SYMPTOMS OF CARCINOID TUMOR(S)...

[thebigpeatowski]

So I have had G.I. issues for years. I have been to so many doctors it's ridiculous. Most say reduce stress, take antidepressants or avoid certain foods.

My symptoms are getting progressively worse. Symptoms include intermittent flushing of my face, chronic (now daily) diarrhea and a loss of sensation in my colon (this last symptom is the most recent and started since Peating).

I noticed the face flushing years ago, but always thought it was related to emotional stress, or alcohol consumption, or more recently, food allergies. It does not happen very often. The usual things can trigger it: anger or nervousness, red wine etc. which are rare.

I never really drank much in the last 25 years, I don't drink at all any more.

I have actively reduced and/or deleted all stress from my life in order to concentrate on health issues: I have no debt, no job, no worries (except this issue I am discussing here). I moved out into the middle of nowhere: no air/noise pollution, I bathe in well water and try to get outside everyday.

If I were to avoid the foods my doctor says that I am allergic to (eggs, beef, milk, cheese, and coffee among others) I would have very little to eat. However, I have noticed I feel better when I have less meat and more gelatin. I would hate to give up milk, I love dairy. Just shoot me if I have to give up coffee, I have done it before and I did NOT enjoy it. Meat and milk have a lot of tryptophan, I wonder if that is why I feel better when I have less of those foods.

In August of 2010 my appendix ruptured, but I elected to not have surgery. I have read that carcinoid tumors are very common in people with appendicitis. Since I would not let them cut me open, we shall never know. I had a colonoscopy in July 2011, everything was perfectly normal.

Now what? I will not expose myself to more radiation in the form of a CT scan. I suppose I could try ultrasound and MRI, those are safer, but less accurate.

Should I stress myself out trying to diagnose? Or should I just assume that I am experiencing some sort of carcinoid syndrome and change my life accordingly e.g. cut out meat, seafood (I eat plenty of oysters and shrimp), milk and other high tryptophan foods. Eat tons of gelatin?

Thanks for any and all help!!!

 

[Such_Saturation]

Have you ever tried avoiding all of those foods? Is the problem in the whole intestine or mainly the large intestine? And have you ever checked your vitamin levels?

 

[thebigpeatowski]

I strictly avoided avoided beef, dairy and coffee for six months. I basically lived on shrimp, scallops, oysters and a bit of fat free turkey and chicken and vegetables and some fruit and coconut oil. I felt great and lost a TON of weight, but all of the vegetables still came through undigested (that was in 2011).

I used to have issues higher up in my small intestines like bloating and indigestion, but thyroid meds and the daily carrot salad have completely cured that. My gut issue now seems to be from the ileocecal valve down. The area around my liver, gall bladder and pancreas hurts frequently and is noisy. It's like the chyme moves into my large intestine and all hell breaks loose.

I wonder if I have some sort of intestinal adhesions from the ruptured appendix?

I recently changed to low fat milk and added B vitamins to my diet. Perhaps I should go back to raw milk and no supps. I can't imagine life with NO milk and the B vitamins make my brain so MUCH HAPPIER. According to Cron-O-Meter I don't get enough B vitamins.

I am going to have my serum serotonin tested next week, can they test for vitamins too? Is that a blood test?

Thank you for your help.

 

[Such_Saturation]

Do you mean flare-ups like Crohn's disease or IBS? I think if it's a bacterial issue after a few months of milk and active charcoal it must settle itself. You can test for many different vitamins, some are crazy expensive though. Other than serum serotonin, you should look into prolactin levels because it tells you a lot about the serotonin and estrogen in your tissue.

 

[thebigpeatowski]

I had a colonoscopy and it was completely healthy, so I don't think its Crohn's disease, but to be honest I don't really know what Crohn's is.

I had alternating constipation and diarrhea for years with a few normal times in between. I know how to effectively deal with the constipation. so that no longer occurs. It's the diarrhea that is draining the life out of me.

I have never been formally diagnosed with IBS, however I have have all the symptoms that I read about online. I have seen numerous doctors, they all say some version of the same thing: that it's caused by stress or food allergies.

