Are there any risks of NOT treating mast cell issues?

Zizzle · Post by **Zizzle** » Thu Mar 08, 2012 10:33 am

I seem to be surrounded by people affected by mast cell issues nowadays. Call me crazy, but it sounds like the next big health fad taking hold (move over gluten sensitivity!). The Ehlers-Danlos Syndrome Community, many who suffer from POTS, migraines, etc, are all talking about it. Everyone's trying Zyrtec and Zantac together. It seems everyone's weird symptoms all boil down to mast cells!! Can it be?

My MIL is the strongest case of MCAD or Mastocytosis I've ever seen. Chronic hives, dermographia, flushing, hashimoto's, gluten intolerance, allergies, etc. Yet she only seems to medicate when her hives start to flare, and she certainly doesn't see a specialist for it.

I imagine mast cells may be one reason I still have mushy D some of the time, and pesky skin rashes, but is that enough reason to go after a diagnosis and take medication? I feel fine 95% of the time. Yes, I react badly to red wine or massive helpings of histamine-rich foods, but I don't see that as a problem worth medicating. Overall I do fine with a highly varied diet so long as I avoid gluten, dairy and most soy.

Is there any risk to ignoring my mast cell involvement? Will taking Zyrtec and Zantac minimize the proliferation of mast cells, or do they only suppress the symptoms? Will those meds help supress autoimmune activity related to the mast cells? Why isn't everyone taking Gastrocrom instead? It seems gentler on the system.

I hate taking medications of any kind, and I usually develop unwanted side effects. I tried Zyrtec last year for post-nasal drip during allergy season and I felt like a zombie all day, with horrible dry mouth and sinuses. I'd rather be myself than deal with that. Is that OK?

desertrat · Post by **desertrat** » Thu Mar 08, 2012 11:31 am

I feel for you! While I don't have any mast cell problems (praise the Lord!), I can see where you are coming from, since I hate taking medications too! Why compound misery on top of misery? And once you get side effects from a drug that is "suppose" to help you, then what? Another drug to help with the new side effects? Not for me, thank you. As miserable as gastro problems are, adding a fuzzy brain in not what I want, ever. And just as a side note, when I feel really lousy, I pray and read the Bible. In my opinion, this helps tremendously.

Mandy

Post by **tex** » Thu Mar 08, 2012 1:36 pm

Zizzle wrote:Can it be?

Yes, it appears to be true.

Zizzle wrote:Is there any risk to ignoring my mast cell involvement?

Probably there's no risk of fatality, or any other serious consequences, (other than the nuisance symptoms), unless you develop the symptoms of anaphylaxis.

Will taking Zyrtec and Zantac minimize the proliferation of mast cells, or do they only suppress the symptoms?

They do nothing to affect the proliferation of mast cells. All they do is to prevent the histamine released by the mast cells from finding a receptor, so that the allergic reaction can be completed. Therefore, they prevent the symptoms from developing.

Zizzle wrote:Will those meds help supress autoimmune activity related to the mast cells?

No, they only suppress symptoms that are a result of histamine activation. Mast cells contain many other types of inflammatory modulators, and H1 and H2 blockers do nothing to prevent them from doing their damage. That's why antihistamines don't work for everyone with mast cell problems.

Zizzle wrote:Why isn't everyone taking Gastrocrom instead? It seems gentler on the system.

Gastrocrom only helps to stabilize mast cells, to help prevent degranulation. It will do nothing to limit the effects of existing free histamine already available in the system, nor will it have any effect on high-histamine foods in the diet. Those foods will still cause problems for anyone sensitive to histamines. Since it's a mast cell stabilizer, though, it will also help to prevent the release of all the other inflammatory modulators found in mast cells, which can be a big benefit.

Tex

Zizzle · Post by **Zizzle** » Thu Mar 08, 2012 1:45 pm

No, they only suppress symptoms that are a result of histamine activation. Mast cells contain many other types of inflammatory modulators, and H1 and H2 blockers do nothing to prevent them from doing their damage. That's why antihistamines don't work for everyone with mast cell problems.

You reminded me of something I read about mast cells also producing other forms of inflammatory cytokines. Good to know antihistamines aren't a cure for that phonomenon. I think I'll stay off off the meds for now.

BTW, my rash is improving with hydrocortizone cream (although it started improving before I started applying it a few days ago. Hmmm...). It will be interesting to see what happens to it in Florida next week.

