The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 53

66. How long does it take to react to a trigger?

There isn’t a straight answer to this. The time it takes to react to a trigger is hugely variable. It depends upon the trigger; the strength of the reaction it triggers; the patient; the medications they take; their lifestyle; and other activities that may increase or decrease reactivity. As we have discussed before, the reaction you see from a trigger is often the cumulative result of how much histamine you have circulating at the time, which can be affected by many other things. Reactions can happen immediately or several days later. It is not unusual for mast cell patients to react days later, especially to things they have ingested. This logically makes sense to me as a result of the trigger still being in the GI tract but there is still not definitive proof that explains why you can react days later.

67. What physical things trigger mast cells?

A lot of physical things trigger mast cells. The exact reasoning for why some of these things trigger mast cells is still not well understood. However, these triggers are documented in literature, often as triggers for physical urticaria (hives caused by physical triggers) and/or angioedema (swelling). While reactions to these triggers often start in the skin, the mast cell activation can spread to other mast cells elsewhere in the body. Additionally, patients may not have skin symptoms but have reactions to the following triggers.

Heat and cold can both activate mast cells. Hot water and cold water are both common triggers. Water in general is a trigger for some. Emotional stress is activating, as is various forms of physical stress, including exercise, surgery, physical trauma, infection, or increased activity of another disease. Sweat can be a trigger, regardless of whether the patient is sweating from exercise, heat, or something else. Pressure on the body, even mild pressure, can cause mast cells to release chemicals. Sunlight and vibrations are also known triggers. Mast cell patients are recommended to premedicate before any medical procedure, including imaging like ultrasounds, X-rays or MRIs, as patients have reported activation from these things. Changes in barometric pressure, such as from a change in weather or a storm, are often reported by patients to cause symptoms.

For more detailed reading, please visit the following posts:
Chronic urticaria and angioedema: Part 2

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 52

64. Why do I always have dark circles around my eyes?

It is not unusual for people who are having allergic reactions to have “allergic shiners.” Allergic shiners are dark circles around the eyes, especially evident under the eye where they may look like “bags.” There is not a definitive reason for why they occur but it is thought to be the result of poor circulation near the sinuses. In these patients, nasal congestion is common. This interferes with the normal circulation of blood near the sinuses. The blood “backs up” and pools in the blood vessels nearby. These blood vessels expand to accommodate the extra blood in them. Since the skin is very thin around the eyes, when these blood vessels expand, you can see the blood through the skin, giving an appearance of a dark circle under the eye.

65. Does mast cell disease cause hair loss?

Yes, sometimes. Mast cells release huge amount of prostaglandin D2 (PGD2). They release so much PGD2 that testing for it in urine is one of the more common steps in diagnosing mast cell disease. PGD2 has been linked to hair loss, especially in the scalp of men who experience hair loss. Exactly how PGD2 causes hair loss is still heavily researched, but it seems to stop hair follicles from maturing normally.

PGD2 causes an array of far reaching symptoms. For this reason, many mast cell patients take medications or supplements to decrease mast cell release of PGD2. Aspirin and other NSAIDs are often used. These medications interfere with specific molecules called COX-1 and COX-2. Without these molecules, cells are not able to make prostaglandins like PGD2. There are a number of supplements that can also interfere with one or both of the COX molecules. Curcumin or turmeric is sometimes used for this purpose. (Keep in mind that aspirin and NSAIDs are NOT safe for many patients. Patients should never add a medication or supplement without discussing it with a provider that knows their specific health situation.)

Some medications commonly used by mast cell patients can also contribute to hair loss. H2 antihistamines can sometimes cause hair loss. Some NSAIDS may also do this, even though they should help stop hair loss as I mentioned above. In more serious instances of mast cell disease, patients may need immunosuppressants, interferon therapy, or chemotherapy. These can cause varying degrees of hair loss, too. Steroids like prednisone may also decrease hair production.

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 51

63. Why do many mast cell patients gain weight? Why can’t they lose it?

The most common question I get about weight is “Why am I gaining weight when I can barely eat?” Weight gain, or failing to lose weight, is not unusual for mast cell patients. There are a lot of reasons why this happens.

One of the big reasons why mast cell patients gain weight is because mast cells release molecules that cause inflammation. Some of these molecules are known to be linked to obesity when there is too much of them in the body. Mast cells release some of these molecules, like TNF, and IL-6.

Leptin is a hormone released by mast cells that can contribute to obesity. Patients with obesity often have higher than normal levels of leptin in their blood. In these patients, it seems like leptin doesn’t work as well as in others, so their bodies need to make more leptin.

Leptin’s job in the body has long been thought to tell your brain that you are not hungry. More recent research suggests that leptin doesn’t exactly tell your brain that you’re not hungry, and instead tells your brain that your body is starving. The body responds to this “starving” signal very strongly by trying to maintain or gain weight, and to maintain or gain fat stores.

