I have had two small carcinoids taken out recently.  They were found incidentally and are caused by the Atrophic Gastritis "which is thought to be autoimmune in nature".  I have a history of being very allergic to a lot of things and got partial relief through injections. When I switched to a different allergist, I retested and I was able to have my injections re-designed.  They only allow 5 injections/person and I needed 7, so they were prioritized.  I am 1 of just a few at this large injection clinic (1600 patients) who are told they need to stay on injections probably forever.  I could never tolerate steroids and have been on Zyrtec the minute it came out, 24/7. I cannot go without my antihistamine or I feel yuck, even after years of injections.  I have food reactions and indigestion with a achy gut most of the time.  I went to the GI, a specialist in IBS, and that is when the carcinoids were found.  I've gone to another to get them out. As for the carcinoids, I think they should be looking in the iliem but they aren't talking to me about it.

Okay, I think I happen to have benign (very small) carcinoids in my stomach due to my stomach acid disappearing due to the autoimmune process going on in my stomach.  I have Hashimoto's and it is related to that.  

I have mild coloring on my face occasionally with heat and no sweating.  I don't drink liquor in warmer temperature or I'll melt. I do gain facial color on a small glass of wine. Being a cold intolerant person, I enjoy that in colder weather.   I don't tolerate hot & muggy  weather very well.  I feel heat in my face from time to time or on my upper back but I don't get to see it since it may be inconvenient to get to a mirror.  It's not hot flashes as much as I can tell... no sweating and it doesn't spread from face to chest.

I've been told by my first allergist that I have an extraordinarily active immune system.   The allergist I have now has put me on Singular, Intal (can't take steroidal inhalers or they give me infections after about 7 days), albuterol, and zyrtec.  I've weaned off the singular and only use the Intal & albuterol inhalers PRN, which isn't often.  If I have a cold or I'm intubated, I get very inflamed very easily and I have very wet lungs.  So I use a nebulizer with the same at those times.  Zyrtec is my mainstay and when I really need more during peak environmental seasons, I either up it to 15 - 20 mgs or take Xyzal (5 mg).  

I've got a history of allergic reactions environmentally and foods since birth. My first asthma attack put me in an oxygen tent and I had excema all over my body. It became less and less until I outgrew it in my teens.  I still have a patch under my left knee that activates (gets itchy) from time to time.  I think it is because I've eaten something.

I've also been treated alternatively for environment issues.  This has included lots of vitamins, allergen extract, and food limitations.  I've been away from it for a while but just getting back to it again.

I'm telling so much because I just learned that Ehlers-Danlos patients... that's me... subtype III..... are thought to frequently have MCAD or Mastocytosis.  In the last year, I've had a tough time with lightheartedness, fatigue, and warm face (just slightly).  My muscles/tendons/ligaments seemed to have a mind of their own and I have many unanswered questions about why they spasm and why I've had to do alternative stuff to get them better rather than the usual.  I'm overall fatigued and mentally, I hate to admit it, sometimes I think my brain is Jello!   All gets worse when I have an active phase in my muscles.

I used to have lightheadedness when I twist my head left to right (not dizziness) but now I walk around with it.  I don't have it tonight though. I have heart palpatations, still,  after thyroid treatment and sometimes chest pain........ particularly when my lungs are acting up (it seems to muscles between my ribs start to hurt when my lungs feel a pressure (it's gotta be asthma....low level... but the muscle thing is new in the last year).  

I think my doctors are just hyperfocused on the carcinoids and not looking at a person who could have carcinoids
AND MCAD.  For a long time, I've looked at things that point to antigenic activity in the body towards its own parts.  And well I now have two incidences where it is proven.  

I have an eye issue that no one knows why it is degrades periodically ....... much like my stomach. Some guess that it might be immune related.  It is not rare like my gastritis.....  it's something new they are have seen!

So what I would like to hear from the members is how would you go about investigating this if you were me.  Carcinoid and MCAD in one person seems to be very unusual but I don't think it's impossible in my case.  Remember, I've been treated aggressively to keep my allergies in line.  So I think that might be covering things up here.  

With my medical profile, I am someone who has a lot of procedures and that involves contrasts and all sorts of stuff.  Just with my history, they identify me as a risk.  So I think it is important to figure out.  I did carry an epipen at one time.  Yet, I did react to a dental anesthetic which had epinephrine in it.  Sooooooo .... a very confusing case.

