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MCAS questionnaire (mast cell activation)

In mast cell activation syndrome (MCAS), the mast cells of the immune system release their messenger substances, such as histamine, too easily. This can cause symptoms in many parts of the body, often in flare-ups. The questionnaire has two parts: first the questions of a checklist, which are evaluated, then additional information for the consultation.

What lies behind MCAS is explained on the page Mast cell activation syndrome (MCAS).

The evaluation is at the bottom of this page and fills in as soon as you answer the first question. Please mention all symptoms, even if they seem minor, rare or unimportant to you.

The result is not a diagnosis. It only shows how your answers are classified according to the checklist. MCAS is a clinical diagnosis made after other possible diseases with similar symptoms have been ruled out. The assessment belongs in the consultation.

Nothing is transmitted while you fill it in. The evaluation is calculated by your own browser; unless you expressly press “Send to the clinic”, none of your answers leaves your device.

MCAS questionnaire · Seegarten Klinik Name:

Part 1: Checklist questions

Tap a section to open it. Choose «don’t know» where you are unsure, and leave out anything that does not apply.

1 Stomach and bowel

I have abdominal pain.

The abdominal pain is burning.

The abdominal pain is cramping.

The abdominal pain comes with diarrhoea.

My abdomen is severely bloated.

The symptoms come and go in flare-ups.

The periods without symptoms have become shorter and shorter over time.

I have bouts of nausea.

Numerous adhesions were found during a laparoscopy or abdominal operation.

During flare-ups, I have itching around the anus.

2 Chest, pain and bladder

I have attacks of burning or constricting chest pain, which sometimes feel threatening. The ECG was normal.

I have pain that does not respond to painkillers, or abnormal sensations such as tingling and numbness, in flare-ups or constantly.

I have recurring or constant pain in the bladder or pelvis, with distressing urge to urinate or blood in the urine, without bacteria having been found in the urine.

3 Attacks

I have attacks of:

racing heart

reddening of the skin, especially on the face and upper body (flushing)

hot flushes

a drop in blood pressure with dizziness or loss of consciousness

temporarily raised blood pressure

4 Exhaustion and weight

Even everyday tasks leave me very weak and exhausted.

Sometimes a leaden tiredness overcomes me and my eyes close.

I have lost weight during phases of the illness.

Body weight

kg

Height

cm
5 Triggers

These circumstances trigger or worsen my symptoms:

physical exertion

heat

cold

stress

alcohol

lack of sleep, that is, more than 24 hours awake

hunger, that is, a whole day without eating

histamine-rich foods such as red wine, cheese or tuna

6 Skin and bleeding

I have hives (wheals).

I have swellings, especially on the face (lips, cheeks, eyelids).

I have reddish-brown spots or nodules in the skin.

I have itching, with or without visible changes to the skin.

During flare-ups, I get acne-like spots beside the nose and mouth, on the chin or on the forehead.

The fine, dot-like dilated blood vessels in the skin have clearly increased.

I bleed for an unusually long time, bruise after minor injuries, or (in women) my periods are heavier.

7 Head, eyes, nose and airways

I have attacks of headache, sometimes one-sided and throbbing.

I repeatedly notice difficulty finding words or concentrating, or periods of sleeplessness.

I have recurring or constant ringing in the ears.

I have recurring or constant eye complaints (dry, itchy, red, burning).

I have a recurring or constant runny or blocked nose.

I have recurring mouth ulcers (aphthae).

I have attacks of throat clearing or a dry, tickly cough.

I have attacks of shortness of breath.

I have attacks of asthma-like symptoms.

After a cold, a bacterial infection has repeatedly followed, for example purulent bronchitis or sinusitis.

8 History and family

I can say fairly precisely when my present symptoms began, because the onset was linked to an event.

First-degree relatives (parents, siblings, children) have or had similar symptoms, such as bowel complaints, intolerances, allergies, migraine, itching, hives, runny nose or ringing in the ears.

Known allergies

Known food intolerances

Medicines you currently take regularly or as needed

9 Medical findings

This information comes from medical examinations. Enter what you know and leave the rest blank. We will complete it in the consultation.

The nausea responds quickly to anti-nausea medicines (5-HT3 antagonists such as ondansetron) or to H1 antihistamines.

Gastroscopy and biopsies

Colonoscopy and biopsies

During a phase of the illness, bilirubin was slightly raised (up to about 2.5 mg/dl).

During a phase of the illness, liver values (gamma-GT, ALT or AST) were raised.

During a phase of the illness, cholesterol was raised, with normal or low body weight.

AST was raised more than tenfold at the same time.

Gilbert’s syndrome or another hereditary raised bilirubin has been confirmed genetically.

Low levels of autoantibodies were found without any organ being affected.

Tryptase in the blood

N-methylhistamine in 24-hour urine

Chromogranin A in the blood

Heparin, factor VIII or fibrinolysis in the blood

The spleen was enlarged on ultrasound.

The liver was enlarged on ultrasound.

A bone density scan showed osteoporosis or osteopenia.

A whole-body bone scan showed areas of increased bone metabolism without an apparent cause.

Other abnormal laboratory values, with the value

Part 2: Additional information

This information does not count towards the evaluation above, but it helps us with the assessment.

10 Severe reactions

Have I ever had a severe allergic reaction with difficulty breathing or circulatory collapse (anaphylaxis)?

I carry an emergency kit with an adrenaline pen.

11 Other triggers

What else triggers your symptoms?

Other triggers

12 Tryptase at rest and during a flare-up

If your tryptase has been measured before, enter the values from the laboratory report, in ng/ml (equal to µg/l).

Tryptase at rest, without symptoms

ng/ml

Date of this measurement

Tryptase during a flare-up

ng/ml

How many hours after the start of the flare-up was the blood taken?

hours
13 Further tests

Leave blank what has not been tested or what you do not know.

Prostaglandin D2 or 11β-PGF2α in the urine

Leukotriene E4 in the urine

KIT D816V mutation in the blood

TPSAB1 gene (hereditary raised tryptase)

Bone marrow or skin: biopsy result

14 Related conditions

Which of these conditions have been diagnosed in you?

15 Already ruled out

These diseases can cause similar symptoms. Tick those that have already been investigated and ruled out in your case.

Hormones and metabolism

Stomach and bowel

Immune system and tumours

16 Previous treatment

Only for what you have used, choose how it worked.

H1 antihistamines (cetirizine, fexofenadine, rupatadine, desloratadine)

H2 blockers (famotidine)

Cromoglicic acid

Ketotifen

Montelukast

Diamine oxidase (DAO)

Vitamin C

Quercetin

low-histamine diet

Other medicines and treatments, with their effect

Evaluation

Nothing answered yet. The evaluation appears here as soon as you begin.

Keep the result

You can print the questionnaire and bring it to your appointment (then nothing is sent over the internet). Or you can send it to us; then it will be ready for the consultation.

Send to the clinic

For this we need your name and an email address. Your details go to Seegarten Klinik and nowhere else; what happens to them is explained in the privacy policy.

You can upload laboratory and medical reports separately.

By sending, you transmit your details and the evaluation to us.

Where the questionnaire comes from

  • Part 1 is based on the checklist by Molderings GJ, Homann J and colleagues (questionnaire for the detection of a mast cell mediator syndrome). Molderings GJ et al. Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options. J Hematol Oncol 2011;4:10.
  • Valent P et al. Definitions, criteria and global classification of mast cell disorders with special reference to mast cell activation syndromes: a consensus proposal. Int Arch Allergy Immunol 2012;157:215-225.

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