Newbie! Questions Re: Mast Cell Disorders & Seeing Dr. Grubb

[katrina13]

Dear All,

I'm so happy to join this fantastic site-- I can't thank you enough for all the information it provides! And it's priceless to know I'm not alone.

I'm 39, and have had POTS since age 20 (official dx later at Vanderbilt in 2001); Intersitital cystitis dx 2004; hypothyroid dx 2009; depression dx 2011.

I haven't seen a POTS specialist since 2002, but since I live in the Toledo area now, I thought I might see Dr. Grubb. I have my first appt. with him this week. I've done a forum search, but have a couple of questions I'm hoping someone can help me with:

1) I want to ask him about the possibility of a mast cell issue behind the POTS (see below for dissertation length description of why). But while I do get a recurring fever with some attacks of tachycardia/abdominal cramping, and also night sweats, I don't know about flushing-- I do turn red along with anaphylactic response to some foods, but not just on a regular basis. I'm pretty much the palest person on the planet. Is it possible to have a mast cell problem if you don't have flushing?

2) Does Dr. Grubb do any diagnostic testing for mast cell disorders? Or, if he thinks it would be worthwhile, does he refer a patient to a specialist?

3) I'm on florinef, zyrtec, singulair, Prevacid, hydroxyzine, levothyroxine, zoloft, and trazodone. Is there any point in asking about mast cell problems, since I'm already on a lot of the medications used to treat them? They were prescribed for the other issues listed above.

Why I want to ask about mast cell disorders:

Dx since early childhood as allergic to many foods (dairy, egg, most meats/fish/shellfish, wheat & most other grains, peanuts, tree nuts, chocolate, tomatoes, eggplant, fennel...the list goes on). Anaphylactic symptoms in response to those things; didn't grow out of them. My older sister has a ton of severe sensitivities and allergies as well. I also have unexplained symptoms that on paper look like allergies but feel worse, and don't seem to correspond with exposure to anything I'm allergic to (saw an allergist to retest several years ago; he couldn't figure it out)-- but do correspond to stressful events, not sleeping, eating foods that are frozen or very hot (temperature).

Anyway, thank you in advance for reading through my ridiculously long post, and for your help! Sending thoughts to all of you for a feeling-good day!

[corina]

Hi Katrina, welcome to the forum!

[Katybug]

It does sound like looking into mast cell might be worth it. I have severe classical allergies but also have mast cell activation syndrome. You are on a lot of the common treatments but you may need dosage adjustments or to play around with different combos. And there are some other meds that you aren't on that are possible treatments. Good luck.

[Darlene]

i see grubb for dyautonomia. no, he doesnt do any testing for mcad... nor does he refer you to a mast cell specialist. he does suspect i have mast cell instability and put me on chromolyn. i asked him if he could write me out a script for ketotifen, being i see quite of people talking about this med. i told him it is not made in the US, but people are getting it. he did write me out a script for it, but i have not yet gotten in filled. people say you can get it from clarks pharmacy.

he also said i should try gluten free for 30 days to see what happens.

gurbb is very nice, but don't think he know a lot about mcas. he has seemed pretty distracted the past few times i have seen him.

[katrina13]

Thank you for your welcome and replies!

[Anoj]

Your medical history sounds almost exactly like mine. POTS, IC, hashi's ... Wow! Keep us posted!

[Kellysavedbygrace]

Welcome to the forum! Glad you are here. And, living in Toledo is a great place if you have Dysautonomia bc you are close to many major medical centers who have expertise in this.

Unfortunately, for the most part, there is a disconnect between the study of Systemic Mast Cell Disease and Dysautonomia. Many experienced Dysautonomia docs are familiar w MCAD but really aren't assessing it, and treating it the way a hematologist or immunologist who is studying MCAD would.

The good news is Dr. Grubb has recognized the link between some subsets of POTS pts and MCA. He suspects less than 10% of patients have this and from my last review of his position on this he, like many of the other major medical center docs, look for flushing before running either a urinary Methylhistamine test or a serum tryptase test following a flushing episode. Unfortunately these are only a few tests that can confirm MCAD.

On the other hand, Dr. Afrin, who sits on the Mastocytosis Medical Advisory board has a 4 part diagnostic criteria that includes many lab tests well beyond the urinary methyl histamine. (see the 2013 DINET winter newsletter- an article he helped me write on this topic). Interestingly, he suspects a sizable number of Dysautonomia patients also have MCAD. He and his colleagues on the Mastocytosis Society medical board are currently working on better diagnostic criteria. In the meantime, most Dysautonomia docs are still looking for cutaneous flushing episodes and using labs that may not give enough evidence to rule out MCAD.

Yes. You can have MCAD without flushing episodes. I've had a handful of flushing episodes but by reducing my niacin intake I've been able to limit the cutaneous flushing experiences. Now I get flushing episodes that are more "internal". Like a chemical burn of my blood and bones- it's horrible but it does not present like the flushing episodes we commonly hear about.

