Signs pointing to MCAD

Hello,
I recently found out about MCAD and stumbled upon this forum. I have been sick with chronic fatigue syndrome, orthostatic hypotension, fibromyalgia and hypothyroidism for about 2 years now. But I always felt that there was something more. My symptoms fit the criteria for the above things that I've been diagnosed with, but recently I have been looking more at MCAD as being the root of them.

I have always had seasonal allergies since I was a kid, but never to anything else. About 2 years ago I suffered a major panic attack (which I now believe to be a major histamine release) while doing an aerobics class at the gym. Ever since then my life has not been the same. I suffered months of debilitating anxiety and fatigue, as well as full body rashes. Finally, I "crashed" after doing the GAPs diet and candida cleanse (all fermented foods and slow cooked broths!) and ended up in the hospital. They diagnosed me hypothyroid. Then a couple months later my GP diagnosed me with chronic fatigue syndrome and fibromyalgia. I began a natural protocol to boost adrenal activity, which helped with my energy levels, but the food sensitivities continued to persist. I am also extremely sensitive to medications and supplements with fillers. I did an elimination diet and discovered I was histamine intolerant, so I cut out all high histamine foods. Soon after I discovered that I was sensitive to salicylates and sulfur. Didn't leave much on the menu.

About a week ago I ate a bit of chicken with tumeric and went into anaphylaxis for the first time. I got through it without any benedryl actually because I am so terrified to take anything. Since that day I have not been able to tolerate ANY food without a reaction. Even white sushi rice causes my chest to tighten and my throat to swell. Right now I am living off rice cereal made for babies but even then I get body pain and pressure in my head.

I went to my GP the day before yesterday and he ran all my typical panels. Said that everything looked great and that my thyroid is now fine. He gave me a PPI, which I have not taken for fear of adverse reaction. He then suggested psychotherapy *sigh*

My symptoms that are persistent:
body/joint pain- especially in the morning
headaches
GI upset
on and off constipation
itching
24 hour heartbeat awareness
brain fog
dizziness
blood pressure drops and chills (especially after eating- I'm FREEZING after I eat)
ringing in my ears
tightness in chest

When I have the allergic reactions its the minute something hits my mouth. My lips tingle and my tongue and throat feel swollen. My stomach turns and my head feels heavy. In extreme cases I will vomit or have diarrhea.Then my body hurts. This lasts for about an hour then I return to my normal feeling of crap :)

The weird thing is I have no fatigue unless I eat. I sleep fine at night and don't get sick very often. The biggest issue I am having right now are these crazy reactions. They also happen when I get too hot, or even in the car sometimes my chest will feel tight and my face will get hot. I never get hives or swollen lips so doctors won't take me seriously.

Sorry for the long post, I'm just at my wits end. Eating is so traumatic, I'm losing so much weight and I'm hungry all the time. Does this sound like MCAD? I have an appointment with an allergist next week who supposedly is versed in mast cell disorders, so I'm hoping for some answers at least.

Has anyone gone through anything like this? Any advice would be greatly appreciated!

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18 replies. Join the discussion

Hi Faith110,

I want you to know that I am not a doctor nor an expert in MCAD (also labeled MCAS), but I have just read my autobiography in YOUR story. I share EVERY single symptom that you have.

Yes, many many of us have gone through EXACTLY what you are going through. A disease/disorder that was thought to be rare (and I believe Mastocytosis is, but MCAS is NOT) has become prevalent all over the world. You are exactly at the same place that I was about 17 months ago. I couldn't eat, I weighed 141 pounds with my first attack. Over a period of about a year or so as my reactions became more and more frequent and more and more severe i finally went to a mast cell specialist and was put on an H2 blocker (I still can't tolerate ANY H1 blockers) and a mast cell stabilizer called Gastrocrom (cromolyn). By the time I got this established (it took 4+ months to even stop reacting to the meds I needed). My weight loss finally stopped. I weighed 89 pounds.

What you are explaining makes perfect sense to those of us who have been diagnosed with MCAS. And every time I read a story like yours, my heart breaks. No...it is NOT a life threatening disorder (except the anaphylaxis can be without an understanding of what you are dealing with) but it is a disorder that you can get under control with the right doctor and the right regiment of medications for you. And you can have a fairly "normal" life!! OK?

Here is the advice I was given: 1) MCAS is often diagnosed by what we don't have, and not by what we do have so it is important to rule out things with similar symptoms like pheo and carcinoid. These both are a simple blood tests that your doctor can order. 2) Go to The Mastocytosis Society website and read and read! It provides VERY important information and steps you need to take to help yourself. It also provides a list of US doctors that treat mast cell disorders...some only treat mastocytosis and some only MCAS and some both. If you can find a knowledgeable local immunologist ( I hope the allergist you are seeing can help you but they are hard to come by as MCAS is quite undefined and unknown). I would ask him to order a tryptase test and that will help define if you have Mastocytosis or MCAS. Those of us with MCAS have a NORMAL tryptase. This is where most docs get confused.....they feel if you have a normal tryptase, then you don't have a mast cell disease. That's NOT true. This is when I highly recommend going to a mast cell specialist (if you are able to travel) and not waste any more time. The Mastocytosis website is: tmsforacure.org ohhhhh....it also has articles and ER protocols to help provide information to bring to your doctor. If you have ANY questions, just ask. There are many MCAS patients and Masto patients on this site that are very willing to help and very well informed.

A few (hopefully helpful things). 1) Our body produces its greatest amount of histamine in the early morning hours. Many of us feel better as the day progresses and we have more meds in our systems as the day goes on. 2) You sound a lot like me as far as your food intolerances. I have more problems with tyramines than even histamine foods. You may want to check out tyramines....these include cured things like bacon, ham, cheeses, etc. OK? 3) Many of us have autoimmune disorders (but not all of us)....I have Hashimoto's thyroiditis (and am hypothyroid) 4) There are a lot of us who have orthostatic intolerance of some type. I have a diagnosis of dysautonomia and a tentative diagnosis of POTS by a mast cell specialist....they are studying the possible connections of the two disorders (MCAS and POTS). IMO this very likely explains your feeling of being freezing cold. You may have some kind of autonomic dysfunction.....or it can be your mast cells acting up too! I am the same way.....I get freezing cold and my body temp can get as low as 96.0 degrees. The only way I can get warm is to take a bath (not to hot as mast cells react to heat too!) 5) If you can, keep a food diary and include all of your reactions. This is important. And remember....you have mast cells everywhere in your body and this is why your reactions are so varied!! (And also this is why doctors think we are hypochondriacs!!)

