Is it possible to have Mast Cell Activation Disorder and have a serum tryptase within normal limits?

This is reassuring to me. I am better on the protocol meds for MCAD, but my doctor is still trying to decide where I am on the spectrum of the disease. My understanding is that it can turn into mastocytosis at some point. If you don't mind my asking, where is your doctor located? I am interested in finding one who truly understands the disease. Mine is in Nashville.

I am seeing an innumologist at the University of Pennsylvania in Philadelphia, PA. She has other mast cell patients and is familiar with the disease. I feel better taking the H1 and H2 blockers, too. I just hate taking pills every day. Here is the diagnostic criteria for what we have, with requirements for each subclass diagnosis. https://jhoonline.biomedcentral.com/articles/10.1186/1756-8722-4-10

I am seeing my GP this afternoon. I will ask about the MCAD turning into mastocytosis during my appointment.

Hi Gail, I replied to your comment and included a link, so it went to moderation. It sould appear soon.

"The term mast cell activation disease (MCAD) denotes a collection of disorders characterized by (1) accumulation of pathological mast cells in potentially any or all organs and tissues and/or (2) aberrant release of variable subsets of mast cell mediators.

A classification has been proposed which differentiates several types and subclasses of MCAD.

The traditionally recognized subclass termed systemic mastocytosis (SM) includes disorders characterized by certain pathological immunohistochemical and mutational findings which are divided into several subtypes.

On the other hand, mast cell activation syndrome (MCAS) presents a complex clinical picture of multiple mast cell mediator-induced symptoms, failure to meet the WHO criteria for diagnosis of SM, and exclusion of relevant differential diagnoses.

Symptoms observed in patients with MCAS are the same as those seen in patients with SM. Patients present variable and often fluctuating patterns of symptoms which depend on the tissue responses to mast cell mediators released both spontaneously and in response to trigger stimuli."

Thank you for the link (haven't seen it yet) and for the detailed explanation. It is very helpful and encouraging to know there is finally an answer to what I have been dealing with for decades.

You're welcome! The admin of this site hasn't released it yet, but I copied and pasted the info from the link into the comment above yesterday, just in case.

I saw my GP yesterday and spoke to my Immuno on the phone. The both said MCAS/MCAD is a different type of mast cell disease than mastocytosis - a different subclass. They don't "turn into" each other. But if I was worried, we could check my tryptase once a year.

Somehow none of that made me feel any better.

Could you please tell me the name of your immunologist?ty in advance. Karen

Sure. Dr. Fadugba, an immunologist at U Penn. Philadelphia, PA.

Thank you so much.Live in NJ..Husband is in GI and is treating me and before going to Italy and cruise was phenomenal(6months) . Just in case I need additional help. Had tried to research any immunologist in our area and didn't find any. So thank you very much! Hope you are doing well

You're welcome! Hope you are doing ok too - I know travel is a trigger for many of us. Just premedicate and have plenty of meds with you.

Dr. Fadugba has several mast cell patients. She ran a bunch of tests and spent a few hours total, speaking to me. It's helpful if you can give her a history of symptoms - any weird things/symptoms that have happened that you now see could be mast cell related. Also, it helps to describe in detail what happens during your reactions. I typed up the information and brought it to one of my appointments. I had time to think about my past and really did a thorough job. I couldn't have dome that well during my visits. Especially with the darn brain fog.

Good luck <3 Message me if you need anything.

 

It is amazing to have had so many different problems over the years and to finally find an answer. They did bone biopsy to make sure wasn't mastocytosis because I have most all symptoms at one time or another except anaphylaxis. Felt so frustrated and symptoms were coming closer and closer. It was the nasal congestion at the same time as diarrhea, vomiting and severe abdominal pain that was the key. Have history of asthma,migraines,interstitial cystitis, sun allergy, brain fog, severe abdominal issues, svt, tachycardia, raynauds etc etc lol. Sounded crazy I know so they listed me as mixed connective disease because I do have high titers for PBC but not active yet after 10 yrs. Lucky. Anyway, thanks for listening.Good luck. I am so thankful to have a name instead of going to Boston. I have rheumatologist who used to be with Penn but sounds like an immunologist would be what I need. Thanks again k

Does extreme fatigue & no energy go along with systemic mastocytosis?? Last bad (worst) attack I had was 08/28/16 & to this day I am extremely fatigued & have no energy. Cannot get through one day without a 3-4 hour nap & have had to take temporary leave from work because of this.

Yes Brad, those are very common symptoms. Try eating a low histamine diet and taking Zyrtec and Zantac (histamine 1 & 2 blockers), Sodium Cormlyn nasal spray and zatidor eye drops (mast cell stabilizers), vitamin C 1000 units twice a day, magnesium at night.

These are ALL over the counter medications, available online and in generic form. The trick is finding a brand that has ingredients you can tolerate. There is a list of high histamine additives and fillers to avoid.

Emis Moderator comment: I have removed the link as it went to a "Page not found" and users can find the information using a search engine rather than linking to a specific website. If users want the specific link use the Private Message service to exchange.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Mod - it was a direct link to a PDF of a food list - it doesn't return a 404 for me in the US.

Google: " [[pdf]] FoodList histamine, EN, alphabetic, with categories"

and it will be the first search result. This is the BEST chemical/food/preservative/medication list for histamine levels I have found.

I only eat foods that have very low or almost no histamine. I felt better in 2 days, amazing and off most my meds in 3 months.

My 12-year-old daughter has the exact same symptoms that you explained of chronic nasal congestion, diarrhea and severe abdominal pain. We did just get her diagnosed at the mayo clinic with mast cell activation syndrome. Hoping her new regimen of medications will alleviate her pain enough to go back to school