I was indeed VERY stressed out when my appendix ruptured in 2010. One could argue it was the most stressful point in my entire life, I was going through too much bull**** to even mention here, but suffice it to say I was the proverbial restrained lab rat with NO stick to bite. I knew then it was time for a total and complete change and I have worked very hard since than to get where I am today. I have edited and deleted anything and everything that I feel contributes to stress, including toxic people, toxic food, toxic environments and toxic debt. I'm simply not stressed out so that can't be the cause now, tho it could have definitely contributed in the past.

I had all the food allergy testing done and followed strict food elimination for many months. My loose stools, while far less frequent then they are now, did not entirely disappear. I slowly added various foods back in and learned that grains are not optimal for me, particularly wheat. I don't eat starch, except for organic popcorn popped in organic coconut oil with organic butter once per month or less, it's a rare treat. I also eat a tiny bit (couple spoonfuls) of organic stone ground rice flour dredged on the oysters that I pan fry in coconut oil weekly. I have never had a reaction to rice or popcorn so they appear safe to me. Milk has been fine for years as has beef, eggs and coffee. I honestly think food allergy testing is bogus because I don't show that I am allergic to wheat at all, but I clearly get gut pain from it. As near as I can tell, my current gut issues are not food related unless I eat some kinds of fiber, which can be irritating so I avoid those.

I used to think it was fructose malabsorption. I drank my OJ today at 7:00 a.m. along with several teaspoons of 100% pure fructose powder on my Greek yogurt and I have had no issues at all five hours later....so I don't think it's that.

I really don't think it is a bacterial issue. I think it is a serotonin issue and it is more frequent now than it has ever been.

My prolactin in March was 15.5.....which I guess would be better around 12. I have read that prolactin can fluctuate depending on the menstrual cycle...I really don't know much about it, but at 15.5 I guess I wasn't too concerned.

I'm still dumbfounded...

 

[mas]

Hi BigPeatowski,

I definitely have had gut issues all my life. IBS from adolescence, cycling with constipation. IBS is truly a generic term.

Lots of recent research has linked IBS to mast cell proliferation. Mast cells degranulate in a high estrogen environment and irritate tissues with histamine and serotonin. In order to prove the mast cell activation (diarrhea, flushing, rapid heartbeat, skin itching, etc…), very specific stains must be used after biopsy from endoscopy.

If you have had a previous gut biopsy, samples are usually saved in freezers for future tests, if you need them. If you did want to see if MCAS is a factor in your case, you would have to confer with your GP, and then get in touch with a MCAS doctor, Dr. Afrin, to do the proper staining technique.

Have you tried cyproheptadine? I have been on it for about two weeks, and it is working just fine so far my allergies are controlled by using it. I need more time to figure out if it is significantly lowering my serotonin though.

I know of a woman with CFS who took tests to rule out carcinoid:
Serum serotonin
Serum Chromagranin A
(She had high level serotonin, no carcinoid- by imaging MRI and CT studies, as well as a tiny camera that people actually swallow, and it takes pictures at various intervals of the esophagus right through the gut. WIld, huh? The best part of the camera is that it is non-invasive.

Good luck, I know how tough it is.

 

[thebigpeatowski]

Hi Megin...your posts are always so informative! I have never had a gut biopsy and, to be perfectly honest, I DETEST anything that seems remotely invasive. I even hate having my blood drawn. I guess this stems back to my childhood....I was totally traumatized by vaccinations and a tonsillectomy: I recall having four nurses having to use all of their body weight to pin my flailing body down, one had a hold of each limb while a doctor did the injections...not good. I will have to diagnose this issue without a biopsy. If my serotonin levels turn out to be very high, I might do an MRI or the camera thing sounds pretty safe too. Maybe my diarrhea will prove to be a good weight loss method! I'm kidding.