If you are as reactive as I am (and it sounds like you are), I can not tolerate ANY fillers, dyes, or preservatives in any of my medications or my food. I have to eat all fresh food. I only eat 5-6 foods and have for 17 months. It's amazing what you can make out of six things! :) I can't tolerate baby rice cereal because it usually contains citric acid. It also has preservatives. I use granulated rice cereal. It's a hot cereal and is just called Cream of Rice. We are all different but this may help. I am intolerant to benedryl but MOST mast cell patients are NOT. Benedryl is the usual "go to" drug to prevent full blown anaphylaxis. If you decide to try it, try to find it in it's purest form....most use the gel caps...some can tolerate the liquid and like it best because it works so fast (I think it does contain critric acid though) but that may be ok for you. WHEN YOU TRY ANYTHING NEW, ONLY MAKE ONE CHANGE AT A TIME AND JUST PUT A "PINCH" OF IT INSIDE YOUR CHEEK AND SEE IF YOU START ITCHING OR BURNING. This will save you lots of agony!! :)

You are in what we call a "flare"....your mast cells are so hypersensitive that everything that you put in your mouth will cause a reaction. Be sure to drink lots and lots of water....not COLD and not HOT....just room temperature. If you can tolerate homemade chicken broth, boil a chicken and just sip the broth...very little at a time. (SOme of us can not tolerate chicken but some can). But the broth contains all the nutrients you need for the day. Eat a VERY small amount of food at a time and puree everything and anything you can tolerate. Right now, you are reacting to the simple process of your body having to digest your food. This is why your body gets so tired.......it feels like it has just run a marathon.

I am sorry this is so fragmented....it's late, but I wanted you to know you are NOT alone and what you are experiencing is VERY real. My mast cell specialist would say, "Can anyone be so unlucky to have sooo many disorders/ illnesses" or is there a common denominator that explains ALL of the symptoms and chronic conditions." YOU are right on when you made the comment....this all seems like it could be interconnected.

One other thing....HAVE YOUR ALLERGIST PRESCRIBE AN EPI FOR YOU TO CARRY WITH YOU AT ALL TIMES!! What you are explaining about your throat feeling swollen and being itchy as well as having GI distress is ANAPHYLAXIS! (See the explaintion and different levels in the printable pamplet on the tms website.) OK??

I am not sure, but the Canadian Mastocytosis site is also an excellent resource if you need more information.

I know I have missed many things and again, I apologize for the lack of organization of my post. I know others will fill in and correct my mistakes!

Take care..........keep asking questions and be VERY careful until you get to the allergist and get that epi filled, ok? Hugs to you.......

If you feel brave enough and can get a small enough amount of an H1 and an H2 blocker, try one at a time. Claritan and Pepcid are the most benign and the least reactive with other medications. You may need more but it would be quite "telling" if you tried the Pepcid first and it helped! Then you would know it is most likely mast cell related. It's great you are aware that salicylates and sulfur are triggers for you (as with many mast cell patients).....be sure to read all the labels on any meds....law doesn't require ALL of the ingredients to be listed, but most of what you could trigger from is listed under the "inactive" ingredients. If you know the pharmaceutical company and the dosage, you can go on PubMed and it will give you the ingredients of the different mg. dosages and what inactive ingredients are in each of them. I wish you the best!!

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I forgot one thing (probably a lot more than one thing)...but we require rather large doses of H1 and H2 blockers to keep our symptoms "to a minimum"....maybe someone will chime in here and give some examples of the H1 dosages that are used with the different blockers. With the Pepcid (H2 blocker), I use 40 mg. when I get up and when really reactive I will take 20mg. before meals. Some take 40 mg. twice a day. For me that is not enough. I have severe stomach pain and it completely controls the pain when i take it before I eat as well as when I get up. :) Take care.......

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Medicalmess,

Thank you so much for your reply! It is so refreshing to know that I am not the only one on earth with these wacky reactions. It's so stressful to feel like a ticking time bomb that could go off at any time! But its a catch 22 because the stress and anxiety also cause the allergies to get worse :(. I don't react as badly to smells and environmental stuff as I do to food. It's like my body sees food as the enemy! I have been so paranoid to put anything at all in my mouth, and of course everyone around me including my GP thinks I'm crazy and need therapy.

Fortunately the allergist I am seeing is both an allergist and immunologist. I found him via one of the other mast cell boards, as I suspected this when I first learned of it. I had my thyroid checked last week, and thankfully it is now normal. I'm going to talk to the allergist and request all the tests that you suggested.

My question to you is, what foods are you able to eat now? Also, are you feeling better now that you are on the medicine? I notice that 90% of my CFS symptoms disappear when I don't eat, but I know I have to eat eventually. Would you suggest eating in the evenings to avoid a more intense reaction? Also, do you find that this hyperactive state eventually calms down a bit? I'm thinking I may give the pepcid a try. Do you find that it lowers the intensity of your reactions? Anaphylaxis is so scary. I've only gone into full blown twice before (tumeric and chicory root) and its not something I want to experience again. How long did you go before you were able to eat semi-regular food again?

Thank you so much for your help! I have the benedryl (dye free gel caps) and plan on breaking it open and "cheek testing" it to see if it agrees with me, until I can get to the allergist and get the right meds and epi pen. It sounds like I have some more rough times to go through, but its comforting to know that there is a light at the end of the tunnel. Thank you again!

