Revenge of the mast cells!

jme22 · Post by **jme22** » Mon Apr 16, 2012 5:38 pm

Greetings all,

A few months back I posted seeking advice on how to taper off Nexium. (My hemo wanted to run a test on me that is skewed when the patient is on a PPI.) So, I started my taper and within a few days all my GI symptoms returned. (Symptoms that had been well managed.) Not surprising given the rebound problems with PPIs, but this went beyond what I was expecting. It was as if I had never gotten all the GI symptoms under control in the first place. Alternating D and C, bloating, cramping, esophageal pain, etc. all back within the first few days of my taper. After this response, I decided that the best I could do for testing purposes was to cut my Nexium dosage in half.

Unfortunately, however, the damage was done and the GI flare caused all my other mast cell symptoms to flare as well. (The mast cell specialist I saw says this is probably related to either a) increase in acid production which triggered the mast cells to degranulate or b) the response of the mast cells to having the medication withdrawn.) Either way, I ended up in a big old mast cell flare...painful/swollen joints, facial hives, burning lips/mouth, itchy throat, GI discomfort, skin lesions, etc.

I've been trying to get the flare under control with increased anti-histamine use and also short doses of Prednisone. It's been slow going to say the least. I saw the allergist last week who is supposed to be managing my mast cell issues. I explained to him what had occurred and that I was still struggling to get the flare under control. Though I had in hand a recent email from the mast cell specialist outlining his suggested course of action (medication) to get the flare under control the allergist went in a completely different direction.

He put me on a strict elimination diet for 2 weeks in an effort to determine what is triggering my symptoms. The diet consists of :

turkey/chicken/lamb; rice; potatoes; rice cereal, rice milk; a few vegetables, a few fruits and fruit juice.

So I started the diet today. (Substituting tuna for meat.) This AM I had gluten free Rice Krispies and rice milk with some blueberries. Keep in mind that I have never had GF Rice Krispies or rice milk. (Trouble, right there!) After I ate, my throat and tongue started itching. Then my lips started to burn. (All classic mast cell responses for me.) I took some Benadryl which gave me some relief. Along came lunchtime and I has some tuna with asparagus. (Which never bother me.) About 30 minutes later, the throat symptoms got even worse plus I had facial flushing. This is when I had to go into my "ER" like response at home...Benadryl for itching, Ativan for associated tremors and Prednisone to try and keep the flare from getting worse. It's scary but I've learned to manage this type of response at home.

As I write this, I'm doing a bit better thanks to all the meds and don't have the feeling of my throat being quite as constricted though my lips are still burning and I have some facial hives. However, I know that as soon as I eat, the same response will start all over again. My theory is that there are certain foods that trigger my oral mast cell symptoms and then the mast cells become so "twitchy" that the mere act of eating sets them off again. I know this sounds crazy but after several years of watching this pattern, I'm certain that is what is happening. I've seen "eating" identified as a mast cell trigger on some lists, so I know I'm not alone in this.

So, my question is this: what point is there in doing the elimination diet if I can't even eat the few foods that are on the diet without reacting? Yes, I would like to be able to pinpoint foods that are causing me to react, but at what cost? There must be a better way.

Any thoughts?

Julie

Post by **tex** » Mon Apr 16, 2012 6:35 pm

Well, it's pretty clear to me that your body considers any food that you are not accustomed to eating, to be a"foreign invader", so any elimination diet that introduces "unfamiliar" foods is not likely to work. Your allergist may have good intentions, but obviously he doesn't understand your situation.

That's an interesting observation that discontinuing a PPI can not only cause the known effect that results in a rebound in gastric acid production, but it also apparently causes an undocumented effect that triggers an out-of-proportion increase in mast cell degranulation.

My theory is that there are certain foods that trigger my oral mast cell symptoms and then the mast cells become so "twitchy" that the mere act of eating sets them off again. I know this sounds crazy but after several years of watching this pattern, I'm certain that is what is happening.

Actually, that sounds right on target to me. Mast cell degranulation can easily become a self-perpetuating event, because it causes stress, (extreme stress, whenever anaphylaxis is present), and stress is known to be capable of promoting mast cell "reloading", (with inflammatory modulators).

Tex

brandy · Post by **brandy** » Mon Apr 16, 2012 6:42 pm

Hi Julie,

Saw your thread I can't add anything but I just wanted to send you some positive thoughts, Brandy

jmayk8 · Post by **jmayk8** » Mon Apr 16, 2012 6:46 pm

Julie,
I was going to buy gf rice crispies but i noticed it has BHA i think in it and I read somewhere preservatives like that are not good for mast cell issues. Chex may have it in there too. It may just be me though and my symptoms/reactions. I am sorry you are going thru this! I just started my cromolyn and my left leg/foot is tingling/numb and I am freaking out about that. These new and unkown symptoms/reactions are getting real old real quick!
Jenny

draperygoddess · Post by **draperygoddess** » Mon Apr 16, 2012 10:03 pm

Julie,

I have absolutely no words of wisdom, but let me say you are one tough chick! I don't think I could manage that at home. Hope you feel better soon!

MaggieRedwings · Post by **MaggieRedwings** » Tue Apr 17, 2012 5:01 am

Julie,

I too have nothing to add but want you to know that I admire what you are doing at home and surely want this to clear up for you.

Love, Maggie

mzh · Post by **mzh** » Tue Apr 17, 2012 7:37 am

tex wrote:Well, it's pretty clear to me that your body considers any food that you are not accustomed to eating, to be a"foreign invader", so any elimination diet that introduces "unfamiliar" foods is not likely to work. Your allergist may have good intentions, but obviously he doesn't understand your situation.