Please advise.  (I apologize for the length).

Hi Ccc, welcome to our forum!!   I hope I can help you!



Ccc, I've been investigated for the Carcinoide Syndrome 3 times now.  I have been in the hands of the highest experts here in Brazil, doctors who are renown to be the best authorities in Latin America on Carcinoids and that was after I was in the hands of the #2 authority.  My own doctor, a dermatologist who is a specialist in mastocytosis also had doubts and she sent me back to the #2 specialist to have him retest me.  Each and every time the investigations came back totally negative.  So, I understand most of the processes and enough about both diseases and I think I can help you gain some understanding about your sitaution.


Ccc, I've spoken with carcinoid experts as well as mastocytosis experts.  This is a sitaution of either/or.  The symptoms of both are so very similar that they confuse even the experts and if you read enough on the carcinoid sites you will see that the highest authorities in this disease will openly admit how difficult carcinoids are to find and to treat and to diagnose.  They are perhaps the most complicated tumors that exist within the human body because they are composed of endocrine cells and those cells are designed to produce hormones.  This is why our symptoms are so very similar and why some of us give our doctors such a run for their money!!

Yet, the reason why your doctors don't give a whole lot of value to your allergies is because they really are inconsequential when compared with the carcinoid tumor.  You are working with a cancer and it must be treated and dealt with properly for fear of it's mestastizing.

Yet, this things of your being allergic are part of a consequence of having a carcinoid for they produce hormones which create allergic reactions.   This is why my doctors had such a hard time with me for my reactions and even some of the behavior was similar to a carcinoid.  I get hypertensive with my anaphylaxis, but not a single one of these high level doctors knew masto well enough to know that it will break the rule of anaphylaxis for everybody knows that anaphaylxis ALWAYS occurs with hypotension - Masto breaks this rule.  Yet, this hypertension with a crisis episode is similar to the Carcinoid Crisis, which can be extremely dangerous because more often than not, it will put your blood pressure dangerously high.

Yet, you can indeed have allergies - real IgE mediated allergies and it's very likely that you do indeed have real IgE allergies since you were a child - many of us do.  However, the carcinoid will only make that "allergic" situation of yours worse because these tumors put out so many mediators, including histamine and serotonin, and other substances, that they will cause "pseudo-allergies" on top of the real, true allergies!   So, they impact your "allergic" situation 10 times worse!

However, to get down to the root of your question - could you have MCAD and Carcinoid together?   HIGHLY UNLIKELY!   There is no known case in medical history of one patient with both.  

Now, that having been said, I, for one, am not one to say never, for I have a case that is extremely complicated and rare and am so tired of my doctors saying, Wow, I've never seen that before!

So, what do you do?   YOU MUST GO TO EXPERTS!!!

Ccc, you need to know that for your own safety you must not convince yourself of having masto or MCAD for if you were to do this, and you tell ER doctors or something along this line when you are in crisis and they think you are in anaphylaxis, then they could give you a heart attack if they were to give you epinephrine.  Epinephrine is what a masto patient needs to get them out of anaphylaxis. However, for a carcinoid patient, who has such similar symptoms, this could very well kill you.  This is why it's so very dangerous when patients try to diagnose themselves, they unwittingly put themselves into harms way because they don't know enough about their disease and the mechanisms behind it.  

What is the TRUTH here?   You are a carcinoid patient.  You also have allergies.  

Okay, this much you know is truth and with this you must go.  As a carcinoid patient, you have the hopes of being 100% cured, did you know that?   If your doctors can find those tumors and remove them, then you can be 100% cured!  However, you must be very aggressive with carcinoid for once it mestastizes to the liver, the disease becomes inoperable and you must live with the "pseudo-allergic" reactions taking antihistamines and sandostatin-lar and whatever other meds carcinoid patients take.    Ccc YOU must take your disease very, very seriously for it is proven that those carcinoid patients who are aggressive against their disease are those who live longest.

My concern, is that you would get yourself lost in looking towards MCAD as a treatment answer when the high probability is that MCAD is not the answer.  This is how very confusing that Carcinoid syndrome/MCAD mastocytosis is for us when those of us patients who don't have any kind of spots are looking for answers.  Most masto patients who have no skin lesions end up going through a carcinoid syndromea investigation because masto is more rare than carcinoid and Carcinoid is more dangerous than masto.  