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Hi Faith11o,

I hope this finds you feeling better today! After reading your post again, I feel so bad that I recommended chicken broth!! oh my!! Here it was one of the things you had been eating right before the big CRASH! :(

You are certainly NOT the only one that has all of these wacky symptoms (reactions)!! If and when you are up to it, there are a few other posts on here. One is called "Mast Cell Activation Disorder?" (It was posted by nucreashun). One called "Mastocytosis or MCAS? You may find it helpful to read some of these and see some other responses as well.

I know I mentioned this last night, but if you can keep a diary of everything you are able to eat (which is most likely very little right now) and also write down all of your reactions and when they happen) hopefully you will be able to establish more of a pattern as to how to figure out your triggers so you can avoid them as much as possible!

You asked some pretty hard questions (that's ok) :) and as I said, I am no expert, but I am willing to share what I have been through and what I have learned. Just remember......a big symptom I happen to have is brain fog (very common for us MCAS people) so I may say it more than once or just plain forget what I was saying....very frustrating!!!

You asked what I can eat. I eat: carrots (you may want to see if they are high in salicylates...I am thinking they could be), potatoes, sweet potatoes, Cream of Rice hot cereal for breakfast, and chicken. I used to eat zuchinni and summer squash and then I had trouble because of the seeds and my diverticulosis (sp?).... I can eat small amounts of chicken and on a good day, I can get by with baked cod (sometimes I will pre-medicate for the fish and I do this only because my protein levels are starting to drop) I am not advising you premed so you can eat what you want (many MCAS patients think they can do this). My mentor tells me "you will pay for it sooner or later and you will find in the long run, it is not worth it!). The reason I have not added new foods is because I just obtained a local doctor willing to work with me. Before that, I could not take the risk of trying new things because I was just to reactive. Because I still do not have an H1 blocker (and react to benedryl), it doesn't shut down as many reactions as some people who might be taking both an H1 and H2. The mast cells themselves have receptors so the mediators that are released can actually loop back and attach themselves to the same mast cells and cause an even stronger reaction...so our goal is to shut down the mediator release as quickly and as effectively as we possibly can. This may sound difficult, but as you become more familiar with "listening" to your body, you will get to the point you will know what to take when. Some people don't learn that (and maybe their reactions are more complicated) but IMO if you are diligent, you will know. It took me almost a year! I also had the idea (because I do not like taking any more meds than I possibly have to), that I would "wait" to see how the reaction progressed.
Well........by then I was in a heap of trouble and headed for the ER. In the past year, I have only been to the ER ONCE!! (except for a severe infection that landed me in the hospital). So......I feel like I am making progress. (I hope I am NOT boring you to death!!!)

Yes, I do feel better now that I am on medication.....(I am extremely under-medicated for the "average" mast cell patient). But, like you, I had immediate reactions to my meds and foods so I could cross them off and put them on my "trigger" list right away. The best "medicine" for this disorder is AVOIDANCE of triggers!! Others are not so fortunate and have delayed reactions. I will admit that my reactions are more delayed (ok I cheat once in awhile) since I have added a mast cell stabilizer, but they are also much less severe. I also now know what I can "get by" with and what will put me into immediate anaphylaxis.

As I said, I am not a doctor, but it wouldn't surprise me if your CFS is actually MCAS. Because MCAS is mostly thought of as a disorder causing "pseudo-allergic reactions" we forget the big picture. The big picture is THAT PATIENTS WITH MAST CELL DISORDERS HAVE CHRONIC INFLAMMATION!!! And you know what chronic inflammation causes....yes, PAIN! So, when you don't eat, your mast cells don't degranulate (spit out all those many many powerful chemicals into your body) and then you don't have pain. Make sense?? Of course there are other variables that add or subtract to that equation as well (like amount of sleep, amount of anxiety or stress on any given day, possible environmental triggers, etc). Will your mast cells always degranulate when you eat....NO they won't. You are in a highly reactive state right now and until you are able to keep those pesky mast cells "quiet" you will continue to react.

You asked me if eating later would help. Have you tried any meds yet? I know you said you bought some benedryl (usually benedryl is "kept" for emergencies), but IMO at this point, if you can tolerate it, you could call the allergist you are going to see and at least ask him if he thinks it would be ok for you to try it. Or you could start with the Pepcid because of your GI issues. Pepcid is an H2 and usually an H2 seems to help more with GI problems (but you do need the combination). There again, I would ask your doctor. (I use pepcid extra strength AC. It has the least amount of inactive ingredients that I know of.) Again...........chop it up and put a few "granules" inside your cheek and see what happens. Most mast cell patients take Zantac but it does have dye in it so I avoid it only because of that.

My husband was the one who came up with the best idea that worked for me as far as being able to eat. I still use it when I am in a "flare". Because I was diagnosed as having anxiety attacks and panic attacks, I had Xanax at home. (Ativan works the same). So when I would go to the ER they would give me IV Ativan. My mast cell specialist said..."they gave you the right drug but for the wrong reasons! "(who cares, right??) There seems to be a "group" of us patients that respond well to benzodiazapens (sp??) ....in other words Ativan, Xanax..and there are others. Well...come to find out, we have benzo receptors!!! Can you believe it?? So the Ativan and similar meds block those receptors!! (I know one doctor who wants to do a study on this to see if we have correlating symptoms or lab results!) :) So........if you happen to have a script at home, try it if your body is used to it. I took .5mg Xanax and I could eat small amounts of food!! On days when I am quite symptomatic, I do the same thing now. I also take it when my heart starts pounding and my pulse goes up and it stops the reaction! So....that is how I was finally able to eat something. (Smart hubby). :)

Yes, your "hyperactive" state will calm down. You will need the right medications and you will need to adjust your lifestyle and you will need more sleep, but they will calm down. And once they calm down, you may (or may not) be able to gradually even add exercise back into your daily routine. Remember, everything needs to be done one step at a time. I think of it as trying to "sneak things under the radar...i.e. the mast cells!) Then once established, you are the winner! A good example of this is when I tried to go on Gastrocrom (cromolyn). I thank my mentor with all my heart because I would have given up without her! And most patients give up way too fast....anyway..when I started on cromolyn I had a major reaction. I wrote my mentor. She told me to put that ONE vial in 36 oz. of water (not 8 oz) and then take ONE TEASPOON every hour! No......don't drink the whole thing. She kept telling me, "baby steps"....it took me over 4 months to work up to 4 vials a day. You are "supposed" to take two vials before each meal and two vials at bedtime. So I checked with my specialist and he told me, "Take it WHEN you can and HOWEVER you can!" I still can't take it in the morning without becoming severely dizzy and sometimes nauseated. So I drink it though out the day and it works great for me. And because you are in the same state I was in, you may need to do the same. But...you WILL get better. The other thing my mentor told me is that, "Your flares will become less severe and shorter in length as you learn how to better control your symptoms." And she is right!

