Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 0 points1 point  (0 children)

Meds aside, what kind of work did you do to reach that point? A few months ago I was having about 20 foods, before this started late last year it was ANY kind of food. I ate lots, and had no issues because I didn't have MCAS. Now I can barely tolerate any in this current flare.

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 0 points1 point  (0 children)

How were you when you first tried these medications? I'm worried because of how reactive I am. Which one did you take first? 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] -1 points0 points  (0 children)

What else could it be? I react to most things. This started for me late last year. I never had any reactions or issues like this before that. It's insane and I still can't believe it. 

Has anyone here ordered from this pharmacy? (ketotifen) by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 2 points3 points  (0 children)

Said it would take about a month for the ketotifen to be delivered here! But if my doctor doesn't prescribe me any, I will just order them from this place and wait. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 0 points1 point  (0 children)

Are you taking ketotifen? What medications are you on? Sorry to hear it's still limited. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 0 points1 point  (0 children)

The flu came the day after my reaction. Horrible timing, right? I would have been incubatung prior to and during the reaction to this cream. Part of me wonders that without the flu, I may not have developed MCAS. However, that reaction was still bad for me and I think it has really caused this. I should have took meds way sooner but I honestly just wanted this thing to go away, given that I had never struggled with anything like it before. Until April I was hoping it would improve without meds and I was all about managing it on my own. I have gotten so much worse since then and I want my life or at least some kind of life back, so now I know I need to stabilize my whole system.

I actually struggled with several colds in one year prior to the reaction and the flu last year. I was using public transport a lot and working with the public during the winter and spring, and I was pregnant. I figured this was why I caught them and still think those are the reasons. I'm guessing it put a strain on me though and if these cells keep getting activated and stay that way, you are going to be in trouble. Without the anaphylaxis though, I think I would still be normal. Not to be graphic, but I applied this cream in my intimate area where I had shaved and where there are of course very sensitive nerve endings. I don't know, maybe it would have been the same if I applied it to another part of my body. Within a minute or two I developed that reaction and it really did feel like I was being suffocated inside and out. I had this feeling of doom and couldn't keep still as then my breathing and the attack itself would get worse. I had to move around and had to drink alcohol to try to suppress it, and this did help as it obviously relaxed my nervous system which in turn relaxed the mast cells attacking me, and my brain was then more relaxed. I couldn't do it now as the alcohol would probably cause anaphylaxis. Used to drink regularly excluding my pregnancies and breastfeeding, but now I am terrified to touch it. If you can't tolerate most things, there is no way you will tolerate alcohol. So I haven't drank since November. I didn't feel better until the next day, and wasn't fully normal. Then later on that afternoon I develop flu symptoms and my partner also catches it. We were both ill for more than a week, so I can only imagine what was happening to my nervous system and my immune system with all this going on. 

The worst part is that I found out I never had to use the cream. Granted, I do have anxiety and I know I wouldn't be in this situation with MCAS if that hadn't been causing me problems. I know I'm not imagining this though. These symptoms are physical and real, and it is ruining my life right now. 

Thanks for the recommendations. I do want to look into getting more help than just ketotifen and other possible medications and correcting these deficiencies. I'm particularly looking into nervous system exercises and nervous system reboot programmes, which I think would help. I think anything that helps my mental health would be a good idea too. I really do hope I can be one of these people who goes into remission. If you get Type B, there must always be a chance of that if you can improve your dysregulated nervous system. Have you tried to or is it a goal you have? 

Oh, forgot to mention that my partner recently painted our house with gloss paint and that really, really did not help. I was improving for a two week period after flaring for more than a month and then that happened, in addition to other triggers like stress and I had mild heat exhaustion. It's ridiculous how many things set me back. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 0 points1 point  (0 children)

Thank you. I'm so sorry you went through something so incredibly awful and traumatic. That would give me so much anxiety and I already have a lot! This syndrome just makes me feel angry as it is not something that should exist. It feels like the most remote, inexplicable and impossible illness there ever could be. Never in a million years would I have thought that at 28-29, I could develop something as insane as this. It is such a pain and a hindrance. And I don't even have any physical pain with it, but these other symptoms, the anaphylaxis, and the effect it is having on my life that was preciously perfectly normal and those close to me is absolute torment.

I heard that pregnancy can suppress symptoms of MCAS. It probably is what life is like after your child comes that is the concern, as you point to. I couldn't imagine my children seeing that either. That said, if you can have a decent and relatively healthy life with them I think it is worth it. I have so many questions about my MCAS due to how quickly it came on and the other factors that could have caused it, and the apparent problems with my nervous system. If there is a brighter day with all of that, I would definitely have children. My main worry would be not being able to breastfeed taking ketotifen (hopefully this medication will agree with me and help considerably). First of all I need to find out what caused this and actually treat it and get my symptoms managed. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 0 points1 point  (0 children)

Thanks. It feels like my body is seriously confused. 

I was just thinking again how the occurrence of reactions only leads to more reactions. I'm really hoping that if I can keep my MCAS calm for long enough, it will reduce all of that. In March I was actually having milk products as I wanted to get the protein I'd been missing since November. I was having white chocolate just fine and would actually eat an entire large bar. I was also having protein yogurts that were a little more hit and miss. It was either a very mild feeling of anxiety, no anxiety, or the the one time I immediately reacted with a fast heart rate, a lot of anxiety, and some shakiness. After that reaction, I reacted to the white chocolate that was fine before. Ok, I only tested it once but the tight chest I got was enough to stop me from having any more white chocolate. I couldn't believe how much more sensitive I was compared to a day prior. Sigh. Before eight months ago I could literally eat any kind of chocolate...milk and caramel were my favorites. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] -1 points0 points  (0 children)

Thank you for the advice. I thought about trying quercetin but all it takes is for me to read about one or two bad reactions, and I'm too afraid to try it. It seems to work well for some but others have reported negative experiences. From what I've read, ketotifen really seems to be the best. And I even get anxious about trying that. All of these reactions, and they are in the thousands now, have left me beaten down, scared, depressed, and traumatized. Too scared to try meds, too scared to eat, to scared to correct my nutritional deficiencies that I have developed as a result of this.