In July of 2011 I discovered a breast lump, went to the doctor and she told me to get a mammogram. Of course I said NO and so she absolutely insisted that I have a biopsy. I went home and read all about needle track metastisis and of course refused to have a needle inserted. Here we are almost three years later and I no longer have that lump, not sure where it went, it just seemed to dissolve on it's own. During this EXACT same time frame I had a high school classmate find a strikingly similar lump in her breast. Both of her parents are doctors and she boasted about getting yearly mammograms from the time she was thirty years old. I listened to her go on and on about how great it was they caught it so early blah blah blah....she died on April Fool's Day one year ago, leaving behind two beautiful young daughters.

We probably all have faced situations like this or know someone who has. I am not to keen on the direction "modern medicine" has taken and have become quite skeptical and distrustful, obviously. At this point no matter what I may find regarding my serotonin level etc. there is no effin way I would take the usual slash and burn route offered.

I opened a thread about hormonal diarrhea a while back...perhaps this is just estrogen related, after all I have cut waaaay back on my Progest-E dose. And Benadryl does help, although I now must take TWO pills instead of one to get a good effect. I have not tried cyproheptadine, been meaning to look into it. I'm so glad you are having success so far! I think it helped Blossom a lot too.

Thanks for listening to me ramble...

 

[Such_Saturation]

The cyproheptadine does work to slow down the intestine a bit (only when it's too fast). Also going starch-free will make the stools very dry without a good carrot salad and sugar intake. Have you ever considered environmental toxins (mold, metals)?

Check out the last paper in this topic: viewtopic.php?f=32&t=2871

Maybe check vitamin E, zinc, c reactive protein... I think some might help you better than I can here. But how did you survive an organ rupture without surgery?

 

[thebigpeatowski]

Thank you Such_saturation, I IMMENSELY appreciate all the help I can get. Lots of times other people have "new eyes" for a situation that I am blinded to.

I do take the carrot salad daily, it has been tremendously helpful with every other aspect of my digestion, but not the diarrhea. I have had mold allergy testing done and yes I am VERY allergic to mold. I can't tolerate any sort of blue cheese at all and I can smell fruit that is starting to turn from a great distance. I get a RAGING headache just from being in my brother's home, it smells quite musty. The moldy smell is quite overwhelming to me and yet nobody else seems to notice it. He and his wife both have chronic health problems and are addicted to pain killers. I wonder how much of their pain is caused by their living environment and stress, they're always sick and stressed out.

I live in the rainy Pacific Northwest, there are mold spores everywhere, but my house is newish and very dry. I have no carpets anywhere, so no environmental issues. However, I do think I need to have the well water tested...and also, I wonder if there is any truth to that whole coffee bean mycotoxin issue, anyone know? I looked into it a bit and came to the conclusion that it was marketing hype BS. That said, I did change to a different bean supplier a month or so ago. I also tried drinking a different milk, was drinking raw whole milk, went to pasteurized commercial 1% for three weeks. If anything, my diarrhea is worse so I went back to my beloved raw milk yesterday, I find it to be very soothing and FAR MORE delicious.

I had a hsCRP test done one year ago, it was .5 with a ref. range of 0.0-3.0, but I was on a high-fat/low-carb diet at the time. I thought that was an okay number, perhaps it has changed since then? I will test it again this week with my serotonin. Will also look into the nutrient testing...

I survived my ruptured appendix with IV antibiotics in the hospital for four days followed by a month long course of two different kinds of antibiotic pills, just to be sure. It was funny to watch the nurses reactions while in hospital: with every single shift change I would have to explain all over again that there were no sutures to check, they kept asking the same question over and over "you had a ruptured appendix and NO SURGERY?" Then they would recheck their charts several times with knitted brows.

I had bowel issues prior to my ruptured appendix (my son, at the tender age of eight, told me "I poop too much", that was 16 years ago).
It is getting worse.

Gonna go check your link now...thanks S_S

 

[HDD]

Have you tried RPPS? Juicing potatoes,letting the starch settle and scrambling the juice.
viewtopic.php?f=2&t=428&hilit=RPPS

I made it once and mixed it with chicken neck stock for my son. Someone had posted previously about it being anti-serotonin.

Cyproheptadine somewhat constipates me.

 

[thebigpeatowski]

Have you tried RPPS? Juicing potatoes,letting the starch settle and scrambling the juice.
viewtopic.php?f=2&t=428&hilit=RPPS

I made it once and mixed it with chicken neck stock for my son. Someone had posted previously about it being anti-serotonin.

