Unsure if I have MCAS

[Steph2397]

hi everyone! 

I was dxed with POTS about a month ago, and the diagnosis was confirmed at Mayo last week. My symptoms are rapid heart rate when standing, lightheadedness, head pressure, neck aches, chest pain, chest tightness, shortness of breath and occasional palipitations. A new symptom that slowly cropped up and became bad last week and became consistent was throat tightness which can occur at any time but gets worse with eating and sometimes drinking.I started doing more research and I fear I may have MCAS and i basically feel that I have a reaction every time I eat.

The worst that has happened is a tight throat and a little bit of throat itching (minor and only lasts 5 seconds at a time) and occasional chest tightness. The only symptoms I have of MCAS is tight throat, occasional sore throat, occasional itchiness (that i think may be in my head) POTS and that’s it: However, I have cut out almost every food and I’ve barely eaten so I’m losing weight rapidly. I occasionally feel slightly itchy on my skin but no rash really shows up only red where I itch. Since I’ve cut out food, the tightness hasn’t gotten better but some of my other symptoms have gotten better. I can walk for a little longer, minimal chest pain and no headaches. So I am thinking I have some sort of histamine intolerance if not MCAS? The only foods I eat rn are brown rice, quinoa, steel cut oats and a sweet potato and I need to eat more. My holistic doctor said I may have trouble breaking down histamine, but i also could just be tensing my muscles up and the anxiety of it all is making it worse. However, I’m constantly afraid of going into anaphylactic shock, even foods I’ve already eaten. 

I saw an allergist at Mayo and he said to get my blood drawn soon after an attack to look for trypaste, but I heard that wasn’t accurate? He also said food isn’t a trigger of MCAS which I know isn’t true. My question is, am I crazy or is the throat tightness another complication (acid reflux maybe or thyroid issues) or symptom of POTS? Has anyone else experienced this? I want to go to MCAS specialist, but in the mean time I’m going crazy. 

[Pistol]

If you are not eating then you MUST be evaluated. MCAS can be diagnosed with labs as well as urine tests by any allergist. It sounds like you are afraid to eat, that is a problem and you definitely need to see a doc for this. They can do labs to make sure there is nothing metabolic going on or other causes for this. Please - have a physician take a look at you and let them do blood work or any other tests they feel need to be done. If the sensations you feel are anything serious they can find that out with tests. Do not wait until you see a specialist - if you do not eat there may be things going on due to nutritional deficits that any doc can manage. Best to see your PCP until you see a specialist. 

[Steph2397]

Hi Pistol, 

yes I am afraid to eat and I’m aware it’s a problem. I’m trying to slowly introduce foods back into my diet, but it’s hard. I am hoping to see a MCAS specialist while I’m out of town next week, and hopefully get a lot more blood work done. I was just wondering if anyone else with POTS has these symptoms but it’s something else, not MCAS? I want to see what other things I can get checked out. 

[CuriousThinker]

All of these neuro-immune conditions are on a spectrum. There is likely involvement for everybody. The degree to which you have one and not others determines which labels you use. I also investigated histamine sensitivity and later mast cell activation.  You probably have mast cell activation involved, but not to the deadly or extreme extent that a person who is primary mast cell activation. I would stick with the larger neuro-immune picture.

Personally, what I've done is start a strict diet to correct the immune system in hopes it will help after long enough time. I've returned to the original human diet, which is nothing by red meat, animal fat and organs. No plants, no dairy, no supplements. You can look up the term Paleo Medicina and Carnivore Diet and things like that. The key part is zero plants, zero dairy and zero supplements because those all effect the immune system if you are treating an auto-immune/neuro-immune condition.

[StayAtHomeMom]

I have a throat tighness issue. I have to drink while I eat now and there are times it just feels swollen. Had an endoscope done in the beginning and they said I had a stricture but no reason was given. They ablated it but it didn't help. I have allergies but no MCAS. I don't have an underlying cause yet so not sure if that could be part of it. I just eat and drink smaller mouthfuls and drink while I eat. If it bothers me I drink something cold and it opens up a little for me. I would definitely have it looked at though just to make sure. When I first got sick food was hard for me to eat. Honestly I feel better with no bread or pasta but I like breads. Keto diet is my next step as soon as I can find something to replenish my electrolytes so I don't get the keto flu. 

Good luck and I hope you get answers soon. 

[Steph2397]

@StayAtHomeMom thank you for letting me know, this makes me feel a little better. It does help when I drink water while eating too. I will get it checked out, but it's good to know I'm not alone!

[Steph2397]

@dnet let me know if this diet is working for you! I am interested to see if it improves your condition because I am willing to try almost anything (except drugs to help), I'm more on the natural side of things. 

[StayAtHomeMom]

3 hours ago, Steph2397 said:

@dnet let me know if this diet is working for you! I am interested to see if it improves your condition because I am willing to try almost anything (except drugs to help), I'm more on the natural side of things. 

Sometimes drugs are necessary to get it under control to do the natural things. My husband is learning that the hard way. I hate medication, and the idea of being on them for the rest of my life makes me shudder but I take mine grudgingly. Because if I don't I feel awful and I want to not feel that way. 

[Help4Me]

I have ALL of the symptoms you have and I have extremely itchy skin right after eating anything.....I am on a LOW HISTAMINE DIET....but still the suffering continues......I also have all the POTS symptoms.....I have LOW thyroid....so if you haven't had your thyroid checked you probably should....even if it is off just a little you need treatment for it.....this is how I have come to understand this disease works....HIGH HISTAMINE LEADS TO ADRENAL FATIGUE WHICH LEADS TO POTS and other dysautonomias.....there is a lot written on the internet about the symptoms of HIGH HISTAMINE...and you will  see many are exactly the same as POTS and dyautonomia.....I know I have dysautonomia I just am trying to get to the underlying reason for it......I hope you find out too....MCAD is hard to treat too....I get sick from Benadryl and Pepcid and Zantac etc ..the Histamine blockers.......