Overwhelmed and confussed

POTS is fairly common alongside any mast cell disorder (so is Ehlers-Danlos Syndrome). I'm sorry you are feeling overwhelmed! It does get better. I have MCAS which is another type of mast cell disorder, but symptoms are more or less identical to SM.

Low FODMAP helps me to some extent, but mostly because onion and garlic are triggers for me. Low histamine diets are typically more beneficial to most.

The sucky thing about mast cell disorders is that everyone with one has their own set of triggers and symptoms. For me, the drugs to treat them simply lowered the overall severity of my symptoms. I still need to avoid my triggers whenever possible.

The best website for information is "mast attack." Google mast attack and you will find it imediately. Use the menu there and probably start with "The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases"

It will give you more accurate information than anywhere else. The author, Lisa Klimas, is a research scientist who has SM, POTS, and EDS. She cites the research papers she used for references in each story at the bottom, and she is meticulous about sticking to information backed by peer reviewed research.

The largest communities of other people with mast cell disorders are on Facebook. Just search for groups there. You will find many. More of us have MCAS than Mastocytosis, but the treatment is the same, the symptoms have the same range, so most of the information that is valid for MCAS is valid for Mastocytosis. Be forwarned, there's a lot of personal theories on the Facebook groups that's less accurate. (Like blaming it on mold,. Or "leaky gut" etc). However there's a lot of experiencial information available in the Facebook groups.

I'm sorry you are feeling overwhelmed, but it does get better! The good news is treatment definitely improves symptoms. Although it might take a while to identify which antihistamines work best for you. Some people find that Allegra works better than Zyrtec, some find that Claritin does, others swear by Zyrtec. Some people react to one, but not another. And that's just the H1 antihistamines. Same thing goes with the H2s. I realize this might be a bit much, but I'm including it, so you know not to get discouraged if the first antihistamines you try don't help as much as you like. There's several to try on both classes.

I've been diagnosed with the cutaneous version of mastocytosis.  In the past year, I've taken a lot of medication and while it's working for me, I know that the food component is part of this--fill the histamine bucket and it will eventually overflow into a reaction!

So I'm taking advantage of the fact that my spouse's health insurance covers a dietician and will be working with her on an elimination diet to see if we can identify food triggers.  It is recommended that this be done under the supervision of a dietician or doctor, so I wouldn't recommend doing it yourself.  She gave me the paperwork for the Bastyr elimination diet and we discussed FODMAP a little but are just getting into the weeds on this one.

From what I understand, everything we eat has the potential to increase our histamine load.  And everyone may have sensitivities to different foods, even if they're not allergic to them.  I'm hoping to get a handle on sensitivities along with watching histamine levels in food so I can possibly reduce my med load.

Hi Mandy!

First off let me start by saying I can totally relate to your feeling overwhelmed, I began suffering similar symptoms  over 4 years ago that gradually escalated to include multiple hospitalizations as it began to affect my GI, pulmonary and cardiovascular systems.

After multiple doctors, tests and bone marrow biopsy I was referred to the Mayo Clinic and thus began the journey down the path of systemic mast cell and it was then that I was introduced to a low histamine diet plan in the hope that it would reduce the number of severe reactions I was experiencing. Let me just say, although not always easy it has helped. It has now been 1.5 years since my last major reaction that nearly claimed my life. I have had minor reactions as it is not always possible to control environmental triggers (i.e. perfumes, airborne food smells, etc), however through a disciplined low histamine diet and a daily regime of H1 & H2 blockers (for me Zyrtec & Famotidine work best) I have been able to significantly reduce symptoms and my body is more responsive to oral meds (Benadryl and steroids) during more acute attacks vs the necessity of an epi injection.

As you go through this journey just remember it is a marathon not a sprint, and as such you need to know there will be times where your energy is diminished and emotional mindset may wain, this will NOT always be the case, it does get better. Try not to look at the disease as something that is controlling you, I took back the control by doing what I could to reduce symptoms. When I began the diet, I had the mindset that it was similar to that of a diabetic who must be aware of blood sugar, only for me it was educating myself on what foods contained high levels of histamines or what things triggered reactions (i.e. stress, extreme temperature changes, pollen, etc.) more than others. By the simple process of educating myself against the enemy I felt like I regained control, I feel armed and ready. 

It is also important to ensure that should you find yourself with a confirmed diagnosis, is to ensure that you are seeking doctors who understand the difference between mast cell disease and severe allergies. I learned this lesson the hard way as when my symptoms first began escalating to anaphylactic responses and would find myself in the hospital the ER and admitting doctors would go about treating as an allergy which I have come to learn from my hematologist and immunology specialists are not always sufficient and can lead to serious secondary issues (for me it was kidney/ liver damage due to the beating they took from over-use of steroids and epinephrine). I now wear a medical alert tag, and my family (husband and children) are able to communicate to emergency personnel when I am unable to speak for myself. I also have a medical folder that goes to the hospital with me that includes contact info for my primary doctor team that should I find myself in a hospital with physicians less familiar with Systemic Mastocytosis can refer to and consult with primary medical team on proper course of action.

Below I have included a few links that I found helpful in better understanding what I am living with.

[u]Resources/ Informative Articles:[/u]

http://mastcellresearch.com/2017/07/11/updated-message-dr-lawrence-afrin/

https://drruscio.com/mast-cell-activation-syndrome-clinician-researcher-dr-lawrence-afrin/

https://www.healthrising.org/forums/resources/mast-cell-activation-syndrome-disease-doctors.340/

[u]Links to Low Histamine Diet/ Foods:[/u]

https://www.livestrong.com/article/325513-the-low-histamine-diet/

https://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

Best wishes and prayers to you,

cody