You are right..anaphylaxis is scary! It's something you wish noone would ever have to experience. If you haven't checked out the tmsforacure.org site yet, please do so. It has an ER protocol. Yes, there may be meds on there you can't take, but work with your doctor to "tailor" it just for you. That way the ER will know exactly what to do when you arrive. Keep it with you at all times! Wrap it around your epi pens or (I) put it into a big bright red 3 ring binder along with the name of my specialist, my diagnosis, pamphlets that explain MCAS, and the different levels of anaphylaxis and how to treat them...etc. The tms site also has a 24/7 line that goes to a board member who will call an "expert" to help your doctor know what to do in an emergency. A medical bracelet (after diagnosis) is critical as well.

I tend to be super "wordy" (sorry) and yet I wish someone had told me so much of this when I first became so ill. After a bit, I did attach myself to one person and she became my mentor...she has SM, and has had it for 18 years.........so she is an unbelievable fountain of information!!

Oh.........if your allergist is willing, have him do the test for carcinoid, pheo, and a tryptase level (you need a baseline) and also ask for a PGD2 if willing or an N-methyhistamine test. Some clinics or hospitals have no idea how to collect these samples but your doc can surely find out (and if he can't, many of us on here can give you a name of someone who he can ask) OK?

And you are right........the so called panic attack you had was most likely as mast cell degranulation......Anxiety/the feeling of panic comes from the mediator release! Epi (adrenaline) is one of the mediators that is released....pretty hard to stay calm with that one, right??? :)

You take care.......keep us posted as to how you are doing. I will be praying that the meds you try will not set off a reaction and will help you start to feel better!! Sending "better days ahead" hugs your way! :)

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Medicalmess,

Thank you so much again for your prompt reply. Believe me I know what brain fog is like so I completely understand :) so yesterday I tried to take some benadryl. I had the liquid clear gels so I squeezed only a couple of drops into some water (not even half the pill!) And WHOA I had such a terrible reaction I thought I was dying! I couldn't speak or open my eyes. It was absolutely horrific. I also ate nothing yesterday. I guess I'm one ofthe lucky ones who can't handle the "go-to" benedryl :(. I got a few hours of sleep and I feel a bit better today but still flat on my back. Just slowly sipping water, full body pain, hot face, upset stomach, the works. My mom was going to bring me to the ER last night but we stuck it out at home because we were terrified that they would give me something that would make me worse or possibly kill me. I don't have the set diagnosis yet so it would be difficult to tell the hospital, which I'm sure is totally clueless, that I have an illness I haven't been diagnosed with yet. So I'm just going to have to stick it out until next week when I see the allergist.

I am not going to take any more meds until I see the doctor. Even then I am so afraid of adverse reactions, as I know I am going to have to go through more hell to figure out the right combo. Gosh I don't think there is a worse disease on earth to tell you the truth :( and I think you are completely right- I never had true CFS this is all mast cell. What a nightmare! But I am glad to have figured it out instead of suffering for years and years like many do. Since there is really no food at all that I'm not reacting to I plan to just eat 2 mouthfuls at a time of rice every couple hours to keep me going. Even water brings pain at the moment :( worst part is my reactions are completely systemic; I wish I had the skin type instead I could live with that!

Its reassuring to read your posts, as I feel like I'm dying most days but I keep the faith that it will get better. Im not feeling well at all today but I will write more later. Thank you again for all your help :)

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Hi Faith,

I remember when I was just where you are at... I was waiting for an appointment and had no diagnosis. I did have to go to the ER.....what they did do was give me fluids, which helps (if that happens, make sure the IV fluids are ROOM temperature or it could set off yet another reaction if they are too cold!)

The other thing they did for me was give me IV Ativan which "settled" things down. If you are not comfortable with that, then at least take in the "print off pamphlet" from the Mastocytosis Society Website, that tells the docs what mast cell disease presents like and what they should do. I hope then they would most likely give you IV steroids. You can refuse anything you are not comfortable with! Sometimes when we get so reactive (like you are now) we do need to be on a regiment of steroids because it is the only thing that will get things under control. Most mast cells specialists use them as a last resort, but you are in a "not so good place".....they gave me IV steroids and then sent me home with a weeks oral supply. Then my doctor extended that because I still was having trouble eating. The "catch" with this is, if you have any dairy intolerances most predizone tablets have lactose monohydrate in them. Most mast cell patients do fine with that filler, but I don't. (Again, you could try a little bit and see what happens). And about 99.9% do fine with benedryl and I don't! I am so glad you broke open the capsule and tried just a little bit!!! If you do end up going in, tell them NO BENEDRYL. You can have a "controlled challenge at a hospital or well equipped clinic at a later time). I refused the benedryl and boy am I glad I did....the doctor wasn't happy, but I knew I had reacted a long time ago to it. But at the time I didn't know I couldn't tolerate it at all!! I was on steroids for 4 months to get things calmed down. That included "tapering" which is the only way to get off of them to keep your body balanced.

Watch very carefully that you aren't dehydrated. Pinch your skin and if it doesn't go back to it's original form (if it stays pinched up), you are dehydrated...another easy way to determine if you are dehydrated is to look at your tongue...if it is white, you need to go in and get fluids!! OK? Tell them to start them REALLY REALLY SLOW and again, remind them the IV can't be cold!!! Make sure they keep you comfortable as well (blankets..etc) ......so you don't get cold or too warm if that is more of a problem for you.

