diet doesn't play a part in fibro and CFS and I would beg to differ.

Finding the right combination of meds will take a little time so don't get to discouraged. I'm still trying to figure out mine.
Ramona is right 300mg zantac twice daily seems to help a lot of us. I hate taking all these meds too, but for me upping my zantac to 300mg twice daily made a big difference in how much I flushed and how  itchy I was.
I too have children and understand that being that drowsy is unacceptable. I took doxipen for about 2 weeks and yes it made me feel like a zombie. I take hydroxyzine 50mg at it helps me sleep without the frequent waking I have experienced for years, so feel like I get solid sleep....yet I'm not a zombie and I still wake up when my 12 month old baby wakes up in the middle of the night. I just started cromoyln and I already am seeing a difference.
I still have a lot to learn but there is a ton of really knowledge people on this site that can help if you need it. I think the biggest part of managing masto is figuring out your triggers, for most of us it's food. Do you know what your triggers are?
It's nice to meet someone else with TMEP. Where do live? I'm in washington state.
Melissa

Shawna you are lucky that you are in DC, your pretty close to some of the masto expert doctors.
Cromoyln sodium is a mast cell stabilizer. So from what I understand it blocks mast cells from releasing those contents that causes those annoying masto symptoms. Someone else might be able to explain it better than me. But I noticed a difference in my breathing, which was weird because I didn't know my breathing was even being affected. I heard Singular helps a lot of people, thats the next med I will try.

What kind of symptoms do you have with the masto?
Melissa

HI Shawna, and welcome to the forum,

There is hereditary form of mastocytosis, and researchers are also studying mast cell dysfunction in fibromyalgia patients.  They now feel there's a connection.  

Many people with mast cell disorders have digestive problems, and it's known that mast cells can be the culprit.  When your son has his testing, you might ask them to test for mast cells,too, and, if they find he has too many in his digestive system, to do a morphology on them.  Gastrocrom is the treatment of choice for that problem. 6-8  weeks of gastrocrom might give a long term positive result, or treatment may need to be ongoing.  I've also had a lot of luck using probiotics.  My favorite at the moment is "Align," which is available over the counter at pharmacies.

If you haven't already, you might want to try a low histamine diet for both of you.  (www.urticaria.thunderworksinc.com/pages/lowhistamine.htm)  You do have to be strict on it, because eating just one high histamine food or a food that triggers direct histamine release can send you back to square one.

Regarding doxepin, I took it in the beginning just to get some relief from the symptoms.  However, I only took 10 mg. and only in the evening before bed.  It helped my sleep, and I felt rested in the morning.  Of course, we're all different and that may not be the best med for you.

Shawna, I'm not sure how your sons digestion is or if he has a lot of pain and/or many foods he can't eat but there is a book out there called ''Breaking the Vicous Cycle, The Specific Carbohyrate Diet". It is a book for people with bowel disorders. I have it and I'm actually reading it again. It's very interesting and makes a lot of science, the woman who wrote did a lot of research on this stuff. You can read the reviews on amazon, some people say it changed there lives dramically. I will include the links.
Yes, there is very little info on TMEP. Please share any info you find as I will do the same. My doctor talked to me about the laser treatment, the price has really come down.
I have spots on my arms in several places that look like age spots too, they are very faint, I also have some on my legs that rarely get any sun which I also thought was wierd and then I just started getting ones that look like moles/freckles mostly on my arms/chest and back and it was in a really short period of time, like with 2 weeks I had 30 new spots and I thought.....a person doesn't get 30 new moles that quick and it's in the middle of winter. The spots on my chest are red and bigger. They are like the size of a pea or a little bigger. Anyways thanks for sharing.
http://www.breakingtheviciouscycle.info/
http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/product-reviews/...

Melissa

Thanks Josie!
Melissa

Shawna,  from what I understand all the "treatments" wouldn't be permanent, but I can say...when I go to the tanning booth, (which is rare), it does seem to make the "spots" better...but I don't know if that is because of the tanned skin, they show less???  But I will say, my skin feels better after I have tanned. (in a booth-and I'm talking like 6-7 mins. max)     I cannot be in the sun....I live in the air conditioning. I become very ill if I am in direct sunlight. Let's just say I wear a lot of capris.