I feel betrayed by my body, and the last several months have been extremely hard on myself and my family. I am looking for some feedback and insight. I don’t really know where to start so I'll start with my story:

I am a 38yr old male, Caucasian, 5’-11” and 158lbs. 6 months ago I weighed approximately 195lbs. I have a nifty weight scale at home that measures my body fat and says that I am down to 5%. I literally feel like I am wasting away.

6 years ago I visited a GI doctor with light stomach pains, diarrhea, and because of the frequency of the diarrhea a little anxiety. This doctor ran all sorts of tests (stool, blood colonoscopy, endoscopy, barium series) and only found slight inflammation of my colon. He said that if he didn’t know any better I was a healthy 32yr-old (at that time) with no problems. He diagnosed me with IBS-D, told me to take Imodium as needed and sent me on my way. At that time, my symptoms were mild, so just about everything I took made me feel better (pepto, imoduim) but the diarrhea was/is an everyday occurrence- as constant as the North Star - always reminding me that something was wrong.

I then kept exhaustive food diaries and completed months of elimination diets to detect and eliminate suspected IBS 'triggers'. The diets helped me eliminate some trigger foods, but my symptoms didn’t go away. Other times, safe IBS foods seemed to set my system off. In other words I couldn’t put the IBS into remission (for lack of better terms) and I couldn’t get to a ‘good period without symptoms’ as my research said I could. In fact, over the next five years my symptoms steadily worsened and I upped my intake of Imodium to compensate for the increase in diarrhea. I periodically visited my GI who said that it is all in my head, prescribed Bentyl (an antispasmodic) and told me to continue taking Imodium.

The steady decline or worsening of my symptoms was slow, until summer 2012. I decided that I didn't want to be a slave to my IBS, popped a bunch of Imodium and Bentyl, and when out with my friends. I ended up drinking more than my share that night, which was expected. But what I didn't expect was that it took my system a week to semi-balance out. Since then, my diarrhea has been worsening at a steadily increasing rate. Has this happened to anybody?

Being an Engineer, I am always looking for a solution and because of this I have continued to keep track of my symptoms and continued to research IBS. I have noted that I do NOT have the following IBS symptoms: stomach spasms/cramps and elimination of documented trigger foods did not alleviate my symptoms. I do, however, wish this was solely IBS. My symptoms are:

1)Chronic diarrhea (up to 5 times a day). Currently on Lomotil, which reduces this to 2-3 times/day. No longer on Imodium – was taking about 6-8 tablets/day. Lomotil slows down your system's motility, so I am thinking that my system has something in it that it doesn't like and is rapidly trying to expel it? Am I off base here? Anyway, Lomotil is simply 'masking' the underlying cause(s).
2)Drastic weight loss (almost 40 pounds in the last 6 months)
3)Diarrhea is ALWAYS bright yellow (?). Man, how I wish for a brown BM just every once in a while.
4)Stomach pains after eating (probably from not eating the right foods?). The pains are not always there, but when they are, they feel like a gnawing pain - like I ate something bad.
5)When I pass gas it NEVER smells. Before I had my issues, I would think they smelled..well you know...normal. Nowadays, if it didn't make a sound you'd never know I tooted. Is this typical of mastocytosis? Between the chronic everyday diarrhea and the nonsmelly farts I was thinking of bacterial imbalance, but I haven't been able to figure anything out....
6)No skin lesions, red bumps or other typical of the pictures on the internet. In fact, if it wasn’t for my GI tract issues I wouldn’t have thought I had any problems.
7)Energy level is fine, but lately a bit low probably due to the fact that I am not eating much. I am also worried about malabsorption.

A few months ago I had an allergist perform scratch tests and blood allergy tests, which all came back negative. Is it common for them to not test for sugar/glucose/fructose? These have been known to give me gas.

I couldn’t convince my old GI doctor that I didn’t have IBS (or that it wasn’t the root cause of my issues), so I went for a second opinion. My new GI doctor (Dr. Colin Brown from the Middlesex-Monmouth Gastroenterology) reviewed my records and ordered new blood tests and a CT scan of my GI tract. He’s been excellent so far. The CT scan showed a few nodules in the colon and a slight thickening of the stomach lining, but otherwise a healthy system. He found that I had a positive ANA with a titer of 1:40 (I do have psoriasis). He also found that I had a tryptase reading of 24. According to Dr. Brown, this is a sign of mastocytosis. He also admitted he isn’t as familiar with this disorder and it isn’t common.

I just had a endoscopy/colonoscopy last week (Thursday) for confirmation of this diagnosis and currently am waiting on biopsy results.

So now that I may have mastocytosis and not IBS I am scared to eat. I read that some IBS 'safe' foods are not histamine safe foods. Right now my diet consists of white rice, oatmeal, some milk, fresh chicken, steamed veggies, yeastless breads, egg noodles, and eggs. No soda, tea, coffee or alcohol. Not exactly much to write home about.