:vacationsign:

Post by **tex** » Thu Mar 08, 2012 2:05 pm

on the rash beginning to resolve. Maybe it jumped the gun because it caught wind of the rumor that you were getting ready to lower the boom on it. LOL.

Tex

mzh · Post by **mzh** » Thu Mar 08, 2012 7:07 pm

I took Zyrtec for several years while having diarrhea and it did nothing to stop my diarrhea. I was taking it for presumed post nasal drip. I quit taking it when every breath I took smelled like garbage - literally. Nothing changed for me when I stopped it - just the garbage smell! Luckily I was the only one who smelled it.

mbeezie · Post by **mbeezie** » Thu Mar 08, 2012 10:38 pm

Zyrtec is an H1 antihistamine and won't affect diarrhea but can help with extraintestinal symtpms of histamine excess. Zantac is an H2 and that is what is recommended for diarrhea. For most people with histamine issues using an antihistamine is enough. Mastocytosis and certain types of mast cell activation require more aggressive treatment because the they can progress into more serious forms of the disease. What we experience will not progress but rather be an annoyance when we expose ourselves to triggers. I couldn't tolerate zyrtec either, but claritin and allegra have been very helpful in controlling symptoms when in a flare.

Mast cells, along with other immune cells, are all loaded with preformed mediators (cytokines are a type of mediator, as is histamine). Different immunocytes carry different mediators. There are roughly 100 different proinflammatory mediators. Mediators/cytokines are what cause people to feel sick. When they are triggered they call things like smooth muscle contraction, edema, vasoconstriction etc. We are learninig more and more about cytokines, like the particular ones involved in cetain disease states (like IL8 and IL6 in fibromyalgia). People are put on strong antiinflammatory meds to control the symptoms but diet can play a huge role in controlling symptoms. The reason MRT woks so well, and why it was the turning point in my health, is that it measures what foods are triggering these mediators.

Mast cells are in the news more and more, but there is so much that we don't know. I expect someday it will be viewed as a spectrum disorder. Some will have minor symptoms that are annoying and others will be prone to more serious issues. It is important to understand what triggers mast cells to degranulate, like medications and lectins and other foods. I always got headaches and itchiness and had minor symptoms of histamine excess but the flu shot triggered a cytokine storm. Because of the serious anaphylactoid reaction I had I will never relax about my mast cells . . . I know what they are capable of. If you truly have histamine/mast cell problems then I think it is wise to be prepared with an emergency supply of antihistamines and epipen. Even though I feel great now and am in remission - not a hint of mast cell issues since last summer, I go nowhere without my epipen. So while you might opt to not take any meds on a daily basis, it's a good idea to be prepared.

Mary Beth

jme22 · Post by **jme22** » Thu Mar 08, 2012 11:05 pm

Zizzle,

If you do indeed have a MC issue, you'll know when (if ever) it's time to consider medication based on the (potential) progression of symptoms. Consider yourself (and your MIL) lucky that you don't require meds except on the rare occasion. Hopefully that will always be the case.

You wrote:

Call me crazy, but it sounds like the next big health fad taking hold (move over gluten sensitivity!)

The folks I interact with on the mast cell boards aren't dealing with the occasional itchy skin rash. They have lives that have been crippled by their systemic mast cell disease. They have blood disorders, neurological involvement, secondary autoimmune diseases and some even life threatening episodes of anaphylaxis. Medication isn't an option in these cases, it is a must.

As I discussed in a post from long ago, MC symptoms run on a continuum, ranging from mild (occasional hives/itching) to severe. (mast cell leukemia; aggressive systemic mastocytosis which is fatal.) For those individuals whose daily functioning is affected significantly by a systemic mast cell disorder, I think they would all agree; they could only wish their disease was a fad because fads tend to fade away, systemic mast cell disorders do not.

Julie

mzh · Post by **mzh** » Fri Mar 09, 2012 7:43 am

Thank you for the post, Mary Beth. It's a big help to me. I will take Claritin the next time I need an antihistamine.

It seems the higher the Entocort dose I take, the more I itch. From what you said, I don't think it's a mast cell problem but more likely a reaction to the Entocort.

