Diet for Carcinoid

For three weeks I have been learning to follow a diet that is suggested for carcinoid patients. It is lower in two amino acids that are used to make the bio-active compounds that our tumors generate. The amino acids are tyramine and tryptophan. Tryptophan breaks down and increases the serotonin that our tumors create. 

Since I now can see that my tumors create excessive amounts of insulin; serotonin; Chromogranin A; histamines and others; I am trying harder to regulate how I feel.

For the low-tyramine diet I have been eating less of the following things: caffeine, chocolate, aged cheese, all cured meats, and pickled or smoked foods. One of the basic ideas in this diet is that foods gradually breakdown after we get them home, therefore the amount of tyramine increases as the food gets older. One nutritionist suggested eating all fresh produce within 48 hours of buying it. Also, either eat meat the first day it comes home or freeze it. Just putting fruits and vegetables in the refrigerator does not slow down the production of tyramine.

I can't quite eat everything  while it is fresh, but I have been eating less chocolate and drinking less caffeinated tea. (I don't drink coffee because I just don't care for it.) I have 1 cup of caffeinated tea in the morning and the others cups are decaffeinated. I also have only one soda per day. Today at a taco restaurant I got just one glass of iced tea, instead of the usual two. I have not eaten any ham or hot dogs for a month. At a restaurant, I did not chose the meal that had chicken with four cheeses even though it sounded good. I didn't know if they were aged cheeses.

Regarding decreasing serotonin, I have mostly been eating less turkey and chicken. We had our Thanksgiving in America, where a turkey dinner is traditional. I tried to eat only two or three ounces,but I was slightly ill on the next day. I had abdominal pain and diarrhea--which I have only had occasionally lately. So it seemed like there was a correlation between eating the turkey and having problems. If I had eaten my usual portion, I would have been sicker.

Researching a low-serotonin diet required me to look at the diets telling people how to raise serotonin---I guess it's good for some people! 

I have been feeling much better since I began following the diet. I do not have the weakness that plagued me from September 15 to November 15. Instead of having 40% to 60% of my energy, I am functioning at 80% of normal. Now I have to get over being so lazy, and get back to doing more for my family. They did so much for me while I was ill.

I will write more about this next later. If you are interested, a low-tyramine diet or low-serotonin diet can be researched on the Internet.

November 2013

How have you been this month? I'm glad I am better.

From approximately September 15 to November 15, I have been facing new challenges from carcinoid. My tumors have been producing widely varying amounts of either glucagon or insulin. The low blood sugar is frightening, but what I hate the most is the general weakness I have. I stayed home most days because I was afraid of falling if I went to the grocery store, for example. I really appreciate my husband for driving me to doctor appointments, and doing the shopping. 

I have been checking my blood sugar twice a day and giving myself Octreotide shots on a tight schedule every 12 hours. That has kept my sugars from wide variations. I had experienced sugar at 54 on October 3rd; 178 fasting on October 6th; and 59 on October 7. Once my internist saw that, he had me make sure to take all my shots and do it on schedule.
From October 14 through October 28, I gave myself shots every 12 hours, and the wide variations in sugar stopped. There were no exceptions. I am keeping a diary of my symptoms and what I eat. I noticed my face was red and I was hot and sweaty when I woke up, so I shifted my shots around so I was up at 4:00 am to have the Octreotide in my system before I went anywhere. Then I went back to sleep. It helped me tremendously for a couple days. Now I'm not sure it made a lasting difference, but it is something to consider when we are facing many symptoms. Find the best time of day to take your shots.

If you are interested in the numbers, my fasting sugar tends to be high, probably from genetics and from being on Octreotide. My fasting sugar on 2 regular shots ranged from 87 to 113. The day it was 113, I had eaten french fries at dinner the night before. I don't eat fries very often. 

Sooooo, having been successful at stopping the big variations in blood sugar by taking 2 shots per day, I decided to try 3 shots per day.  My prescription is written for 3 shots per day, just in case I suddenly got worse and needed to use more medicine. From October 29 through November 13, I took 3 shots a day and got these fasting blood sugars: 99-117. The last several days,  my fasting sugar was  110, 110, 117,112, 109, and 117. You can see why I went back to giving myself shots every 12 hours.

For a week I have been feeling much stronger. I have been to a play, shopping, and church services without needing my walker. Besides having the blood sugar more regular, I am feeling better all over.