But, as I said, it doesn't mean that you can't be the very first case of both of these diseases in one patient.  However, you MUST FIND SOME EXPERTS to see you!!!   In order for you to be seriously investigated and ruled in or out, you need to see someone like Dr. Mariana Castells or Dr. Cem Akin in Boston.   There are two other doctors I would recommend, but one of them is at the NIH and I highly doubt you'd be able to see him, Dr. Dean Metcalfe.  The other doctor is Dr. Lawrence Schwartz in Richmond, VA.    ONLY THESE 4 DOCTORS have the capacity to investigate you and fully rule out masto in your case.  Your carcinoid will compete each and every time!!   Any lesser doctor will automatically dismiss masto due to the highly unlikely chance you could have both together!!  IT'S JUST THAT UNLIKELY that the vast majority of doctors won't even bother considering it, and I'm talking about doctors who KNOW masto.  But due to the extremely high complex nature of trying to differenciate between both masto and carcinoid if you should have the both together, you can NOT go to anybody but the very highest authorities.  

This is how complex this game is, CCcc, I've been there and know what I'm talking about and there are times when we really must go to the very highest authorities in the country!!

However, I'm going to suggest that before you consider going to Dr. Castells, Akin, Metcalfe or Schwartz, that you instead consider going to Dr. Richard Warner.  He is one of the very highest authorities in carcinoid and although I'm not certain, I believe he knows enough about mastocytosis to know how to differentiate between them.  If he feels that there is motive enough to suspect MCAD, I'm certain that he will personally speak with Dr. Castells, Akin, Metcalfe or Schwartz about your case.  These doctors don't putzy around with our lives!  They know the risks we are up against and they take their work very seriously.  If he feels that your doctors have not done a good job chasing down those carcinoids and that this is the basis for most of your symptoms, he will do it!   I've heard excellent reports of Dr. Warner and he's a fighter!  He will take your case and be agressive working with you to find out exactly what is going on.  If he feels that MCAD is on the line here, then I'll bet you anything that he'll personally get on top of this, for if this were so, then you would be making medical history of being the first patient with both Carcinoid and Masto.

So, Ccc, you MUST take your suspicions seriously, but I think that going to see the masto experts first, before seeing Carcinoid experts is going to lose precious time - time you can't afford to waste!   You must act aggressively and must to STRAIGHT TO THE TOP!!

Here is Dr. Warner's contact information.  You might want to consider writing to him through the carcinoid cancer foundation and see if he can help you.  Explain to him what you explained to us here.  He will do what he can to help you, I'm sure!

I hope I've helped you!

Lisa

Richard R.P. Warner, MD
Professor of Medicine
The Mount Sinai Medical Center
FPA Practice Associates

5 East 98th Street, 11th Floor
New York, NY 10029-6574
Tel: 212-241-4299
Fax: 212-426-5099
Specialty: Carcinoid/Neuroendocrine Tumors (all locations)

this person - Grace Goldstein is my contact at the Carcinoid Cancer foundation.  Write to her and ask for her help!!  She's great!

Grace Goldstein
Chief Operating Officer
The Carcinoid Cancer Foundation, Inc.
333 Mamaroneck Avenue, #492
White Plains, NY  10605
914-683-1001
888-722-3132
www.carcinoid.org




http://www.carcinoid.org/

Hi Seeking,

Welcome to the forum!  You've certainly been through a huge struggle, and now your daughter's having problems.  That's a lot to take.  Hope some people here can give you some ideas.

I have some questions and a couple of suggestions.  First of all, if your husband hasn't seen a mast cell disorder researcher/specialist, I would try to get him an appointment to see one, and possibly a joint one with your daughter.  You can check the names of some doctors people on the forum have used.  If you haven't organized copies of all their medical records, especially test results, it's a good idea to start a notebook and order those.

Have both of them been tested pheochromocytoma?  for parasites?  Have they been tested for excess mast cells in their colons?  H pylori?  Crohn's?  Celiac?