Cyproheptadine somewhat constipates me.

Thank you Haagendazendiane...unfortunately I am too lazy at this point to make the potato juice scramble, I just don't have the energy plus I don't think I have the right kind of juicer.

Being constipated sounds divine to me at this point, today is May 12 and I have had diarrhea every single day this month except one. Most days it occurs multiple times. I quit taking any and all supplements three days ago thinking something might be irritating my guts, nothing has changed. It occurs almost every afternoon or evening, I don't have any pain or cramping, just VERY LOUD gurgling after a meal and then non stop runs. Occasionally I get sensations of pressure on my throat, feels like someone pushing on my thyroid...weird. My period is due in 5 days, I am kind of exhausted and desperately want to take my B vitamins.

 

[tara]

Hi, you may have ruled this out, but if the diarrhea has got a lot worse just recently, could it be a recent out of control tummy bug, on top of whatever else has been going on for a long time? For example, I got campylobacter a few years ago, and was very sick with it for a few days, but it continued/came back repeatedly for a couple of months, with diarrhea as the main symptom. I wonder whether you appendix resumed its normal functions after it got infected? I guess the long high dose antibiotics for appendicitis might have left your gut flora with less defence against such nasties? If it is something like that, maybe a couple of days of high dose activated charcoal might give you break?

 

[Blossom]

It's my understanding that from a conventional medicine standpoint if one is having symptoms of 'carcinoid syndrome' from a bowel carcinoid tumor that indicates that the tumor has metastasized to the liver. I am no expert by any means but did have testing in the past that indicated a possible carcinoid tumor of the bowel so I researched it quite a bit to figure out what I was going to do. This situation is part of what led me to discover Peat's work. Typically in 'medicine' people who have this carcinoid syndrome from a bowel carcinoid tumor are given five years to live. I'm not posting this to scare you. If you have had these symptoms on and off for years then it may not be a carcinoid tumor after all. My carcinoid syndrome symptoms started in 2012 but my doctor at the time failed to recognize them or even tell me about the test results. I guess she overlooked that one. Long story short is that after changing to a diet and lifestyle in line with Peat's research and adding cyproheptadine my carcinoid symptoms are gone. Conventional medicine uses cyproheptadine for carcinoid syndrome but in much higher doses than what I take. I think that the whole approach seems to restore the bodies capacity to heal and may account for someone like me not needing as much cyproheptadine as someone following a conventional medicine protocol. This is just my personal experience but I thought I would share it if it could be of any help. Also keep in mind I do not know for 100% certainty that I had a carcinoid tumor, I just suspected it based on the testing and symptoms. If memory serves me correctly the only treatment for a carcinoid tumor is surgical removal but if it has metastasized there is no point in doing that. For my situation at the time I felt medicine had little to offer me if I in fact did have a carcinoid tumor. I did consult with Benedicte from http://www.biochemnordic.com since she is recommended by Peat and I didn't want to totally go it alone so to speak.

 

[thebigpeatowski]

Thank you Blossom, no worries...your post isn't scaring me, I had already read that about the liver. Indeed, I have had gut issues off and on for years. What I am experiencing now is a little bit different. Unfortunately I have lost faith in doctors. I'm sure they aren't all bad, but I cannot seem to find one that knows what they are doing. I spoke with Benedicte two weeks ago.

 

[Blossom]

Thank you Blossom, no worries...your post isn't scaring me, I had already read that about the liver. Indeed, I have had gut issues off and on for years. What I am experiencing now is a little bit different. Unfortunately I have lost faith in doctors. I'm sure they aren't all bad, but I cannot seem to find one that knows what they are doing. I spoke with Benedicte two weeks ago.