I have recently contacted Dr. Akin and he sent me a letter stating what I need to do to request an appointment. I am currently working to gather the required information.

For the time being, Dr. Brown has me on Claritin 24h – 1 tablet a day, and Zantac 150mg – 1 tablet every 12hrs.

QUESTIONS:
1. Can mastocytosis be confirmed via colonoscopy biopsies?
2. Since I am 155-160lbs, should I be taking more than 150mg Zantac tablet every 12hrs? I have read some people take 300mg.
3. I noticed that most people take Zyrtec/Allegra. What about Claritin? Should I switch? Perhaps Zyrtec/Allegra is more effective?

Any other insight or suggestions would be greatly appreciated.

NJDad,
I want first to say I am glad you found us! You have seen a wise doctor to test your Tryptase and actually know something about Masto. The Tryptase test being over 20 is definitly meeting a criteria  for mastocytosis. I believe that a GI biopsy can confirm.  Another confirming test is a Bone Marrow Biopsy(BMB).  Several of us have opted not to have a BMB. There are often false negitive test results if they are done inproperly. The BMB can confirm but it doesn't change the treatment.  For people that have masto symptoms but do not meet the WHO criteria for mastocytosis, are considered to have Mast Cell Activation Syndrom, the treatment is the same for both.

The good news is that now you can start helping yourself!  You should start with a low histamine diet.  I had the yellow diarreaha for months until I got stabilized. That is a good place to start.  Many of us have found that clartin does not do a whole lot.  Allegra or zyrtec are the favorite H1s.   Taking zantac at least 2 times a day. I actually started out on 4 (150) a day. Two in the morning two at night.  I am now down to 2 a day.  You most likely will need to be put on some mast cell stabilizers-cromolyn did wonders for me, took about 4-6 months to stabilize on the cromolyn, but I did feel better after a few weeks on it.
Another mast cell stabilizer is Ketotifen, many have done well on that.  Each of us are different, so treatment will be different.

There are many foods and drugs that can cause triggering.  Here is a great link to a list, you should also look for the diet in blue!

http://www.mastocytosis.ca/symptoms.htm

Hi PamH - I am finding conflicting info on butter and eggs. Are they typically safe to eat or should I avoid them?

NJDad,
I have scrambled eggs almost everyday.  I use butter too.  I have read that uncooked egg whites can be higher in histamines so just be sure to cook them well.  We are all different so things will be different for all of us.  I follow a low histamine diet but there are actually a few things on the don't have list that I do fine with. (green beans and potatoes)
I would suggest that you do the low histamine diet until you feel well enough to add one thing at a time to test.
Allegra does not make me tired.  Zyrtec did make me tired.  For awhile I took allegra in the morning and Zyrtec at night.  Atarax is a really great histamine but it is by prescription only and it is very sedating.
I would personally not take probiotics until you are stablized.  Right now you need to get on the right histamines and maybe mast cell stabilizers.  Throwing a probiotic into the mix may not be the best thing.
Also, I found that I did very well drinking only distilled water with out minerals. ( I was trigging by drinking water)
Once I was started on mast cell stabilizers I started to improve in a few weeks, but took about 4 months for my bone pain to go away and 5 or so months to feel close to normal.
I also have a salicylate sensitivity.  This is actually NOT very common but there are a few masto people that have a salicylate issue.  If you don't feel relief on the low histamine diet you may want to look into salicylates.  They cause the mast cells to degranulate in some people. Salicylates are in many fruits, veggies and everyday products.  Here is another link.
http://salicylatesensitivity.com/about/food-guide/

I am very thankful to have a wonderful husband that has taken such good care of me. We are blessed in this area!
Let me know if you have any other questions!

Thanks again for the replys.

I do have another question regarding meats - I understand that eating leftover meats is a no-no, but what if I cook fresh meat, then immediately freeze it? Can I heat it up at a later time to eat it?

Yes, you can freeze your cooked meat and eat it later.  They recommend fast thaw, like a microwave.  I can tell you from experience that meat grows histamines at an alarming rate!  I had some left over chicken on a roadtrip, what a mistake that was.  I needed a bathroom a few minutes after I ate it.  Not good on a roadtrip. Histamines cause me diarrehea consistantly.  This takes awhile to figure out, but once you do you will get handle on things.

Thanks again for all the responses. I am starting to take 2x150mg Zantac twice a day plus Claritin 10mg in the morning and evening. Once the Claritin is gone, I'll switch to Allegra. For the first time in years, I am hopeful.

Starflower - I probably have been dealing with these symptoms longer than the last 5 years - it has only been these last 5 that my diarrhea caused me to notice something was wrong. Come to think of it, several years ago I went to get my heart checked out b/c it was racing/fluttering at times. The doc couldn't find anything wrong. Perhaps is was Masto.