What, if any, medicines are they taking right now or have they tried?  One way to figure out whether mast cells are involved in their problems is to start a regimen of mast cell stabilizers (gastrocrom) and antihistamines (H1 and H2 histamine blockers).  Of course, run any new meds or supplements by their doctors first.  I don't know the dosages for children, but most adults on this forum take 10 mg. Pepcid or 180 mg. Allegra, twice a day.  Those block H1 histamine.  They also take 150-300 mg. Zantac or 20-40 mg. Pepcid, twice a day.  There are other mediators that can be causing problems, so often a mast cell stabilizer can be helpful, such as gastrocrom (2 vials, 4 times/day).  If prostaglandins are a problem, there are meds for that, too, but they can be irritating to the stomach, so Tylenol might be a first thing to try.  If he gets some relief from these, and you feel comfortable that carcinoid is no longer probable and the other things above are ruled out, then it's likely there are mast cells involved in some way.

Have you read about mastocytic enterocolitis?  Here is a link to my doctor's website, Dr. Scot Lewey in Colorado Springs, CO:
 
http://thefooddoc.com/mastocytosis_enterocolitis.

He and Dr. Phillip Miner (in Oklahoma) have been researching this disease.  It's also listed on the rare diseases website of the NIH.  There are published articles, too, that you can Google.

I went on Dr. Lewey's regimen and found it to be a near miracle.  In addition to the histamine blockers and gastrocrom, he recommends probiotics.  Specifically he likes VSL#3.  I used Align (available at most pharmacies and probably Sam's and Walmart, too).  I also used bromelain (2000-2400 GDU) before meals.  I prefer Country Life or Blue Bonnet brands.  It is derived from pineapple stems, so you have to be careful if there's any reaction from pineapple.  Another contributor to getting this under control was L-glutamine, which helps to normalize the mucosa in the digestive tract.  It's taken 500-1000 mg., 2-3 times/day.

The last thing is to stay on a low-histamine diet, religiously.  You can find it here:  

http://www.chronichives.com/pages/lowhistamine.htm  

There's an easy to follow chart their of what is permitted and what to avoid.

I'd recommend doing all of that at once to see if you get any results, but it's important to be cautious not to add more than one med at a time, in case of reactions.

I also wonder what kind of nutritional deficiencies have come along with this level of digestive disruption.  B12 and other deficiences can cause neurological and other symptoms.  Some people have problems even absorbing vitamin and mineral supplements that they swallow.

These are just thoughts I've had.  Hope you find something to help both of them.

Sounds like you have a plan beginning to form, and a good one.  I'm exhausted, but will try to write back tomorrow.

Ccc,
I would ask about those "clips" first, someone has to answer it. Do an xray if necessary to know for sure. Once that is answered I would go for the MRI.. with your history you need to make SURE there are no masses anywhere from the breast ca and the carcinoids. Once you have those answers you will be clear to look at other things. Time is of the essence with any type of mass, so please contact your DR.. and let us know how you are!

PS, cromolyn takes a few months to start working as well as it will. I dont think a trial will help you because of that--snd the cost is about 400$ s month with no insurance. You can always try nasalcrom--it has cromolyn in it, its over the counter, costs only about 5$ generic and wont hurt you if you dont need it. Good luck!!
Hugs
Ramona

Still Seeking
The reason for the Bone Marrow Biopsy isnt the liver--its to see if they find mast cells. IF you feel that strongly about a mast cell problem with your daughter, I would call her DR and have him prescribe the meds he mentioned to you. IF she does well on them--responds and gets better, thats a partial answer right there.
Hope you get some answers and help soon!!
hugs
Ramona

Still Seeking,

The reason we do biopsies of our bone marrows is because depending upon the form of masto, this is where it shows the most activity.  Yet, being that masto is a genetic disorder of the blood making system, this is also where it causes the most damage.  By looking at our bone marrows the doctors find out two major things:  one is for diagnostic purposes, the other is as a window into our overall health.  

Depending upon the form of masto they will find aggregates of abnormal mast cells.  Yet they can also find other pathological damage there and this helps them to see what the disease is doing.  My bone marrow did not show the MC aggregates, but my form is known for this.  My disease has to progress further for my tryptase is normal.  My form is also known for that.  But as time goes on, my tryptase should rise and with that rise the number of abnormal mast cells should too and so eventually they will see the mast cell aggregates there with BMBs.  However, we know that my iron levels are below normal and that I have lymphocytosis going on and so this gives my doctors understanding as to what the disease is doing to me and this is GOOD.  The more you know about your enemy, the better you can fight him!