Mast cells live in adipose tissue (fat tissue), often in significant numbers. Leptin level somehow controls the amount of mast cells in adipose tissue (fat tissue) but we are not sure how. Leptin is one of the ways that mast cells tell other cells to become inflamed. It tells cells to make more inflammatory molecules like TNF, IL-2 and IL-6. Mast cells in inflamed spaces can also attract cells from other parts of the body to come and make more inflammation.

Leptin also directly opposes another hormone, ghrelin. Ghrelin is the hormone that tells your brain that you are hungry. When leptin is high, ghrelin is low. Importantly, ghrelin curbs inflammation and tells cells to stop making inflammatory molecules. If leptin is high, ghrelin is not around as much to stop inflammation.

Another way mast cell disease can contribute to weight gain is by swelling. When mast cells are activated, they release molecules that make it easier for fluid in the bloodstream to “fall out” of the bloodstream and get stuck in tissues. When this fluid is stuck in the tissue, your body can’t just pull back into the bloodstream. It takes days for your body to be able to get the fluid out of the tissues and back into a place where it can be used.

Some of the medications used to treat mast cell disease can cause weight gain. H1 antihistamines are probably the drugs most commonly used for mast cell disease. They can cause weight gain. Steroids like prednisone and methylprednisolone cause swelling and weight gain.

Mast cell patients often have difficulty maintaining a normal sleep schedule. Sleep at night is often not restful because mast cells are very active at night. Not sleeping well can cause inflammation, contributing to weight gain.

Exercise can be very tricky for mast cell patients as well. Many patients are deconditioned and out of shape so even low impact exercise can be exhausting or impossible. Mast cell patients often have restrictions on what exercises they can do safely so vigorous exercise to help regulate weight might not be an option.

Mast cell patients often have little control over their diet due to food reactions, reacting to the process of eating, or having other GI conditions like gastroparesis. Safe foods may not be “healthy” and can contribute to weight gain. (Potato chips are a huge part of my diet as a food that is always safe for me.)

I personally struggled with my weight for years as a result of mast cell disease. It has been my experience that reducing inflammation overall is the only way to lose weight. Of course, it is very difficult to reduce inflammation when you have mast cell disease. In my case, I found that a reconditioning program helped me immensely. This is not safe for everyone and you should never start an exercise program without discussing it with the provider that manages your care.

 

For more detailed reading, please visit the following posts:

Leptin: the obesity hormone released by mast cells
Exercise and mast cell activity
My exercise program for POTS and deconditioning
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part One)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Two)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Three)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Four)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Five)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Six)
Deconditioning, orthostatic intolerance, exercise and chronic illness (Part Seven)

Catharsis

Hello, MastAttackers and Other Good People of the Internet,

A warning that I am about to be super sappy and emotional.

As MastAttack has grown into a sort of rare disease cultural touchstone, my life has become progressively more complex and more stressful. My role as a community resource affects every part of my life, and not always in a good way. In particular, the past year has been difficult for me, for a lot of reasons. There are days when I wake up and want to blow it all up and dye my hair brown and return to a life of anonymity.

But I never do and that’s exclusively because of you guys. It is my privilege to belong to this MastAttack community with all of you. On the hardest days, you really keep me going. You believe in me and that is so, so powerful.

Revealing the plan for MastAttack U to all of you has been cathartic. I am not a fan of secrets and keeping this a secret for so long really disconnected me from the community. On a more selfish level, I was also worried that you guys wouldn’t like it. The positive response to the announcement for next year’s courses has honestly been humbling and overwhelming. It has been my dream for a long time. I don’t have words to describe the feeling I get when I think about being able to teach this course to all of you.

MastAttack may be my idea and my project but it doesn’t really belong to me. It belongs to all of us in this community. It is not something that I am doing. It is something that we are doing. Together, we have an opportunity to develop hundreds of capable advocates for mast cell disease. We could change the way mast cell disease is treated and managed. We could directly impact our own care and the care of other patients by understanding our disease and how to teach others about it. The next generation of mast cell patients could be born into a world where there are hundreds of patients who have educated hundreds of physicians.

In order to achieve this, I have to believe that this will work, and I do. I believe in all of you the way that you believe in me. There will always be hard days and we will learn as we go along what works and what doesn’t. But we are a team. We can do this. I know we can.

So thanks for believing in me and in MastAttack and for being my people. It is pretty much the only thing holding me together sometimes. Sincerely.

I am leaving tomorrow evening to visit with some friends and take a much needed vacation through August 14. After 5pm tomorrow, I may pop in and out a bit online but will mostly be unavailable. I have set up some auto posts on the blog to continue the MastAttack 107.

Any and all questions/patient/meeting requests/masto related communication will be returned after August 14. In the event of an emergency, please contact one of the MastAttack admins for the Facebook group. They can get in touch with me.

Thanks for everything. Hope you guys all have a super week!

Xoxo,
Lisa