For Those Interested - I Saw Dr. Afrin And Have A Possible Mcas Diagnosis

[DoozlyGirl]

I'd like to add that if someone has episodes with mutiple symptoms (simultaneous or escalating symptoms) that includes flushing, hives, itching, GI issues such as "D" or vomiting, and low BP, then this satisfies the definition of anaphylaxis. Anaphylaxis = skin symptoms and one other organ, such as vomiting and/or breathing issues and/or low BP.

Other symptoms such as night sweats/hot flashes, swelling, congnitive difficulties/brain fog, easy bruising, sensitivity to smells, meds, foods etc, pain that moves around the body, GERD, and dozens of other symtoms have been attributed to mast cell mediator release.

As you can see, these symtoms fall outside of the classic POTS or other dysautonomia disorders definitions. I've been flushing and having anaphylaxis far longer than I've had orthostatic hypotension. I have "failed" conventional treatment protocols for orthostatic hypotention, and I have tried just about everything published.

I am thankful that this site, because that 's how I learned about mast cell disorders. Patients who have pursued a mast cell disorder had PM'd me to nudge me in this direction.

Congratulations futurehope on connecting some dots. I hope to connect some dots when I see Dr Afrin in 2 weeks.

Lyn

[issie]

perhaps i was harsh with the diagnosing over the internet comment.

However my advice is to proceed with informed scepticism.

we have to be open minded enough to consider the possiblities

This is exactly my point. Half the statements I hear frequently on this site are assumptions.

Rama, you have all the study knowledge and can usually point someone to a study - but, we are here to explore not only those studies but also other possibilities. You apologize for being harsh and in the same breath put down people who want to be open minded and look for things that maybe doctors haven't thought of. It takes one persons ideas to start research. If people didn't have ideas - there would be no further research into different areas and what is now known today - with science - would have never been discovered. Yesterday's idea is todays considered fact. Those things considered fact today could change tomorrow - because science and medicine continues to advance. (No one, not even scientist with their vast knowledge - knows EVERYTHING about the human body and how it works.) I can point out some threads that your on where you've done your own "assuming" or ponderings - maybe a little out of the box thinking. Thank goodness, intelligent people are brave enough to explore other possibilities. I don't think medicine would be to the point that it is - if that had not happened.

Issie

[futurehope]

Hey, Futurehope,

I didn't mean to take over your post. I'm sorry. Please keep us updated on what you find out. So many of us here have mast cell disease suspicions and could really benefit from what you find out.

Again, sorry.

Lindajoy

I really want to help people if I can. You all helped me throughout the years. No apology is needed.

[futurehope]

I'd like to add that if someone has episodes with mutiple symptoms (simultaneous or escalating symptoms) that includes flushing, hives, itching, GI issues such as "D" or vomiting, and low BP, then this satisfies the definition of anaphylaxis. Anaphylaxis = skin symptoms and one other organ, such as vomiting and/or breathing issues and/or low BP.

Other symptoms such as night sweats/hot flashes, swelling, congnitive difficulties/brain fog, easy bruising, sensitivity to smells, meds, foods etc, pain that moves around the body, GERD, and dozens of other symtoms have been attributed to mast cell mediator release.

As you can see, these symtoms fall outside of the classic POTS or other dysautonomia disorders definitions. I've been flushing and having anaphylaxis far longer than I've had orthostatic hypotension. I have "failed" conventional treatment protocols for orthostatic hypotention, and I have tried just about everything published.

I am thankful that this site, because that 's how I learned about mast cell disorders. Patients who have pursued a mast cell disorder had PM'd me to nudge me in this direction.

Congratulations futurehope on connecting some dots. I hope to connect some dots when I see Dr Afrin in 2 weeks.

Lyn

You've done a good service by typing up this post. Thank you much, and I hope someone benefits from your sharing.

[LindaJoy]

I am with you, Futurehope. I have been extremely ill for seven long years, as you all know here. I thank God all the time for this site, and for the suggestions that everyone has brought to me in order to try and help me get better. Just talking with all of you has opened my eyes to many conditions that I could have had and led me to be tested to rule them out. That's all we're trying to do here, is get better ourselves while helping others, as well.