Marcia

Kari · Post by **Kari** » Fri Mar 09, 2012 9:04 am

Very interesting topic. As some of you may have read, I'm now struggling with histamine issues. I had my LC symptoms very well under control last spring/early summer, then my BM's started to slowly deteriorate again. I had no idea why, and only this year when my nose started running non-stop did I take serious notice and quickly realized that it was histamine related. I got the Claritin reditabs, and within a couple of days my BM's had firmed up and my nose stopped running. However, being super sensitive to any kind of "medication", I started to react to the reditabs, and was quickly back to square one.

I had my acupuncturist check me for histamine intolerance, and sure enough, I was strongly reactive. I had a treatment with her a while back, but have been in the mountains for most of the ski season, so have not been back. I plan to go for more treatments when I get home. Meanwhile, I ordered Histame, and have been taking one capsule a day for the past 3 weeks, and miraculously it's working. So far, only positive effects. My nose is well behaved (not perfect) and my BM's are much improved. I'm also following a low histamine diet.

Mary Beth - I'm curious about which kind of Claritin you use? I've only tried the reditabs, since they don't have dairy, so before I buy one of the others, I was wondering about your take on this.

Love,
Kari

P.S. As I'm sitting here typing, I'm noticing that the skin on my hands has gotten so much smoother since my diet changes. The signs of aging skin seem to have reversed substantially since I dropped gluten, dairy, etc. (more than a year and a half ago)

.

mbeezie · Post by **mbeezie** » Fri Mar 09, 2012 9:26 am

Kari,

I am not dairy intolerant so I just used the tablets, but also carry RediTabs for emergencies.

Glad to hear the low histamine diet is working for you. And that's great news about your skin. As a dietitian i always pay attention to people's skin - their diet is reflected in theor skin.

Mary Beth

Post by **tex** » Fri Mar 09, 2012 10:46 am

Kari,

Thanks for the update. It's good to see that you've found the key to turn things around. I hope your success continues.

Love,
Tex

MBombardier · Post by **MBombardier** » Fri Mar 09, 2012 11:43 am

My skin is smoother, too, Kari. I have been having some trouble with pimples, but that is going away. I think it may have been a toxin release between finally and completely going off dairy and upping my coconut oil. I realized I wasn't consuming the 2T per day I thought I was, so I increased it.

Mary Beth, I have been taking a Zyrtec every day. I was able to drop the Zantac some months ago. With the spring allergy season starting up, I suspect that I will soon be switching to Allegra as even with the Zyrtec I am now experiencing some itching and my granuloma annulare is red instead of pinkish. I am also starting to have a recurrence of occasional heartburn. I hope that switching to Allegra will do it and I won't have to go back on the Zantac.

Julie, what is the address of the mast cell forum you go to?

Gabes-Apg · Post by **Gabes-Apg** » Fri Mar 09, 2012 5:38 pm

My answer is a bit mixed.

my belief is that any type of inflammation continuing long term is not good for our body, if there is inflammation then our organs and digestion system are not working to their optimum, and the cells are basically under constant stress.

on the other hand it depends, it depends on how bad the symptoms are from the histamine/mast cell issues and the treatments available, and the impact of the treatments in the long term.

for my histamine issues, the constant tachycardia was having a huge impact on my day and ability to work. pre MC I was not a big taker of medicines/pharmaceuticals, but i could not continue with a resting heart rate of 120, so meds it was. It is nice to be able to carry the groceries into the house on a hot day and not puff like a steam train and feel like i need an oxygen mask.
my body/adrenals do not cope with constant inflammation/stress so i have to take the steps, (natural therapy and meds) to reduce/elminate any type of inflammation reactions.

Gloria · Post by **Gloria** » Fri Mar 09, 2012 10:31 pm

Zizzle wrote:Why isn't everyone taking Gastrocrom instead? It seems gentler on the system.

One of the biggest reasons is that it is only available by prescription. Since most GIs don't yet recognize a mast cell problem, they don't diagnose it, and thus don't prescribe Gastrocrom. Those that do recognize it won't generally prescribe it without doing tests that confirm the diagnosis. The second reason people aren't taking it is that it's very expensive (comparable to Entorcort pricing) without insurance. Plus it's not available through an overseas pharmacies.

I've just listed the reasons why I'm not taking it and have been experimenting with antihistimines. I haven't had much success with H1 blockers, probably because I'm sensitive to the inactive ingredients. I've been avoiding Zantac and other H2 blockers because of concern about them lowering stomach acid, but perhaps it's time I experiment with one. I'm sure I would never be able to convince a doctor that an antacid isn't good for me.

Gloria