MC and Histamine

draperygoddess · Post by **draperygoddess** » Thu Jan 26, 2012 2:51 pm

Thanks, Tex and Mary Beth, for the clarification. Although I can tie a few non-GI symptoms to gluten intolerance (headaches, fatigue, anxiety/depression), the vast majority of my symptoms are definitely of the GI variety. Lately, though, I feel like I'm on a roller coaster, trying to figure out what caused a reaction. I'm accustomed to the cycle of accidentally getting something I can't tolerate and waking up the next morning feeling like I've been run over by a large truck--THAT I can understand. But sometimes I feel like I need to go, but can't, even though the result is often norman when I do go. And even when I'm not having D, sometimes I will eat just a few bites of something and immediately the gurgles start. How is it possible for that to happen when the food hasn't even gotten to my stomach yet? Have also had a couple of episodes of "spurious D" recently, by which I mean, out of nowhere, no warning, no cramping, can't figure out what caused it. That scares me because it seems a lot like the "bad old days," when I never knew when it might hit. I've already eliminated gluten, dairy, soy (except for what's in my creamer in my one cup of coffee each morning), all potato products, all GF baked goods, processed corn foods (I can handle corn syrup and regular corn just fine, but Corn Chex and tortilla chips don't agree with me), all peanut products, fresh citrus, and broccoli. If I knew what the problem was, I would stop eating it, but I can't get a handle on it. Is it possible to have a mast cell reaction that doesn't involve hives, respiratory distress, etc., or is something else going on?

mbeezie · Post by **mbeezie** » Thu Jan 26, 2012 3:23 pm

That's a hard question to answer. There's so much we don't know about mast cells. Mast cells can dump hundreds of different mediators, not just histamine, and they can all cause problems of various sorts - histamine is most studied. If you don;t have many other symptoms, you might still be dealing with food sensitivity. It's possible that your issues could come from supposedly benign foods like chicken or rice (we've had members sensitive to those things). When the immune system is revved up, you could be reacting to any number of things. I wish I had more answers for you.

You could try an elimination diet with just a few foods that you think are safe (3-4 at most) and see if you could get things under control, and then add foods back one at a time. If you do this you should also get off all non-essential supplements etc. Sometimes all of the things we take to control the problem can actually contribute to the problem. Have you thought about MRT?

Mary Beth

Post by **tex** » Thu Jan 26, 2012 3:42 pm

Cyanthia wrote:Is it possible to have a mast cell reaction that doesn't involve hives, respiratory distress, etc., or is something else going on?

Sure - I think it's possible. IMO, that's a non-systemic mast cell problem - Mast Cell Activation Disorder, (MCAD), which may be mostly limited to your digestive system, (at least IMO it can be limited mostly to within the GI system). As Mary Beth mentioned, mast cells can produce all sorts of mediators, such as cytokines, for example, which can cause significantly different results, (compared with histamines).

They can also release TNF-a, which, in turn, can stimulate the production of prostaglandin, collagenase, and neutrophils. They can also produce interluken-4 and interluken-5, which can affect the performance of eosinophils, and there are many other possibilities, as well. IOW, the effects can be extremely varied, depending on circumstances.

You may have symptoms that only affect the GI system, and on some occasions, if a reaction is severe enough, you may have symptoms outside the digestive system. These quotes, from an article that Mary Beth has posted a link to at least a couple of times, do a pretty good job of describing the basics of what happens:

The human immune system has two parts, the innate, which yields the first line of defense against illness, always with the identical immediate response triggered by any invading pathogen, and the adaptive, which tailors a response to a specific pathogen. The innate system attacks the pathogen for the first few days until the adaptive response is primed. When the adaptive immune system is triggered, lymph nodes recruit T-cells, which proliferate and sensitize B-cells to produce very specific antibodies targeting the particular pathogen. The swelling of the lymph nodes is an indication that the adaptive immune system is active.

IOW, rapid responses are innate immune system responses, connected with mast call activation. The familiar T-cell response associated with MC, is an adaptive response, which occurs later, (because it takes much longer for T-cell mobilization to occur).

There is also the mast cell activation disorder. In this case either a greater or even a normal number of mast cells may be “twitchy” or too easily activated by stimuli and may even be activated by autoantibodies. For these patients, symptoms may appear from the release of mediators when a histamine threshold has been reached. If one thinks of a “histamine bucket” representing some critical level at which symptoms appear, then any addition to this “bucket” is a burden that commands attention. When some cumulative load from stress, environmental activating stimuli, endogenous histamine, and ingested histamine cause the bucket to “overflow”, then the appearance of symptoms can manifest. Patients whose symptoms wax and wane over time may fall into this category as their histamine “load” varies with circumstance.