As to the liver issues, if you will write me a PM and give me your email address I can send to you some articles which will help your doctors.  Liver abnormalities have been connected to both SM patients as well as MCAD patients.  But not too many doctors know this.  So the fact that your daughter is showing these changes reinforces the suspicion of MCAD.  My son also shows these abnormalities.  yet, we've found a focus of MC aggregates in his intestines so we know he has mastocytosis for only mastocytosis causes the MCs to aggregate like this.  He may or may not go for a BMB.  If his tryptase is low they may not ask for one, but I may push for it anyway because if my son is showing the low iron and the lymphocytosis as I do, then it's best to get a baseline measurement now so that as the years pass, they can measure how the disease is affecting his body.  Yet, my son is 20 years old and as much as I hate the idea of his going through this, he's old enough and mature enough to be able to handle these things better than if he were younger.  

I hope this answers some of your questions.


Lisa

Lisa, thank you for the suggestion.  I'm at the Brigham now and running into beaurocratic problems within the GI department.  I'm with a IBS GI guru who made the mistake of seeing me for digestive issues instead prioritizing surveillance for cancer. (I can't figure that one out because 5 years before he dx'd chronic gastritis, by biopsy)  He took 14 months to set up for the latest scoping.

Many people come form different countries to Boston for health care (and colleges!).  Or even people, locally, who go to the city for a consult.  It's different when it is that way vs using the specialists as your primary specialist.  If I did not have the health issues I have, I wouldn't be there.  I'd go for consults and then stay at the community hospitals.  Ah, the healthcare landscape is changing so rapidly.

Anyway, within that department are GI docs who have knowledge in mastocytosis.  I just think I should be with them for the carcinoid.  Right now I am asking them to ask pathology to look for mast cells......... and the GI docs won't answer me.  They just do what they want.  Can you believe my IBS GI doc doesn't even want to see me beforehand?  Poof... just go for the procedure.  And I have a good PPO plan.  

Thank you for your carcinoid referral though and I appreciate your time to tell me about your experience.  It helps to know someone else has this dilemma.  I know it is rare...... but so is EDS and so is having breast cancer at 34 and so Autoimmune Metaplastic Atrophic Gastritis......... and stomach carcinoids.

It's all zebra stuff.  I call it polyzebratic issues.  And while there might be a different name for all the different things seen in my body, I don't believe that they are not connected.  I just have a very hard time believing that.  I have taken care of my health for many years and ... well, good thing I did!  I guess it could have been a lot worse.

I wo't be going to New York.  I'm already going to Baltimore for the EDSIII stuff.  Even in Boston, there is a lot of difficulty getting the right report written for the specialists about EDSIII.  Sooo, since it gives me orthopedic issues, I'm using my energy  to go to Baltimore. I will have to settle the carcinoid issue here.  But I will keep Dr. Warner in mind for when I have the energy and orthopedic power.

Thanks Lisa.  I had my eyes on 2 GI's: Hamilton (new--mastocytosis interest/work) and Greenberger (senior).  Sometimes there is competition 'tween docs.  My immunologist is running tryptase as a starter.  He knows how allergic I am ... or was.  I don't think the food issues are given much credit since they don't present as outright quantifiable issues.  But waking up in the middle of the night wondering if I will make to the hospital on time just doesn't seem to count.

I think I will take it from a point of, I travel with an epi-pen, I have a carcinoid, I want to make sure I don't have both.  They may want to roll their eyes but now they will need to back it up because if I do have some form of masto .... then they will feel a little more responsible in being correct in determining this.  I may need to go to Baltimore first as I have found in Boston, with subtle, rare issues, you get more attention when they enjoy standing on their toes.  I don't mind being a case study and teaching.  But  I do find that they stand on toes when well respected researchers validate one side of the equation.  I just want an objective investigation.  And proof, if I can get it.

Already I have so much that is so rare.  But ignoring me because it is outside the box is not okay.  I've got a well respected immunologist who happened to be the 3rd one I've seen in the area (all tops in MA) and he was the only one who could do something......... because he listened.  It took several years before he could 'see' that corticosteroids give me infections.  I still get 'the look' from MDs that don't believe NSAIDS bother me and I can't take them forever.


BTW, I thought some forms of Mastocytosis do become neoplastic.

Best to you Lisa!