Yes, this is a difficult disorder. But I am a breast cancer survivor....8 awful rounds of dose dense chemo....in some ways it was easier. At least then you have a team of doctors helping you....this is sooo hard because we are sooo sick and we still have to help ourselves.

I am glad to hear your mom is there......don't stay by yourself. I carry a cell phone on me 24/7. Don't be afraid to call 911 if you feel you need to. I used to hestitate....I don't anymore. My life is not worth it.

I will say, "my specialist always says, MCAS will not shorten your life....but you may wish it would!" I will say however, a year from now you will look back and say....wow, "look how far I have come and what I have learned" Hang in there!!

Please take care......let me know how you are when you feel up to it. Sending hugs to you....

p.s. I took the regular predizone for a long time before I started to react to it. Now I have it compounded by a local pharmacy and I keep it as an "emergency" med along with my epi pens, extra Pepcid and Xanax.

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Faith,

B/c some of your symptoms could be related to and overlap other medical issues, I suggest you look into carcinoid and follow through with your thyroid issues.

I have papillary thyroid cancer. My thyroid blood work was always "normal" yet I exhibited signs of thyroid disease that was actually cancer. The best way to check this is by obtaining a neck ultrasound. If nodules are found then they will aspirate biopsy them. A U/S is better than a CT scan b/c U/S doesn't give radiation. If they can't determine if the nodules are cancerous then they will do a thyroid whole body scan.

Also, I was diagnosed with a NET - neuroendocrine carcinoid which is also a form of cancer. Some symptoms you show are relevent to carcinoid and NETs.

Aside from asking me, you can learn more by going on www.carcinoid.org site and www.thyca.org site.

Angel

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Hi there, Faith110! : ) I, too, have MCAS and went through quite the ordeal before realizing exactly what the problem was. Thankfully I can take Benadryl which has been a lifesaver. I am not AT ALL suggesting you try any of it at this point {that would not be wise}, but I did want to mention that I can only tolerate 2 forms of Benadryl. . . Equate children's fast melts and IV. No dye-free liquid {I get extremely frustrated for no reason -- probably affecting mast cells in brain}, no liqui-gels {they don't work -- probably causing as much problems as helping}, no IM {I was in AWFUL shape after that!!!}, and surprise, surprise, no pure diphenhydramine salts {WHAT?!? -- I was shocked at that one. Especially when one sister improved significantly with a one time dose of 50mg and another sister had drastic improvement after only a one time dose of 12.5mg. But I was taking 50mg pure 3x's daily - stronger than IV - in addition to my other meds and I was just getting worse and worse}. As for an H1, I take Zyrtec. I am on a rather high dose. . . actually higher than most. . . but I take 50mg a day {20mg AM, 10mg mid, 20mg PM} down from 60mg. I and my specialist are concerned that I might be on too many H1's and that it's affecting other cells in my body. There are many, many different cells in the body that have H1 receptors. The starting dose is usually 10mg 2x's daily {same for Claritin as well}. I take Zantac as my H2 150mg 3x's daily {starting dose usually no more than 2x's daily}. I know. . . I'm a renegade from the preferred Claritin/Pepcid, but I can't tolerate either of those. In fact, the last time they gave me IV Pepcid {Famotidine} in the ER, I had a moderate/severe reaction, and I tried hard to get Claritin to work without success. I react to benzos, so I won't be taking your advice on those! LOL! I, too, am blessed to have quick reactions so I usually know what the problem is, but there are times when I have no clue what has triggered my flare. I hate those times because they tend to be worse than the known triggers.

A couple things you may want to be aware of and perhaps eliminate if at all possible. . . fragrances -- any and all, coffee, herbs, and spices -- even the aroma of it, chemicals -- fumes are even a trigger for me, petroleum, dyes, cigarette smoke. I usually don't suggest such a major overhaul all at once, but with the severity of what you are experiencing. . . It may be one thing overloading your system causing your mast cells to lash out when they may not otherwise. Not that we can ever predict that. : ) I have to be careful of what clothes I wear. 99.9% of all clothes with dark dies are a trigger for me. My abdomen swells etc. so I've revamped my wardrobe. Yesterday I wore a long sleeved white shirt that I haven't worn in a while and didn't think anything of it. I felt TERRIBLE, but didn't think of it being my shirt. I'm having fluid retention anyway, but I got lots of pressure in my head and behind my ears, felt like my BP was dropping even though it wasn't {think it may have been glucose}, getting rather emotional which is not my personality, abdominal swelling, etc. I took meds to no avail. The thought of my shirt hit me, so I went and changed. Within 5 min. I was feeling MUCH better although not 100% {as if I ever do : )}. ***If you find you have a hard time avoiding the fragrances, I {and many like me} have found that wearing a mask helps although it doesn't completely safeguard me from having a reaction. The fragrance has a way of seeping in the pores, I guess. The best mask is a P95 with the little breather flap. That way is keeps out the brunt of offenders all the while not suffocating. : ) I do believe suffocation could easily become a mast cell degranulator. ; )

I also react to even the fumes of isopropyl alcohol, so they always have to use soap and water instead of hand sanitizer and betadine instead of alcohol wipes. Oh, and may I say that even though it goes against most of our natures {esp. Southern hospitality}, BE ADAMANT when it comes to keeping your environment safe. I'm still learning this one. : ) I feel so bad always telling the doctors and nurses {respectfully but firmly} what they can and can't do, although I can say that most of mine now are very sweet and very willing to do whatever it takes in their power to avoid a flare. It is almost comical when I've already told them no hand sanitizer FUMES and they mindlessly pump some out of habit and lack of understanding. {Never fails, they think I mean only that it can't touch me although I always stress the part about the FUMES.} When they pump it, I almost frantically tell them again and they just stand there staring at me like "and what do you expect me to now?" all the while I begin flushing and my ab starts swelling, etc. Almost without fail, I have to ask them if they can wash it off. Another real kicker is when they say they have betadine and they break open the Chlora-prep which is 70% ALCOHOL!!! I've started carrying my own betadine wipes with me wherever I go and very readily offer to share with anyone getting needles and tubes ready. : )