If it wasn't for the support groups I've joined over the years and nudgings from the people on them, I would not have been diagnosed with my sphincter of oddi dysfunction and gotten help for it. I would not know a thing about POTS! And, even though mast cell disease has been ruled out for me by several top mast cell doctors, I still get, from everyone on every support site I'm on, that I fit the mast cell profile to a tee (I really do), even to those with mast cell disease themselves. Thus, I'm not ruling it out as my diagnosis. I'm pursuing additional testing. Thanks to all of you.

By the way, I contacted Dr. Afrin yesterday. He wrote me right back last evening! I gave him my symptom story along with labs. He was not ruling out mast cell in me at all, based on all I said. He said he would be glad to see me in his office (what has been the wait time to see him for all of you? He said it might be awhile), or he would gladly aid my own pcp in doing the testing, then help with treatment suggestions. Wow. You don't get that with just anyone! He said he was hesitant to have these tests done anywhere else as they may not get handled correctly, so what do you all think? Should I try my pcp here or set out to see Dr. Afrin?

Stay strong, everyone. And, again, I'm glad you all are here, sharing your thoughts, experiences, knowledge and suggestions. Without all of you, I truly would feel more alone and lost than I do.

Lindajoy

[Christy_D]

Lindajoy,

We opted to see Dr Afrin just to make sure the testing was done correctly and would get a correct diagnosis. He also offered to assist our local doctor without ever having met him(wonderful doctor). Our initial wait was 2 months, we go back in 1.5 weeks for a follow up and then he wants a local doctor to take over with his guidance.

I also wouldn't have pursued or thought of MCAS in my son without someone on here nudging me to look into it. Once I looked further into, somethings started making sense. This forum has been invaluable.

Christy

[futurehope]

LindaJoy,

It did not take that long for me to get a new patient visit, maybe two months? As I have said numerous times, I do not have an MCAS diagnosis, but Dr. Afrin ran many tests. I feel comfortable (I prayed about this beforehand), that I am on the right course for me.

It is truly difficult to be unwell for so many years. I told Dr. Afrin that I had learned at an early age to keep quiet about my problems as no one would find anything wrong with me, and people would tend to think I was a hypochondriac.

It is not my place, or anyone else's place, on this forum to tell you what to do, whether you should see Dr. Afrin or not. It takes effort, time, money, patience, things only you know about. I do not feel comfortable telling people what to do with their time and money.

It is up to you. It took me a while, about 8 years, to really pursue this as I had myself convinced that I did not fit the description of a person with a mast cell disorder. I may find out I do not have it, but I will not be sorry for having myself evaluated by an expert. And that is the key. I will not be sorry for the time/money I put out for this visit.

God's blessings to you.

[Maiysa]

Lindajoy,

I wanted to add that I'm just now in the middle of the Mast Cell diagnosis. You are all so lucky to have access to Dr. Afrin. I wish I was so lucky. I mentioned that a doctor here said don't worry about it even though my numbers are even past the abnormal level on a blood test. Anyhow, since it's taking me about 5 months for an appointment locally here, I have been reading about anti histamine diet. And wow, it's amazing what going off of those foods and taking a just a bit of claritin has done. At least for the flushing and orthorstatic intolerance. I was juicing in between meals and drinking over 2 cups of spinach a day. I love spinach. I found out it's the biggest histamine contributor. It was hard to go off the spinach. But I found other veges, but you should read the anti histamine diet that is on the internet. IT's the urticaria site that has a nice list. I can post that for you if you can't find it. But it has really helped. I didn't think it did at first, but it took several weeks to get it out of my system. Let me know if you have any questions. Boy you sparked quite a debate. haha. But it's all good for us to hear each other. So nice to be able to have a place to go to do that.

Maiysa

[issie]

Maiysa,

I'd like to see the list you're talking about. I've seen a couple - some better than others. Would you mind posting it? Thanks!