But, of course, that's an earlier article, and we now know that the same scenario can occur for the various other mediators, and the "bucket" analogy should still apply. That's just my opinion, of course, but I see no reason why it shouldn't be valid.

http://alford.grimtrojan.com/Mast_Cells ... isease.htm

Tex

draperygoddess · Post by **draperygoddess** » Thu Jan 26, 2012 9:38 pm

I don't think I would even be considering the possibility of a mast cell issue were it not for the fact that I'm not always reacting to the same things. I can eat "safe" foods one week and be perfectly fine, then out of the blue I'll have an upset stomach for no apparent reason. Without an endoscopy, I have no way of knowing if there is damage to the stomach or small intestine, which would be an indicator of why I sometimes have such quick reactions. I am willing to do a more restricted diet, but I'm not sure what to restrict it TO--I eat lots of rice and chicken now, though not as often as I did when I was first reacting. I'm thinking of trying benadryl and seeing what happens. Oh, and as an aside, my regular seasonal allergies have kicked into gear this week (runny nose, itchy ears, congestion), so IF it was a mast-cell thing, that might make a difference.

Mary Ann, I haven't seriously considered MRT due to the expense. I completely wiped out our flex account with my colonoscopy last year (insurance didn't cover all of it, so we had about $3000 we were responsible for). It will be awhile before I have enough in there to do any more testing. I was hoping to figure this out on my own, but if I don't, I may do more testing in the fall.

Lesley · Post by **Lesley** » Thu Jan 26, 2012 10:21 pm

Cynthia,
How I sympathize, although I have not had D in a while. I am just happy when I achieve a BM.
But I never know what is going to affect me. I can't eat chicken and rice. They both seem to do me in. Food hurts like the dickens going down, and causes horrible gurgles and rumbles, cramps etc., within a second of hitting my stomach. And I never know what will cause it. Things that seemed benign yesterday cause horrible pain today.

And MRT testing is out for me too. Too much money for the time being.

Wouldn't it be nice to know how to deal with this stuff?

jmayk8 · Post by **jmayk8** » Fri Jan 27, 2012 10:25 am

so i just went to the restroom and noticed I have a red heatrash looking rash on my rib cage and stomach, all down my sides and back. what is that??!! a histamine reaction to something?

Post by **tex** » Fri Jan 27, 2012 12:58 pm

Probably.

Tex

draperygoddess · Post by **draperygoddess** » Fri Jan 27, 2012 1:14 pm

Jenny,

Is it possible you're allergic to benadryl?

jmayk8 · Post by **jmayk8** » Fri Jan 27, 2012 2:06 pm

could be, i have had a lot of cramps and D for the past few days. i think it's a new intolerance that i just can't pinpoint. I have an my MRT test coming up, so i am def looking forward to that!

mbeezie · Post by **mbeezie** » Fri Jan 27, 2012 6:29 pm

I didn't tolerate benedryl well, but I think it was an additive.

Good luck with your MRT/LEAP - look forward to seeing your results.

Mary Beth

Noodler · Post by **Noodler** » Fri Jan 27, 2012 8:07 pm

Zizzle when you say in your post:

When I heat up and sweat during exercise my face flushes, my thighs flush and itch, and I get sweat-filled mini blisters and hives on my trunk. I don't think I have major mast cell disease, just clusters of too many mast cells in certain places.

This sounds to me like a classic case of Cholinergic Urticaria which is something that made my life an absolute misery several years ago in conjunction with the undiagnosed MC. My GP just told me it was minor urticaria but I couldn't go in the sun, break a sweat or even have a nice hot shower without the heat and sweat setting off hundreds of intensely itchy hives. Antihistamines were some help but it is a waxing and waning condition and often sufferers can have years of remission and then it bloody well returns.

I'm not sure to what degree it may be driven by mast cells but it can look a bit like the nodules some develop with mastocytosis. It is so irritating because working up a sweat brings on the changes in the skin with the release of acetylcholine and this causes the immune reaction giving the condition its name of cholinergic urticaria: http://www.cholinergicurticaria.net/

Hope this info helps with getting on top of it.

Al

Gloria · Post by **Gloria** » Sat Jan 28, 2012 11:05 am

I have looked in three different stores for lactose-free generic Claritin and can't find any. Can anyone tell me if/where they've found some? I've looked at Sam's Club, CVS, and Walgreens so far.

Gloria

Joefnh · Post by **Joefnh** » Sat Jan 28, 2012 11:52 am

Gloria the Claritin reditabs are lactose free. These are the ones that melt on your tounge.

CLARITIN REDITABS (loratadine rapidly-disintegrating tablets)contain 10 mg micronized loratadine, an antihistamine, to be administered orally. It disintegrates in the mouth within seconds after placement on the tongue, allowing its contents to be subsequently swallowed with or without water. CLARITIN REDITABS (loratadine rapidly-disintegrating tablets) also contain the following inactive ingredients: citric acid, gelatin, mannitol, and mint flavor.

Joe

Gloria · Post by **Gloria** » Sat Jan 28, 2012 12:28 pm

Thanks, Joe. I think I saw those and hesitated because of the citric acid and mannitol. I could give them a try.

Gloria

susan · Post by **susan** » Sat Jan 28, 2012 12:51 pm

Gloria

Do you have a compounding pharmacy in your area? They might be able to give you the antihistamine additive free--don't know for sure. And compounded things can be more expensive.