A few thoughts on MC and MCAD

[mbeezie]

Hi Everyone,

I've been doing a bit of thinking about the relationship between mast cell activation disorder and microscopic colitis. Mast cell activation disorder has not yet been fully defined (an international group is in the process of gathering that information) but having been on both support forums I see a connection between the two. There are some articles that have shown a relationship to mast cell activation and CC, prostaglandin E2 has been found in the watery stool of MC patients etc, and the stain for tryptase is now being used to show increased mast cells and this is being categorized as a form of MC (microscopic enterocolitis).

I've been thinking about some of the common symptoms that both groups report (besides diarrhea), like GERD, thyroid issues, nausea, bloating, Gloria's mysterious chest pains (which I also had), Tex's migraines, brain fog, neuropathy, people reporting D within an hour of eating a trigger food, etc. There is a wide variation in symptoms and not everyone gets the same symptoms in MCAD. I've also been thinking about the treatments. For example, aspirin therapy is often used in MCAD when prostaglandins are overactive, and Pepto has shown to work in some MC patients. Many people with MC use PPIs, steroids and H2 blockers and many report seasonal allergies and a seasonal effect in symptomology.

I have normal tryptase (indicator of the number of mast cells), normal prostaglandin and normal histamine, which can happen in mast cell activation - my mast cells just behave badly when triggered. The symptom that scares me the most is the feeling of throat swelling, but my doctors told me it was GERD (I now know better) and I want to point out that not everyone with mast cell disorders gets this symptom, it's just the primary symptom that kept me looking for answers. With mast cell disorders there are leakers and shockers. I am a shocker, meaning that my mast cells unload all at once for a big reaction. But many people are leakers, a slow release of mast cell contents - I suspect many with MC can be leakers. People who shock tend to chase after a mast cell diagnosis, but people who leak may never make the mast cell connection.

What I have been wondering is . . . . is it possible that MC is a form of MCAD? In both diseases lectins seem to be a problem (although the MCAD group doesn't yet embrace this, but lectins are known to cause mast cell degranulation).

Of course this is all just speculation on my part, simply beacuse I see a connection between these two groups.

Mary Beth

[tex]

Mary Beth,

Great post! From what little I know about both diseases, I totally agree with your views. Both these issues are much more complex than their official medical descriptions would lead one to believe. (Of course, the description of MC is the most vague, since it was made a couple of decades earlier, and for some strange reason, that description is never updated to reflect new discoveries).

While it is true that we have two nervous systems, (the primary system, and the enteric nervous system), we have only one immune system, so it seems rather intuitive that the syncronization/modulation of all the various immune system responses would have to be coordinated, and interdependent, to at least some extent. For example, during all the time when my gut was reacting to gluten, (and other food intolerances/irritants), and up until it finished healing, my classic allergy symptoms, (mostly hay fever), disappeared, only to return with additional pollen sensitivities, after my gut finished healing from the gluten damage. I have no idea what would have happened if I had taken an H1 or H2 blocker during my reactive/healing period, because I had no noticeable allergy symptoms, and I never take an antihistamine unless symptoms are present. IOW, maybe I was a leaker while I was reacting/healing, but prior to that, and afterwards, I was/am a shocker. I note that I sometimes get D, (for no obvious other reason), during hayfever season.

I have a hunch, though, that if the biopsy samples of everyone being tested for MC, were checked with the correct stain to reveal mast cell status/activation, as a matter of routine, it would be discovered that the connection between the two issues, (MC and MCAD), is much more common than thought, and another spectrum of responses/symptoms, would become elucidated.

Tex

[wonderwoman]

As I was reading these posts I was thinking , boy, this is way over my head. Don't understand what they are talking about. And yet something seemed to register with me. I did a Google search on "mast cell activation disorder" and found this test mentioned.


5-HIAA
An abbreviation for 5-hydroxyindoleacetic acid. Levels of 5-HIAA are assessed (by a 24-hour urine collection) as part of a standard workup for mast cell diseases in order to rule out the presence of carcinoid tumors, which can cause flushing and some of the symptoms of mast cell diseases.


My Endocrinologist ordered this test on me September 15 after my TSH & T4 came back normal and I asked, "Then why am I so hot, lost 10 lbs, have diarrhea, and can't sleep". All signs of hyperthyroid not hypothyroid. I am taking Levothyroxine for hypothyroid and thought my medication needed to be adjusted.

I had to wait a month for the 5-HIAA results and had myself so worked up because I read on the internet the test is to check for carcinoid tumors in the intestines. I had myself dead and buried. I was so relieved when the tests showed normal.

Took Penicillin Jan 6 for tooth abscess and that's when the D really became worse and saw the GI. It wasn't until Feb 12 that the GI said I had CC as determined by the colonoscopy.

Something I have on my "To Do List" is to get copies of all the lab that was done in the last 15 months just so I have them for my own records.