Issie

[Maiysa]

http://www.chronichives.com/pages/lowhistamine.htm

This is the list Issie that the mast cell forum uses. This diet is actually for the type with the skin mast cell issue. I don't agree completely with the list, especially since it allows grains and milk. I was reading on several medical journals that they are finding a huge mass cell releases in anything wheat. So not sure why they would allow this on this diet. I will post that article too. Very interesting. Also, I'm surprised milk is on there since I have heard it's also a histamine releaser. Also, I read further into the egg thing and it's actually raw eggs that release histamine or over easy. So scrambled is okay. But everyone is different. I noticed it said to avoid cherries. Cherries actually make me feel better, maybe because they are full of anti inflammatory properties. But anyhow it's a good start.

And here is another helpful list. It's from a gluten site and a rosacea site. But basically it's the same thing. I also found out that foods you are allergic to is something a little bit different. These are just foods that cause a histamine release, which I would think could also be an issue for general allergy suffers. Just going off of my experience with food allergies as well, since a few of mine are on here as well. Hope this helps.

http://www.reverta.com/blog/histamine/top-10-histamine-containing-foods/

[corina]

I have a question for those of you experienced in mast cell issues (have to admit I had never heard of it and wouldnt even know how it's called in my own language )

My youngest son has had some fainting issues over the past years, allergies (that he's been treated for) and asthma. What I remember was quite striking is when he was a baby and we started him on solid food he got red all over his body for some minutes with everything new we gave him. He got the jars with prepared food that only need heating. Do you think that could be a mast cell reaction? He didn't get any other (allergic) reaction other than the red color. At that time I didn't have a clue and did mention it but nobody ever thought much of it. So far he's doing okay though I think he's much more fatigued than his peers are.

[LindaJoy]

Hi, Corina. I can speak to the red issue as a child. When I was around 3 or 4, I started to turn beet red, usually all over my body, after eating. Sometimes, I would get hives with this, sometimes I would vomit or have an asthma attack, but I remember always turning red. I got worse and worse until I had to be hospitalized when I was five years old, twice, for what docs thought was pneumonia. The doctors found that I had asthma brought on by severe food allergies. It was the food allergies that was causing me to turn red, too. Flushing, they call it, and it can be all over the body, not just on the face. I was tested and found to be allergic to eggs and all poultry. Milk was not a good idea for me at the time, nor was chocolate, so I had to stay away from them too, for awhile. I was treated for my allergies with shots (I had environmental as well), stayed away from the foods I was allergic to, and took antihistamines every day.

So, you're asking if the redness is allergy related? I would say, given that your son also experiences fainting, allergies and asthma, that yes, more than likely he was having some type of histamine reaction. It's strange, though, that it would happen only when you would try new foods on him? Usually, with food allergies and other allergies, you can get by the first time you come into contact with the allergen. Your body hasn't had need to create an antibody against that allergen until exposure. That's a true IgE mediated reaction, when your body has the antibody to the allergen (I hope I'm not insulting what you do know about allergy).

Now, there is another reaction called an anaphylactoid reaction that is not IgE mediated. In other words, your body can react to it the first time you come into contact with the item since an antibody is not necessary in order to have a reaction. Does that make sense? The symptoms of allergy / anaphylaxis and anaphylactoid reactions are identical. That's what's confusing to so many people. "I react to cherries, but I don't show that I'm allergic to them on testing." Well, that's because you aren't IgE mediated allergic to them (that's what allergy testing tests for, IgE mediated allergies), but you can have an intolerance to them that can create an anaphylactoid reaction (what is not tested for). Any way you look at it, you need to avoid that allergen.

So, now that I've thoroughly confused you... Yes, your son could have had an anaphylactoid type reaction even the first time out on eating these foods. Was he able to then tolerate them later? Sometimes we can eat things that we previously couldn't due to the body changing or us building up a tolerance to the food, such as what happens when we're given allergy shots. We're given little bits of what we're allergic to in those shots, in an effort to build up a tolerance. "Hey, if I'm exposed to this all the time, I'll just get used to it and see that it's not a threat to me," says the body in theory of why shots are used in allergy.