I totally agree with medicalmess in her suggestion to go get IV fluids. Last Nov., I had what my specialist termed a "wicked flare", and I found that even when they gave me IV meds, it always worked MUCH better if they followed it with fluids. Right now, I am on 5mg prednisolone 2x's daily. I've had steroids since the end of Nov. although neither I nor my specialist are too crazy about it. But since I have a history of reacting to pretty much all the meds tried, we really have no choice. In Dec. he out me on a 60mg daily infusion until my veins started blowing a week later. Then he ordered 8mg b.i.d. for a month which stretched out to 2 before he started a taper. Even with an EXTREMELY slow taper, it was not successful, so that's why I'm back up to 5mg b.i.d. My unruly mast cells threaten me with revolt every time I try to even suggest they should calm down! : ) I cannot tolerate the pill form, so I had it compounded with just water and Methocel {a suspending agent since the chemical is not water soluble}. Once I can get this flare to calm down, I'll be trying N-Acetyl Cysteine {NAC}.

And speaking of water, it may sound crazy, but I cannot tolerate most waters. Tap water is totally out {even filtered because of what the filter is made of}. I used to drink Deer Park spring water until I acquired a burning I would liken to a campfire in the pit of my stomach and spreading up my esophagus. I began pouring it into a glass to drink it {couldn't touch my lips to plastic}, and that helped for a while, but then it kicked in again. The more it burned, the more I drank, and the more I drank, the more it burned. Sorta like pouring gas on it. I changed waters, and it resolved. I now drink Walmart spring water out of glass. Works for me! : )

I also have to be careful what my food is cooked in, served in, and eaten off of. Nothing but stainless steel and clear glass. Should have seen it in the hospital. I can guarantee you that I am the only patient that has ever had their food served in one of the big stainless steel catering dishes! : ) And for future info, if you are ever admitted into the hospital {which I pray you never have to}, if you have diet limitations and know what you can eat, be specific as to what it is and how it needs to be prepared. The chef from the hospital actually went out shopping for me!

I know I am jumping from one subject to another, but everything I share reminds me of some other detail. : )

medicalmess has done an excellent job {as always} in sharing info, so I don't have much of anything to add except my own experience. : ) With my strange food "allergies", I find that I can tolerate a few specific things for a little while, and then I can feel the "revolution" when I need to change the diet. For example, I could eat a certain kind of chicken breast baked on the bone, a certain brand of a certain kind of wheat noodles {even same brand, same ingredient, but different style didn't work -- okay, that's weird! lol}, and baked sweet potatoes. I was okay with that for a while, but then I started reacting. Now I can't eat that, but I'm fine with one type of bread, one type of one brand of ham, heirloom tomatoes, one type of one brand of cookies, a certain kind of ground beef, etc. My mast cells are picky eaters! : ) Some day, the food wheel will probably turn and I'll be back to baked chicken, but until then. . . Something that improved my health overall {not eliminating the reactions, but reducing them to an extent and giving a better baseline} was to cut out preservatives, dyes, processed sugars, additives, etc. Simple foods are easier for our bodies to process although I'll be the first to tell you that my diet is not what I've always dreamed of as a healthy diet. Sadly. But my mast cells wear the pants in this arena. . . at least for now. : )

This may have already been covered {thanks, brain fog! : )}, but it is very important to only change one thing at a time. Eliminating isn't as big a deal, but when you add things back this concept is extremely important. That way you know what is causing the trouble.

I'm glad you suspected MCAS because you certainly sound like the prime candidate. We all know how hard it is to go through the stages you are going through right now. I'm praying that you'll find something that helps soon!!! My heart really goes out to you because I can only imagine the miserable state you are in. I'm thankful to the Lord that I've found meds that have improved my quality of life to an extent. Not to mention the many prayers that have been offered on my behalf.

This is WAAAAAAAAAY longer than what I intended, but I am a long-winded writer. : ) Sorry bout that!

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P.S. There is certainly nothing wrong with being checked for the cancers {they definitely would need to be ruled out if your symptoms should suggest they would be a possibility}, but I will warn you against any CT dyes. I'm not sure if any of the CT scans needed for that diagnosis would call for contrast, but CT dyes are a mast cell degranulator and should be avoided if at all possible with your suspicion of a mast cell disease. I had a CTA w/ contrast done last Nov., and I had a HUMONGOUS flare {in addition to the "wicked" one I already had} despite pretreatment. After that experience, I have chosen the MRI since, although it takes much longer, the dye is not a known mast cell degranulator, and I've done fine with that. I must say, breathing has kinda become a habit for me. LOL! Granted, people are allergic to the MRI dye. . . it's just not as big of a risk factor.

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Angel,

I was in the hospital just in January and they scanned my whole body from head to pelvis, both with CT scan and MRI. All they found was a small cyst on one of my ovaries. Strangely enough I was able to tolerate the dye at that time, it only raced my heart for about 10 minutes. But thank you for the insight, I will definitely look into those tests too :)

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Medicalmess,

You've been a total God send :) I did the skin test and I am not dehydrated so I'm going to continue to drink water. I've been doing the rice and although I'm still reacting the reactions are calming down a bit. I find that if I listen to soothing music and meditate directly after eating I can get through it with somewhat more ease. Stress is probably my number one trigger! I have always been more into alternative healing and very spiritual so the idea of taking all these medications really doesn't sit well with me :( But I will do it if I absolutely have to. Last time when I went through something similar to this last year, with what I thought was an "adrenal crash" but now I know it was definitely a flare up, I took ascorbic acid (pure vitamin C with nothing added) and it seemed to really turn me around- for months. I still had some issues of course but I believe it was due to unknowingly and continuously eating foods that I was sensitive to. Then I switched brands to an organic type derived from fruit and started reacting to it a month later. So I stopped the C altogether. My mom just got home with some ascorbic acid so I'm going to try a teeny bit tomorrow. Sleeping has been helping me a great deal too. Seems my mast cells get angry when I'm tired. BTW, who is your specialist??