[mbeezie]

Wonderwoman,

Sounds like he had some suspicians of mast cell involvement, but the truth is, most docs know nothing about mast cell disorders. There are only 4 places in the country that treat it (Mayo, Brigham and Woman's, NIH and MD Anderson). True systemic mastocytosis is rare, but MCAD is beleived to be grossly underdiagnosed. A recent study on hymanoptera reactions (bee stings etc) showed that it was actually mast cell activation and those reactions are not considered rare.

Mast cell disorders mimic allergies and allergy symptoms. True allergies always utilize IgE (an immunoglobulin) before they dump their mast cell contents, the stuff inside the cells is what causes allergy symptoms. In mast cell disorders the contents in the mast cells do not utilize IgE, which is why people know they react but test negative with allergy testing. Mast cell reactions can be small, like itching or can be very big (anaphylaxis, except it's called anaphylactoid when IgE is not used)

Just in the last week I spoke with 2 people who probably have mast cell activation problems. A friend of mine told me he has to take claritin daily or his skin welts up when he scratches it (dermatographism). He's also intolerant to any perfumed soaps, detergents etc. And I know he has food intolerances he doesn't admit. The other incident was my hairdresser. I brought in my own hypoallergenci shampoo and she had a million questions. Turns out she's intolerant to many drugs, foods and beauty products. I don't know if either one has IBS, but I'd bet they do.

So this leads me to my next thought . . . we know that kids are developing allergies more frequently than in the past. And it appears that many people MAY have mast cell issues. What in the heck is triggering everybody?

Mary Beth

[Issy]

"I don't know if either one has IBS, but I'd bet they do."

Mary Beth why do you think that the two you mentioned in your post might have IBS...are allergies common to people with IBS?

Issy

[mbeezie]

Issy,

IBS is a very common symptom in mast cell disorders and it is very common in the general population. My friends seem to have some overactive mast cells based on their sensitivities, so I wouldn't be surprised if they also have some GI involvement.

People use the word "allergy" pretty loosely, meaning any sort of reaction is characterized as allergy. I have no idea if people with IBS have more allergies or mast cell reactions, but again I wouldn't be surprised if that were true because in both cases we may be talking about a hyperactive immune response.

Before my flu shot reaction (what triggered my illness) I had symptoms that hinted at mast cell problems but didn't recognize it. I started to have alot of problems wearing my contacts. My eyes would itch and turn red. I think I developed a sensitivity to the contact solution. My doctor ordered Patanol, which is a mast cell stabilizer (there are lots of mast cells in eyes). I also had bouts of GERD, which I never had (again, lots of mast cells in the gut). I started having wicked PMS, which was dismissed as perimenopause (tons of mast cells in the uterus and hormone changes are a mast cell trigger). I also developed seasonal rhinitis and was told to take zyrtec. My point is, what people often dismiss as another problem may in fact be mast cells getting activaed. For me, the mast cell gun was loaded and the flu shot pulled the trigger. As Polly pointed out in a recent post, vaccines are intended to cause an immune response, except for me it was way beyond normal.

Mary Beth

[Issy]

Mary Beth,
Thank you for the information about mast cells. Even though I have LC, my GI said that I have a very "mild" case of it and thinks that I may have IBS because other than raw vegetables I can't seem to determine exactly what is the cause of my diarrhea. It has become much less of an issue than it was 3 years ago when I was diagnosed with LC.

Even though I have never been able to correlate D with eating dairy, gluten, soy, eggs etc....which most people on here seem to have problems with (from at least one or more of one food), I have decided to go GF as well as dairy free. I am hoping this will put an end to the big D permanently. If it doesn't I may have to look more into this MCAD.

Although I really don't have much of a problem with respect to "allergies"....that is itching eyes or hay fever, I do suffer terribly with GERD lately. BTW I discovered something interesting today regarding GERD in women and will post that info under acid reflux.

Oh life is so complicated sometimes!
Thanks again for taking your time to reply,
Issy

[Gabes-Apg]

my take is that an allergic reaction is your body reacting

it can be
-anaphylactic shock
-asthma
-skin reaction
-eyes and nose
-digestion
-fatigue
-migraine

the triggers and the reactions are different depending on the mix. in the past if my digestion was playing up then my asthma would be worse if i went near a known trigger.

[tex]

Issy,

Be aware that when a GI doc tells a patient that they have a "mild" case, that "opinion" can be very misleading, because the degree of lymphocytic infiltration that a pathologist sees under the microscope, when diagnosing LC from the biopsy slides, has no correlation with the severity of symptoms. I believe that Dr. Fine even mentions that on his website. Some of the members here with the most severe symptoms, have been told by their GI docs, that they have a "mild" case.

Tex

[Gabes-Apg]

When i went for my first follow up with the GI, he said if there is no diarrhea you no longer have it! that was based on the fact that i had had 10 good digestion days. and was only eating about 6 different ingredients as gooey baby food