I'm sorry to take up so much space, and I hope I haven't insulted what you do know about allergy, like I said above. If you already know a lot of this, I apologize. But, yes, I turned red all over, too, and it was found to be from allergies, esp. noticeable after eating.

I hope your son is doing well now.

Lindajoy

[HopeSprings]

When someone who has seen Dr. Afrin gets a chance to post the blood work he does, could you please? I can't travel to S. Carolina anytime soon. Does he diagnose based on test results? I don't understand MCAS. It sounds like a severe allergy problem? But why would it cause one's heart to race from positional changes? Is standing up triggering a release of these chemicals? I understand the flushing and some other symptoms, but so many don't fit. Also, if it's a histamine release problem, it seems like one's symptoms would be episodic, not constant. I want to look at it a little more closely because I've suddenly been developing hives. It's been happening everyday, several times a day for months and I can't find a trigger. And when this all began one of the worst symptoms was a feeling like the back of my throat was swelling and I couldn't breathe. This calmed down though. Plus I have the alcohol intolerance and severe chemical and medication sensitivity. I think it's worth looking into.

[Darlene]

naomi,

Serum Tryptase

Plasma Histamine - prechilled tube and send on ice

Plasma Prostaglandin D2 - prechilled tube and send on ice

Plasma Heprin Level - prechilled tube and send on ice

Chromogranin A

Urine for Prostaglandin D2 - 24 hr urine - send on ice

Urine for N Methyhistamine - 24 hr urine - send on ice

[futurehope]

Lindajoy,

I wanted to add that I'm just now in the middle of the Mast Cell diagnosis. You are all so lucky to have access to Dr. Afrin. I wish I was so lucky. I mentioned that a doctor here said don't worry about it even though my numbers are even past the abnormal level on a blood test. Anyhow, since it's taking me about 5 months for an appointment locally here, I have been reading about anti histamine diet. And wow, it's amazing what going off of those foods and taking a just a bit of claritin has done. At least for the flushing and orthorstatic intolerance. I was juicing in between meals and drinking over 2 cups of spinach a day. I love spinach. I found out it's the biggest histamine contributor. It was hard to go off the spinach. But I found other veges, but you should read the anti histamine diet that is on the internet. IT's the urticaria site that has a nice list. I can post that for you if you can't find it. But it has really helped. I didn't think it did at first, but it took several weeks to get it out of my system. Let me know if you have any questions. Boy you sparked quite a debate. haha. But it's all good for us to hear each other. So nice to be able to have a place to go to do that.

Maiysa

Yes, if it's good for you, I probably cannot eat it......LOL

The only difficulty I have with the histamine free diet is..

we do need the nourishment and nutrients from different foods, in order that our bodies get everything they need for optimal health. By restricting your diet, especially too much, you may be solving one problem, but you are creating nutritional deficiencies.

[futurehope]

When someone who has seen Dr. Afrin gets a chance to post the blood work he does, could you please? I can't travel to S. Carolina anytime soon. Does he diagnose based on test results? I don't understand MCAS. It sounds like a severe allergy problem? But why would it cause one's heart to race from positional changes? Is standing up triggering a release of these chemicals? I understand the flushing and some other symptoms, but so many don't fit. Also, if it's a histamine release problem, it seems like one's symptoms would be episodic, not constant. I want to look at it a little more closely because I've suddenly been developing hives. It's been happening everyday, several times a day for months and I can't find a trigger. And when this all began one of the worst symptoms was a feeling like the back of my throat was swelling and I couldn't breathe. This calmed down though. Plus I have the alcohol intolerance and severe chemical and medication sensitivity. I think it's worth looking into.

I would be looking into mast cell disorders if I were you. I cannot drink alcohol. Sauerkraut, vinegar and fermented foods are out. Fruits make me my stomach get upset. I am sensitive to chemicals. Plus, of course, there are many other malfunctioning parts of my body. We're each different.