The article does a better job of explaining it but essentially the mast cell has an unknown number of chemical mediators that can cause havoc in our bodies. The biggest clue that you might want to get tested for Mast Cell Activation Disease is the presence of symptoms in most or all organ systems. Feel free to PM me. Also, you might consider printing that article and taking it to Dr. Grubb. It might help him to eventually conne t with Dr. Afrin, or others, to begin a dialogue about how Dysautonomia may or may not be connected.

[katrina13]

Thank you, Anoj and Kelly! Dr. Grubb dx'd Joint Hypermobility Syndrome. He said he is sure there is a link between JHS and mast cell issues for some people, but he seemed unconvinced from my lack of flushing. I guess I do flush with alcohol or medications sometimes, and with peanuts/anaphylactic response, but he said that POTS patients with mast cell issues usually are fine in between episodes. I'm symptomatic all the time. He did say it might be worth looking into anyway, though, so I've made an appt. with Dr. Bernstein in Cincinnati. I'm not sure how that will go, but fingers crossed.

I will go read your article now, Kelly! Thank you for writing it! I think I will bring it with me. I might PM you, too; thanks so much.

Hope you're all feeling well today.

[Suthrngal]

What are the typical treatments for mcas?

[Chaos]

What are the typical treatments for mcas?

Suthrngal- a lot of people on here have tried over the counter meds using a combo of H1 blockers like claritin, allegra or zyrtec and H2 blockers like pepcid or zantac as a trial to see if they get any kind of symptom relief. However, a lot of people need much higher doses or different drugs or a type of "cocktail" of drugs that doctors prescribe to help with their symptoms. There is a lot more finesse to treating it than just these 2 types of drugs, but as a "quick and dirty" trial to see if it helps your MCAS type symptoms, it sometimes works for some people.

[Suthrngal]

Thanks so much. Are the main prescriptions for this gastro crom and atarax?

[Loulou]

I'm being tested for mcad this week. I have flushing mainly on my chest and face.

And have other symptoms too. But the one I'm unsure able is the dark spots on my arms legs and back.

I don't know if it is liver spots or mcad.

Do you guys have them and can you feel them when you touch them? As well did any of you have biopsies?

[DoozlyGirl]

Katrina,

i have been diagnosed with MCAS by Dr Afrin. There are over 100 different known mast cell mediators, likely up to 200 (per Dr Afrin), and the various symptoms are likely related (at least in part) to the various mediators that are released during mast cell degranulation. I have very pale skin and flush all the time, have frequent headaches, and have plummeting BP as my primary reactions and a few times a month have vomitting, or big "D". Many MCAS folks consider themselves to be a leaker, shocker or both. This describes how the mediators are released: slowly a bit at a time or explosively all at once. I do both. And my symptoms point to histamine, and prostaglandins, but my positve testing showed TNF, heparin, NSE.

Flushing is NOT required for MCAS. Some itch, some have hives, welts or a rash, or have swelling or angioedema and don't flush at all. Any skin related symtoms AND symptoms from a second organ system (plummeting BP, GI cramping/vomiting, "D", throat tightness, breathing issues, etc) consitutes anaphylaxis, and points to mast cell activation.

There is some suspicioun that JHS is actually a form of EDS, which has been implicated in MCAS, as mast cells are located in connective tissue.

If you are consistently having symptoms, it could mean you are in what has been described (by one of our own members) as low grade anaphylaxis all the time. That is what happened to me. I had to eliminate any possible triggers in order to lower my bucket enough to see that my symptoms finally had a beginning and an end. Eventually I went from 'leaking' all the time with worsening crises to having periods of no reactions,with minimal reactions and moderate shocking, and with occasional major shocking. Synthetic chemicals (FD&C dyes, perfumes/scents, artificial sweetners. MSG, preservatives, sulfites, parabens, benzoates, alcohol, etc) are my worst triggers. It is possbile your foods, environment and your meds could be filling up your bucket. Just something to think about....

Best wishes in connecting your dots,

Lyn

[katrina13]

Doozlygirl, thank you so much for sharing your experience. I probably ought to see a specialist like Dr. Afrin, but I'm sure it will take me a while to work up the nerve/$! I've always thought there must be some connection between all my "dots."

[Lethargic Smiles]

For those of you who underwent testing for Mast Cell Activation, did you need to quit taking any anti-histamines prior to the testing? I know they have you do this for allergy testing. It makes sense they would if anti-histamines are something that can help with Mast Cell Activation, they'd have you stop taking it to get the most accurate picture of what is going on. A quick Google search did show studies where anti-histamines effectively lowered serum tryptase levels. I was just wondering how long to expect going off of them (I take Nyquil at night and Singulair during the day) to complete the testing.