Mast Cell Activation

I am 65 years old and have basically been undiagnosed since 14 years old . I have had my DNA done ...and through an ad dropped on my messenger feed I THINK I may have found out what I have but it is hard to suggest anything to a doctor as they do not respond well to ones findings. So a readers digest version ....had tachycardia since puberty ( hormone induced I suspect) I had a miscarriage at 21 , gall bladder removed at 30 , carcinoid syndrome and tumour roved from lung at 55 , diagnosed with rheumatoid , lupus or mixed connective tissue disease at 56 . My daughter and her son also had sudden onset of tachardyia at 14 years of age ...daughter now has EDS and mixed connective tissue disease and grandson has POTS . Ok back to my messenger feed ...I had a ad talking about MCAD ....so I checked my DNA that I had done thro 23 and me. I put in the raw data and this is what came up? Should I show my doctor?

Welcome to Connect, @antessa. Thanks for sharing the insight; I'm sure @defeatedsteph will appreciate the information. May i ask what brings you to Connect?

I read that if the urine and blood tests are not put on ice immediately they will come back normal... hope this helps

Does anyone know if the amount of medication that I am taking effecting my tests results? making them come up negative especially during an attack where i take benadryl by the mouthful, beanery pills and epipen? both my family doc and allergist think that taking me off my meds is life threatening even for a few days, but how will they be able to get accurate results? Also, it makes it difficult cause none of my symptoms are consistent since they come and go.............

Yes! My doctor told me that symptoms of MCAS do get worst with stress.... being negative or positive stress, the body does not discriminate good or bad. Stress is stress. He told me try and control my emotions, stress levels by any means including my anxieties as it escalate my attacks. Meditation, mindfulness and weekly counselling. I struggle everyday with this! I can even be overly excited since it can trigger an allergy cascade. My emotions have to be as bland as my food. Also, I only eat white fish and white meat on a paleo diet, gluten free and preservative free including soy. This seems to help me have somewhat of a functional life.

Hi Everyone,
I am looking for any help, ideas or support. I feel so defeated. Still NO Diagnosis. I relate to everyone else on the blog that says they feel they are going crazy!! A doctor has even told me that my symptoms are obviously in my head and need to check out psychiatric since my tests are negative….Ok, so here is my story. I am 30 and going on 5 years with dealing with this madness and I am exhausted being my own advocate. I have seen so far up to 12 specialist each in their own specialty to figure out my various symptoms. I have always suffered from severe environmental allergies and asthma, but 5 years ago everything changed. I started getting worst without any obvious reasons. Loosing consciousness after eating, becoming allergic to foods I never been before; drugs as well; brain frog; massive weight gain or lost; body pains (I feel like im 86); face flushing; tongue/face/hands/legs swelling; Gastro issues; persistent fatigue…ect.. you name it I have experienced it all except the typical mastocytosis rash.

I have since had over 12 related ER visits including 4 Idiopathic anaphylaxis reactions; 3 Food related anaphylaxis; 1 insect sting anaphylaxis (then test negative for insect bites both skin and blood). I test negative for all test, allergy, tryptase serum, 24hr urine test, but still struggle everyday with my allergies. I take daily 40mg citrizine; singulair; symbicort nose pray; zantac on/off. Still can’t control these attacks and it is becoming destructive on my life since I no longer go out, lost work, postponed school. I now only eat a low-histamine Paleo white meat only diet and if I dare become lax on my strict diet I pay the consequence dearly.

To complicate things even more, I was diagnosed with a large brain tumor and 3 weeks later had emergency brain surgery 6 months ago. So my doctors at the moment all said that my symptoms have been compounded and now cannot distinguish some of the symptoms thus will not make a clear diagnosis of MCAS without positive tests results. But my symptoms and attacks keep getting worst since surgery.

Last year I was lucky and found a family doctor that believes something is wrong since I presented my medical binder (2inchs thick!!); Records and test after test and research articles for everything I was tested on! I am on my 3rd allergist and he seems to take my case seriously when I see him every 6 months. He mentioned that the Mayo clinic may help us find a diagnosis that deal with difficult cases of MCAS, but I live in Canada and cannot afford airfares and medical test in the US. Is there anyone that knows about funding, or test kits for my doc? Or even the cost of being diagnosed? Any resource? I’ll take any ideas or suggestions and even words of encouragement. ☺

I understand that a diagnosis bring little relief since there is no cure. It would stop the ER docs from thinking I’m the crazy lady, or worst! Delay treatment like I had a few times (cause they never seen or heard case like mine before) when I present with atypical allergic reactions.

In my experiences very few doctors know about MCAS and fewer know how to treat it and less diagnose it. ☹

I’m so sorry for the long story but I feel everyone can relate because cases of MCAS are beyond complicated.

i'm exhausted and feel defeated

Hello @lookingforanswers2017,

Welcome to Connect. I can only imagine your worries, and want to reassure you that you are not alone. We're so glad that you've reached out to the Connect community for support. I'm certain that @danmlee @dolan @mjgarr @mepslissy @jools @allergynightmare @jbhmaine @lean1 will return to share their insights with you.

I'd also like to mention that Mayo Clinic physicians have a special interest in the diagnosis and treatment of systemic mastocytosis — mast cell activation syndrome. As part of their research, they have discovered several new syndromes and identified how mast cells and eosinophils play a role in a variety of diseases. You can read more about the program here: http://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/systemic-mastocytosis-care-at-mayo-clinic/ovc-20324430

Research studies have shown that many skin disorders worsen during stress and are associated with increased numbers and activation of mast cells. Here's an article that reports on depression in patients with mastocytosis: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0026375

@lookingforanswers2017, has your doctor recommended any stress relieving approaches, for example meditation? Have you found it beneficial to change your diet?

@lookingforanswers2017 I know nothing about this condition but I just want to say you have come to an amazing community of helpful people. I am sure there are people who do know something about this and can understand and perhaps suggest things.
I hope for the best for you in that endeavor and that you will find some real help with this condition.
JK

Hello Everyone,
I am new here looking for a supportive community who understands Mast Cell disorders. I am 34 years old and my vague symptoms started 3 years ago with feeling heat intolerant (always hot/overheating), low grade fever, and weight gain. I thought it was related to hormones because I don't have my period anymore and I have PCOS. Well after my aunts breast cancer spread to her brain in October, i was severely stressed out and my heat intolerance turned into sever flushing in my face and entire body that I thought was an allergy to a food. I went to see an allergist and he tested me for 24hr urine Histamines and that came out positive 8x the normal upper limit. Next he is testing for tryptase and a few other labs. I am in shock that this is happening to me and I need some support and survivor strength. Has anyone thought that their symptoms get worse with stress or depression? Has anyone switched their diet to vegan? Thanks, everyone!

Welcome to this blog and besides the health issues you have I DO UNDERSTAND how frustrating health, mental or physical, can be. Trying to get someone to understand, to find something, to give you answers...And wanting to give up. I have waves of that. Tired of the medication, tired of doctors, tired of issues...But I talk to someone. Parish nurse, doctor, counselor... Keep fighting. We have to be our own advocates. I've learned that. Getting a referral to Mayo helps. I have systemic mastocytosis. I was diagnosed 14 years ago. It's rare, incurable but treatable and am lucky to be indolent at this time. Please keep fighting for YOU....You are worth it. Prayers...