As for how Dr. Afrin diagnosis, I can tell you what I think. He listens intently and asks questions about your entire medical history. He scratches your back and looks to see what that does to you. He tests you. And I'm supposing he also takes into account whether adding H1 and H2 blockers to your daily regimen benefits you. I need several different histamine blockers a day.

[futurehope]

naomi,

Serum Tryptase

Plasma Histamine - prechilled tube and send on ice

Plasma Prostaglandin D2 - prechilled tube and send on ice

Plasma Heprin Level - prechilled tube and send on ice

Chromogranin A

Urine for Prostaglandin D2 - 24 hr urine - send on ice

Urine for N Methyhistamine - 24 hr urine - send on ice

By posting this list I think you inadvertantly gave me an explanation for why I had to wait so long in the waiting room before getting my blood drawn. They were probably chilling the collection tubes. I also noticed them putting some tubes in special envelopes...keeping the samples chilled, maybe?

[HopeSprings]

Thank you Darlene. Now who the heck am I gonna get to do it.... maybe a very open minded allergist?

Did someone say he uses a special lab? If so, do you know which one?

[issie]

This is the list Issie that the mast cell forum uses. This diet is actually for the type with the skin mast cell issue. I don't agree completely with the list, especially since it allows grains and milk. I was reading on several medical journals that they are finding a huge mass cell releases in anything wheat. Also, I'm surprised milk is on there since I have heard it's also a histamine releaser.

Thanks Maiysa,

I do agree with you. Most of the things you read put wheat and most grains as a problem with allergies. The other two biggies are sugar and milk. Those are the main things I've been trying to stay off of. And like you, I have been eating some things that are on the histamine release list. So, will be making some more changes.

Thanks for posting these.

Issie

[DoozlyGirl]

When someone who has seen Dr. Afrin gets a chance to post the blood work he does, could you please? I can't travel to S. Carolina anytime soon. Does he diagnose based on test results? I don't understand MCAS. It sounds like a severe allergy problem? But why would it cause one's heart to race from positional changes? Is standing up triggering a release of these chemicals? I understand the flushing and some other symptoms, but so many don't fit. Also, if it's a histamine release problem, it seems like one's symptoms would be episodic, not constant. I want to look at it a little more closely because I've suddenly been developing hives. It's been happening everyday, several times a day for months and I can't find a trigger. And when this all began one of the worst symptoms was a feeling like the back of my throat was swelling and I couldn't breathe. This calmed down though. Plus I have the alcohol intolerance and severe chemical and medication sensitivity. I think it's worth looking into.

Naomi,

I'd like to share what I've learned, so it may help you. When mast cells are overactive, the slightest assault (pressure, chemicals, cold, heat, alergens, etc) can trigger them to react. The mast cells release histamine and anywhere from a few to literally hundreds of mediators (ie prostaglandins, heparin, cytokines ,etc). While the things that make you allergic can trigger one type of degranulation, ie an allergic IgE response, people with mast cell disorders have other pathways that sets off these mediators and researchers are still learning about these pathways.

If histamine is released into the body, it and other mediators can make the vasculature more pourous. In my case, I leak fluid into my tissues from my veins. And is written as vascular flushing. This is evident from my skin biopsy. I have plasma cells in my skin biopsy sample. I flush terribly everyday and get blotchy red patches on my neck and face. This usually is my first sign the reaction is beginning. If I don't get it under control and my reaction continues, the fluid part of my blood leaks into my tissues, giving me hypotenion due to low blood volume. I used to also get tachycardia at this point whenever I stood. Just as you'd expect in dysautonomia, the tachycardia happens to try to compensate for my low volume in the veins and low BP, as the heart senses something is wrong and tries to get blood back to my head. I am concerned that now with the low BP, I get bradycardia. Possibly a baroreflex dysfunction, but nontheless NOT GOOD.