That's an interesting observation that discontinuing a PPI can not only cause the known effect that results in a rebound in gastric acid production, but it also apparently causes an undocumented effect that triggers an out-of-proportion increase in mast cell degranulation.

My theory is that there are certain foods that trigger my oral mast cell symptoms and then the mast cells become so "twitchy" that the mere act of eating sets them off again. I know this sounds crazy but after several years of watching this pattern, I'm certain that is what is happening.
Actually, that sounds right on target to me. Mast cell degranulation can easily become a self-perpetuating event, because it causes stress, (extreme stress, whenever anaphylaxis is present), and stress is known to be capable of promoting mast cell "reloading", (with inflammatory modulators).

Tex

This all sounds horrible!

Tex, is there a place here that explains mast cell degranulation and other related words and how to diagnose mast cell issues?

Post by **tex** » Tue Apr 17, 2012 10:29 am

mzh wrote:Tex, is there a place here that explains mast cell degranulation and other related words and how to diagnose mast cell issues?

There are quite a few discussions in the archives that contain details on diagnostic procedures, and related information, including links to references that go into more detailed explanations. The degranulation process itself, though, is not well understood. We know that many, many inflammatory modulators can be released, but very little research information is available on the details of why certain modulators are released in certain situations, and details are especially lacking on why the process becomes so inappropriately severe, for some individuals. Research has barely touched the tip of this "iceberg". For example, there are literally dozens and dozens of inflammation modulators, but we only know a little basic information about a few of the more common ones.

Tex

mzh · Post by **mzh** » Tue Apr 17, 2012 11:45 am

Thanks, Tex. I finally found a bit of it.

mbeezie · Post by **mbeezie** » Tue Apr 17, 2012 5:09 pm

Oh Julie, how awful:( When I was at my sickest my mast cells responded to any rapid change or something new. I agree that sometimes the act of eating is a trigger. I can remember muching on an organic dry rice cake and water and have a reaction.

I'm surprised he has you eating berries - they are generally not well tolerated for mast cell patients. Is the tuna fresh or canned? The canned kind has soy, which also not a good idea (neither is canned meat). Why not stick with an organic, plain rice cereal. Can you use Histame when you eat?

:bigbighug:

Mary Beth

Lesley · Post by **Lesley** » Tue Apr 17, 2012 5:59 pm

Julie - I am very reactive to tuna. Could that be what's doing it?

Sharaine · Post by **Sharaine** » Tue Apr 17, 2012 7:40 pm

Julie,
I don't have anything to add. I just wanted to say I hope you get well quickly.

Sharaine

jme22 · Post by **jme22** » Wed Apr 18, 2012 5:54 am

Thank you all for the words of support!

I've been taking Prednisone for the past few days so things are getting better but I still have to be very careful and eat only "safe" foods. When my oral symptoms are acting up it's very easy to trigger them and have a setback so caution is the word for the week!

Tex wrote:

Well, it's pretty clear to me that your body considers any food that you are not accustomed to eating, to be a"foreign invader", so any elimination diet that introduces "unfamiliar" foods is not likely to work.

I hadn't considered that Tex, but it's an interesting theory. I generally don't eat "unknown" foods, but the elimination diet forced that issue. As much as I hate the idea of having a significantly limited diet, it beats the alternative.

Your allergist may have good intentions, but obviously he doesn't understand your situation

Agreed!

Mary Beth wrote:

When I was at my sickest my mast cells responded to any rapid change or something new. I agree that sometimes the act of eating is a trigger.

Thanks Mary Beth...I appreciate your input. Eating as a trigger sounds absolutely crazy to the casual observer, but it definitely occurs. Knowing that you experienced it as well, makes me feel a little more normal, at least on the mast cell spectrum! I went back through my old posts here and found that I had written about this very issue not that long after I joined the board, which was several years ago. It's been a pattern and unfortunately one that is not well explained by the mast cell specialist I saw. He essentially said that it's one trigger that causes the problem and then it just keeps getting reactivated. Honestly, I feel like it falls into one of those quirky mast cell categories that just isn't well understood at this point. But it always helps knowing you're not the only one who has experienced any one of the many weird mast cell responses. (And BTW I do believe it was the blueberries that set all of this off. Good call.)

About the tuna...agreed it's not a good choice for someone in my position. The diet is actually a lamb/turkey/chicken diet but I don't eat meat. So, the allergist said I could have tuna as my protein. I asked about the reactivity of tuna and he "poo-pooed" the issue altogether. (Mary Beth, thanks for the heads up on soy in tuna...wasn't aware.) I think this is an allergist who is likely wonderful with true allergic patients, but I definitely befuddle him. He buys into the MCAS diagnosis (from what he says) but then he tells me he has never seen a MCAS patient as sick as I am, with so many symptoms. (He should just spend some time on the mast cell health board and he would get a good look at MCAS patients and their wide variety of symptoms!)

So for now, it's eating only familiar foods and staying on the Prednisone for a few more days. I've learned from past experience that it's wise to get the symptoms under complete control before going back to "normal" eating. For now, the elimination diet is on the back burner. It will be interesting to see what the allergist says when I see him in a few weeks.

Thanks again for your support and suggestions. It was greatly appreciated!

I'll keep you posted.

Julie

Gloria · Post by **Gloria** » Wed Apr 18, 2012 11:09 pm

Julie,

I'm so sorry that you're having a relapse of your symptoms. I hope you can get control soon.

There are varieties of tuna which don't have soy in them. They are packed in water and are usually more expensive, of course. I believe they're called "Premium" and sometimes have a golden color of packaging. I avoid tuna because I tested reactive to it on the MRT test and because it's a high-histamine food, so I'm relying on memories of several years ago when I used to purchase it.

Gloria