Great! Another forum member had a similar concern and emailed Ray Peat about it. It's posted in the email depository here on the forum. I'm sorry I don't have a link. It seems conventional medicine has little to offer, once again, I'm sorry to say but I think that there is definitely hope through studying and applying Peat's work to turn the situation around. I've personally known of patients in a medical setting that had carcinoid tumors and didn't receive any anti-serotonin medications what so ever so when Peat comments about medicine not really knowing what to do for this situation he is exactly right (in my experience). Part of the problem I think is all the confusion surrounding serotonin. I know I've been much better off taking this approach. I at least feel confident that the things I'm doing now are moving me in a positive direction rather than the path of rapid decline I was going down before. Keep us posted on your progress!

 

[thebigpeatowski]

Can you tell me where to buy cyproheptadine? I guess I could try to find a new doctor...

 

[Blossom]

Can you tell me where to buy cyproheptadine? I guess I could try to find a new doctor...

It's easier to find online if you search for periactin. I got lucky and got a script from a sweet NP at work(I should give her a dozen roses). I've never had to order cyproheptadine online but I thought I saw it on www.mymexicandrugstore.com several months back. Hope that helps some.

 

[Mittir]

I strictly avoided avoided beef, dairy and coffee for six months. I basically lived on shrimp, scallops, oysters and a bit of fat free turkey and chicken and vegetables and some fruit and coconut oil. I felt great and lost a TON of weight, but all of the vegetables still came through undigested (that was in 2011).

I think you can retry that seafood, turkey, chicken and fruit version.
It is not clear what is causing your problem. You can rule out different possibilities.
If you go fat free for few days it will give you an idea if gallbladder is a problem or not.
I think OJ is problem for many people. It is worth experimenting not to have OJ and
other pectin rich fruits. I have bad experience with cypro. One of the side effects
of cypro is upset stomach. I know some type of antihistamine lowers acid secretion.
I have read cypro inhibit different type of histamine. I am not sure if it inhibits
gastric acid secretion too. I have also seen another forum member complaining
upset stomach after one dose of cypro. I used cypro for 2 weeks to build tolerance.
But it did not work. I suspect Benadryl can have that effect too. Hypothyroid people usually
have low acid secretion. I have always found fresh meat,especially beef is very
easy on digestion. Fresh shrimp is also easy to digest. But seafood builds up
histamine very quickly, within hours. I can only safely eat very very fresh seafood.
I think most people cant digest vegetables unless it is over cooked.
I know that cypro and other anti-serotonin drugs supposed to improve digestion.
Diarrhea causes electrolyte imbalance. I think fixing digestion should
be main focus , even if that causes temporary decrease in vitamin and mineral intake.
You can use pure sugar as carb intake for few days to see if OJ is a problem.
Fruit+vegetable broth can supply a lot of vitamins and minerals found in OJ.
Carrot can be a source of problem too. I think they add strange kind of chemicals
to carrots. I can only tolerate carrot i buy from a particular store.
When it is comes to digestive problem, every food should be a suspect.
You can also avoid gelatine for few days.

 

[thebigpeatowski]

Thank you so much for your thoughtful reply Mittir...hmmm, I did eat a LOT of shrimp recently. It's such a good source of protein and low fat too.

I have basically cut out everything. Today so far I have only had 2 oz. of beef, very salty home made bone broth, one Mexican coca cola and some activated charcoal ...next I'm gonna try some organic low-fat uncured turkey breast and S.Pellegrino mineral water.

Thanks again!!!

 

[thebigpeatowski]

Hi, you may have ruled this out, but if the diarrhea has got a lot worse just recently, could it be a recent out of control tummy bug, on top of whatever else has been going on for a long time? For example, I got campylobacter a few years ago, and was very sick with it for a few days, but it continued/came back repeatedly for a couple of months, with diarrhea as the main symptom. I wonder whether you appendix resumed its normal functions after it got infected? I guess the long high dose antibiotics for appendicitis might have left your gut flora with less defence against such nasties? If it is something like that, maybe a couple of days of high dose activated charcoal might give you break?

Hi tara...I am not sure if an appendix can resume normal function after it bursts, I just don't know. When I had my colonoscopy (almost a year later) they took a picture of the opening to my appendix and it looked perfectly normal, like nothing ever happened. I guess it burst further down the tube? Who knows? I am having a bunch of blood work done, will work on bad gut flora next....thanks!