And yes, laying down can settle down a reaction. Once the BP drops this can signal the second phase of anaphylaxis. If you have two organs of symptoms (skin) at the same time as the low BP, this points to anaphylaxis. As Mack's Mom coined a term, low grade anaphylaxis, theses episodes can become strung together to become constant. It wasn't until I began antihistamines that many of my annoying symptoms faded (bone pain, sinus congestion, dry mouth and eyes (yes you'd think it would be worse with antihistamines), tachycardia, heavy menstrual bleeding, cramps, itching, paresthesias, constipation, GERD, belching, bruising, sympathetic overdrive symptoms, etc.)

This pulled back the layers for me that now my episodes are clearly episodic and while they happen several times a day, They are timed. My mornings suck and I do great in the late evenings. I realized I react every night and face the hangover every morning. Last night I did not react and I felt great from the moment my eyes opened! One more piece of the puzzle for me.

Naomi, In case no one has pointed this out: Hives, swelling of the throat, and breathing issues = anaphylaxis. Period. Your intolerances solidifies that your immune system is overactive for some reason. I encourage you to consider pursuing this angle. Now about finding the triggers, I wish it was easy. Dyes in food, medications, and cosmetics triggers anaphylaxis in me and I can provoke the reactions with food coloring drops. Consider absolutely EVERYTHING. The Mast Cell Disorders Forum can get you started. Really great folks on that forum and lots of advice, tips and knowledge.

With your history of breathing issues, hives and throat tightening, an EPI pen would be wise, since you can never anticipate when it will hapen again. If you can't get to Dr Afrin or Dr Castells, one approach would be to have an allergist/immunologist give you the epi and order the tryptase within an hour or so from the start of a reaction. and give you a standing order for the 24 hour N methylhistamine. Start collecting the urine at the beginning of the reaction. The second approach, which worked for me is to have a skin biopsy by a dermatologist for the flushing/hives. I got an epi pen, tryptase and antihistamines from the dermatolgist. Then the rest fell into place for me.

Good Luck! Let us know how it goes.

Lyn

[Maiysa]

You're welcome Issie. I hope it helps!!

Future Hope sorry you can't do the antihistamine diet. I don't follow it 100% but I do my best. Sample of my daily diet just for today to show no loss of nutrition here. For me if there is a will there is a way. haha. I don't have much of a choice. My mast cells are a little bit higher than most.

Breakfast: Scrambled Eggs and gluten free toast

Coconut Milk or Almond Milk

Lunch: Leaf Lettuce salad with green apples/spoon full of feta (feta cheese is okay according to some)/walnuts/ Grape seed oil with lavender herbs for dressing and a slice of fresh cooked chicken

Snack: I juice kale/apples/pears/carrots and a slice of ginger with alpha lipoic acid and vitamin E and also take my vitamin D tablet at this time. I alternate my veges. But no more spinach.

Dinner; Salmon tacos w/gluten free wraps or corn tortilla's and with my own seasoning/ with vege topping. No cheese though. (Salmon is the only fish that doesn't make me flush and I was sure to take a children's claritin with it just in case)

Went out for frozen yogurt tonight, but I just had the key lime sorbet instead of dairy and it was delicious!!! See no lack of nutrition here. haha. But it is different for everyone with their sensitivities. And I eat all day long. It wasn't much of an adjustment really except for the spinach. I think that was really making me flush.

So that's my sample low histamine diet....except the salmon tacos were really cheating for me, chicken would have been fine.

Good health to all

[corina]

Thanks Linda for explaining!

And thanks everybody else for all the info you're sharing. There's so much to learn!!!

[CharmedLinz]

Great topic and information.

I have a request.........

I can't seem to find Dr. Afrin's email, can someone PM it to me???

Or if one of you talks to him frequently can you ask what his policy is about accepting out of state Colonoscopy Blocks and Slides for testing???

I don't think I can get out there to see him but would gladly send him my samples if he would accept them for testing and tell me how to get them to him.

Thanks!!!

[ramakentesh]

thanks Issie. My main point was about self-diagnosis and about the fact that nearly all the docs who research POTS suggest MCA is not that common in POTS.

[Frugalmama]

That's so interesting, ramakentesh, as the co-founder of our national masto society said that nearly all (or all) of the people she has spoken with who have some form of mast cell disease show POTS as a symptom.