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Hi Dixie,

I tried a drop of benadryl last night and whooaaa never again! But now that I think of it it was actually the generic walgreens brand of dye free liquid caps. At this point I am so reactive that I am not willing to experiment again until I get to the doc next week.

I also have a friend who is going through benzo withdrawals right now and living in pure hell, so that is not something I want to throw into my regime. As I said to Medicalmess I am really into alternative health and would like to take as little pharmascueticals as possible. I will take whats necessary but I would much rather do the work of sleuthing and find the triggers. Even though I know this is a huge and stressful endeavor.

I seem to be ok with smells, except for heavy cleaning products and perfumes.Also loud music and bright lights. The heat will do it too. My issues happen the worst when I eat. But it is pollen season right now and I think that may also have something to do with the mast cells being so pissed.

I'm getting overwhelmed by your list of triggers! Right now I feel like everything triggers me so its hard to tell what is what. What I can tell you is that I've been on a pure organic low histamine diet for a long time, but I will have to pay attention and rotate items/brands. That's of course when I can actually eat comfortably again :) But thank you so much for your suggestions. I will definitely keep all that stuff in mind when I get myself somewhat stable again and can start to pick out triggers. RE the water, that's a good point I will try putting it in a glass and see if that helps any. I did notice that I react to certain types of mineral water too. Interesting point. But I am trying not to get too obsessive, as that will create much more stress and I believe that stress really is my biggest trigger.

I fear that I will just be miserable for the rest of my life with this thing :( But I will continue to stay positive and have faith like my screen name!) Who is your specialist? I am going to see an allergist/immunologist here in Florida who supposedly knows about mast cell disorders but he is not on any of the masto websites. I want to get a list going of specialists who can help out from a distance if need be.

Thank you so much for your support. I am so thankful to have finally found people who have a clue to whats going on. I am going through hell right now but its comforting to know that I will eventually come out of it and lead a somewhat "normal" life. At least a life that I can actually eat LOL. I truly appreciate all the positivity I've found here!

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Sorry to have overwhelmed you!!! I really didn't mean to. I just named off a few of the triggers we have found to be very common among us MCAS patients. Such a life becomes the norm, and it surprises me when people about flip because we do things so differently. : ) And because we have tried to eliminate many of the triggers from our home, I quite often forget to be on my guard while in public. Such is life! : ) And, BTW. . . it's a pretty good one! I know. It's NOT what I would have ever chosen had I been handed the steering wheel, but I surrendered my life over to the Lord long ago, and though it hasn't been a smooth ride by any stretch of the imagination, He has been faithful to never give me more than His grace could bear. : )

There is absolutely nothing wrong with alternative health as that is my preference as well. But even though I changed my lifestyle {it was a lifestyle change to me. . . not a diet} and became very conscious of what I put into my mouth, I could not tolerate the supplements {I took whole food supplements}. I can't even tolerate any type of fresh raw veggies. sniff, sniff! The epitome of a healthy diet!!! My mast cells revolt. Anyway. . . Quercitin {a natural supplement} is a known mast cell stabilizer. The water soluble type works the best. The body only absorbs I believe it is only 4% of the non water soluble. Also, the trial I'm waiting to try, N-Acetyl Cysteine, is also a natural supplement. I have the pure powder, but it is also available in capsules. My specialist suggested I try it, but he's only had success with it in one patient and that being just recently. Also, there is a website -- www.algonot.com -- where there are different dietary supplements made up primarily of flavonoids for different systems. Of course, you will want to discuss any and all treatment plans and options with your doctors. I don't want to mislead you in any way.

And, yes, stress is #1 on the triggers list. The worst part is, it's one of the hardest to avoid! : ) I'm afraid I may have created more than relieving. So sorry!

I'm not exactly sure what the forum rules are for sharing specialist info, etc. on open thread. Hmmmm. . . maybe I'll just share a lecture given by an extremely good specialist and top researcher in the field of mast cells. ; ) http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20without%20slide s.pdf I shared this on another thread, but it is so good and gives tons of insight on how different each person is as well as how extreme the symptoms of MCAS can be.

I'm going to send a friend request over if that is okay. That's the only way I can message you privately and give a little more info than I feel comfortable doing on open forum.

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Here is the correct url for that pdf file on Mastocytosis:

http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20without%20slide s.pdf

Thanks for all of your helpful discussions and comments. I don't feel like such a weirdo with these strange symptoms after reading all of this input.

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Ooooops! Sorry! The last part of the link didn't highlight as one. Oh, well. . . : ) Thanks for correcting that, Spacey! I'd have never caught that. : )

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Well this actually her mom. I was told that chilling while eating is very serious. I do it and we captured an episode of atriel fibrilation
What this signifies is that you are close to circulatory collapse from an anaphylaxic reaction to food.. If your Dr has any questions, I will be glad to send him a copy of my strip.He is going to need a shrink if you from die from anaphylaxsis. When you ran that course with chicken, your body developed defenses,or antibodies to protein which is another disease, or at least they say. Get a hot water bottle to keep your core warm, put it on your back ,not too warm. I am not a medical person but from all I know they need to test you for thyroid cancer, MENE 1 or 2 or hashimotos. The thyroid needs to go. Left untreated hashimotos can cause swelling hives,angioedema and anaphylapsis cause the B and T cells go rogue. Next time you start having a reaction tap the bottoms of your feet wth a wet cool cloth until the reactions stop.iF they show no signs of easing a minute or two call 911. It stimulates your bodies own andrenaline gently. I have packed my hands and feet in ice for huge attacks but do not recomended it.

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Hey Dixie,

Don't worry I've already been overwhelmed enough over the past two years! Actually this morning I woke up and felt like I was suffocating, racing heart etc. Then I went out into the living room and it calmed down. Something in my bedroom...the mattress? The pillowcase? The sheets? Ahhhh!!
I'm tolerating the rice a bit better, still feeling like a wound up time bomb but trying my best to relax. Asking God to guide me through this for sure. I'm also trying to not read the panicky posts of others telling me I'm going to die. That doesn't help either!

Thank you for sharing the link with me, it was very informative and shed some light on many of my concerns. I know its going to be a bit of a merry go round to find the right combo of meds that work for me, but I am praying that there won't be too much suffering!

After talking this over with my mom we've decided not to screw around and go right to the source. I will be making an appointment with your specialist tomorrow and a road trip will soon follow. In the meantime I will be asking my GP to prescribe me an epi pen just to have in case of emergency. I am relieved to finally be getting some real treatment and I hope I have finally found the right doctor. I read some posts of others who are working with him and they all say he's fantastic. I hope I get the same results!

Today my sense of smell seems extermely heightened. One whiff of my moms perfume and the top of my head started tingling!
Oh by the way, how do you wash your hair? Can you wear any makeup at all? I'm hoping I'm not being condemned to a life of looking like a total rag Lol

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Hmmmm. . . sounds like you have some weeding out to do in that bedroom of yours. : ) If it were me, I'd just try eliminating one thing at a time. Or better yet, get the sheets {or blanket or pillow, etc. one at a time until you find the culprit} and hold them for a little while in an environment you do fine in {such as the living room this morning}. Do you notice yourself declining {even a little bit} when you go to bed at night? That amount of time should be sufficient to hold something to test whether or not that was the issue. Another question I have is whether you have down pillows or bedding. Or perhaps an afghan. Or do you have sashay? Or mothballs? Do you hang your bedding on the clothesline to dry {just thinking pollen season}? Just a few thoughts. . . Clothes detergent can play a part as well {although I'm assuming that wouldn't be what contributed to the reaction this morning unless you use different detergents for bedding vs. clothes}. "ALL free and clear" does really well for us.

Funny you should ask. : ) We have been searching for fragrance-free, alcohol-free hair products. We have a lot of fragrance intolerance in our family, but the problem is that we all tolerate different fragrances. At the moment, we have 4 or 5 different brands of shampoo and conditioner in our bathroom, and when one takes a shower, others have to avoid them til the fragrance dies down. Just recently I began using Traditional African Black Soap for my hair, and while the first time I used it my hair was just a tad greasy {not noticeable to others}, now it works excellent and I don't even have to use conditioner! Some of my family members didn't get past the first use, so I don't know if it works that way across the board or not. : ) My sister found a company that carries unscented soap bases and sells wholesale. We're seriously considering giving it a try. Here's the link. . .

http://www.bulkapothecary.com/categories/unscented-bases.html

Some other good stuff out there is Jason, Burt's Bees, Kiss My Face. . . Up until I switched to the Black Soap, I used the pomegranate kind of Burt's Bees. They just changed their formula not too long ago, though, so I haven't tried any of the new stuff. My mom did and didn't like it as well as the old stuff.

I've never worn makeup {other than when I was little for a picture or two}, so I don't have an answer for that one. Maybe someone else on the forum could answer that one? There is natural mineral makeup, but I don't know much about it. . . only that it does exist {a lady in my local area makes it}.

I have curly hair, so I am well acquainted with unruly hair. : ) Up until about 5 months ago {my big flare}, I was able to tolerate Marc Anthony mousse for curls, LA Looks clear gel that comes in a green bottle and I think has avocado in it?, and Herbal Essence hairspray. I suffered a little bit, but it didn't cause major problems. I can't use any of those now, and while I certainly don't have the control over my hair that I used to {and would still like to!}, it isn't scary. LOL! Straightening it helps me a lot, but, aside from fatigue, the heat of the straightening iron messes with me some and humidity brings the forecast of "frizzy". : ) Since I've been off the stylers for a while, my hair has been much easier to tame than when I first had to cut them out. I've been on the lookout for scent-free, alcohol-free styling products, so if anyone has experience with any or knows of any, I'd welcome the info! : ) It's especially difficult because I not only have to be able to tolerate it, but my family does as well.

If it makes you feel better, I've met quite a few MCAS patients, and I would never have picked them out of a crowd {as long as that crowd was made up of decent people with good hygiene : )}.

Perfumes/colognes/fragrances are near the top of my list of triggers. We limit fragrances in our home, and I wear a mask when going out into public {i.e. church, doctors offices, and any rare outing}. My first symptoms when I enter an atmosphere of fragrance are flushing, tingling in my head and throughout my body, muscle weakness {usually full body}, and worsening of brain fog. Symptoms vary, but these are usually consistent for me with fragrances.

I'm so glad you've decided to go to him! You will not be disappointed. He is EXCELLENT!!! I'm going to prepare you, though. Start right now listing any and all symptoms, diseases, illnesses, weird stuff that you've ever had or been diagnosed with. . . from birth! Or, as he puts it, "When was the last time you REALLY felt WELL?" Even the things you always thought were normal but really aren't as well as the "little" things other doctors don't pay any attention to as being part of the puzzle. And if you have a question as to whether you should mention it or not, put it down. : ) I was blessed to have sat in on my sister's first appt., so as soon as I got back home, I began writing everything down. I didn't have an appt. at that time, but I knew if there was any possibility I would ever go, I needed to have a list in case of brain fog. As a couple months passed, I wrote things down as I thought of them. I organized it into categories such as "infant", "toddler", "childhood", "teens", etc. with an asterisk beside the symptoms that I continue to experience. I also listed what all symptoms my reactions include on any given day. It was by no means exhaustive, but it did give a good idea. {He does have a mental list of questions and symptoms that he goes through after he is done with the history part, so if you don't cover it, he will.} All of that proved to be extremely helpful and kept the stress of trying to remember everything to a minimum! I now keep that list in my 3-ring medical binder, and, unfortunately, add to it along the way. : )

Sigh. . . I wrote a book again! LOL! One day I will surprise you all with a really short post with nice concise answers that don't go from A-Z all the while answering questions and asking opinions, etc. One day. But until then. . . : )

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