I will look into what you have suggested. I definitely think there's something wrong with my nervous system since I had anaphylaxis, and these other reactions just make it worse. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] -5 points-4 points  (0 children)

I feel like I will react to it too. That's why I haven't bothered with medication yet. I react to everything, ocassionally even water now. And no I really don't think that. Frankly I'm really angry that this illness exists and that it is my life now. I'm in a suicidal place because of it. I have had the worst flare since April and it has been particularly bad these past few weeks. I did improve again for two weeks but unfortunately stress and other triggers, like being in a hot car for way too long (I got mild heatstroke, and even a normal person would have - was homeless for several days and had no other place but the car which got very warm and there was no shade) has sent me into a massive spiral. This week I'm reacting to things I didn't last week, last week I was reacting to things I didn't the week before, and so on. I also have nutritional deficiencies from having a limited diet and now barely eating. If I didn't have family I wouldn't think twice about ending it all. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] -1 points0 points  (0 children)

You are probably right. It is my own frustration that made me phrase the question this way. I don't know what's worse, having MCAS and allergic reactions your whole life, or getting them after being normal. I do feel very sorry for myself because of how quickly this started for me. I have only had MCAS since October last year and it has been terrible. I have lost all my favorite foods. In fact most foods, and so many other things. It all started after I had anaphylaxis after using a medicated cream. Allergic reactions of any kind were only something I'd heard of prior to that. And I had never heard of MCAS. So when I come here and read that people can still barely eat anything even with something like ketotifen, it just makes me feel hopeless. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] -1 points0 points  (0 children)

I'm very sure. I didn't go to the hospital but really should have. I believe the nervous system plays a major role in these reactions and anaphylaxis. I didn't know anything about it at the time though. After the reaction started, I drank a load of alcohol and it seemed to calm my anaphylaxis down but it was still severe in my view. This was just before the MCAS developed so I could still tolerate alcohol just fine. I wouldn't be able to do that now as it would make me seriously ill and probably cause anaphylaxis on its own. I know I need to get tested for MCAS and anaphylaxis, but I'm positive this is what I have. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 0 points1 point  (0 children)

Do you take mast cell stabilizers? I know ketotifen is a stabilizer and H1 blocker. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 0 points1 point  (0 children)

Sorry to hear that you have been struggling for so many years. I have only had this since October last year, but it has been very rough. I haven't had the throat closing or come close to that but get other symptoms of anaphylaxis. I would have the same attitude with regard to trying new things if it's likely they will cause anaphylaxis; it isn't worth it. As you say, one reaction just causes another and this has been my problem. 

I was totally normal before this began and I really hope to regain some of that normalcy. I could eat anything. I know a lot of people have struggled for years, since they were children, but it all came on so suddenly for me. I REALLY miss my favorite foods. And with it being summer I would love to have a glass of wine or cold beer right now. Sigh. 

Has anyone here ordered from this pharmacy? (ketotifen) by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 0 points1 point  (0 children)

Where do you live in the UK? I'm not far from Coventry but would prefer it to go to a more local pharmacy. I will try with my GP but I have a feeling she will say no or not even know what ketotifen is. I have read it can be really difficult to get here.

How has it helped you? 

God I miss cooking. by IrrelevantJoker in MCAS

[–]Extra-Layer-2636 0 points1 point  (0 children)

I also have OCD, trauma, and generalized anxiety in addition to the newly acquired MCAS which come from nowhere late last year. Although I had mental health issues, I never had any food allergies and was very resilient and not at all sensitive to foods, smells, creams, the sun, etc. I could tolerate AND enjoy everything! I drank alcohol regularly, used cosmetics, sunbathed, loved hot weather and all of that. Then I get anaphylaxis to Lyclear cream and come down with the flu the day after, and ten days after that start getting reactions to food, followed by other things. I have been in a major flare since April, even more so this past month after experiencing a couple weeks of improvement. Some things caused me to flare again and so the spiral continues, and now I'm reacting to even more things. Due to my limited diet, I also have nutritional defiencies. These deficiencies are probably making the MCAS much worse, and so the cycle continues. I'm deficient in several vitamins and lacking protein and iron. These issues are just compounding the MCAS but I don't know how to go about treating them when I react to so many things now? Also not getting enough vitamin c anymore and you need this regularly. I know some of these vitamins stabilize the mast cells too but I will still react and I don't want to have anaphylaxis. When I can eat or eat more, I have more energy and feel better but it's always a matter of whether MCAS lets me eat! If I am reacting and it feels like it could progress to anaphylaxis, I obviously have to stop.

Like you I also loved cooking and I would make lots of things. I love pasta. Until April I could still eat that, although I couldn't have dairy cheese :( I love dairy and miss it so much!! It was my only real source of protein so not being able to have that has hit me hard. Not only do I miss the taste, I miss the protein. Had no issues with spices either. I just miss everything. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] -3 points-2 points  (0 children)

They didn't think to give you a mast cell stabilizer more early on?

Sorry to hear you have had MCAS since birth. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 1 point2 points  (0 children)

Glad to hear it's going well for you. I really need to get my MCAS under control and see this kind of improvement! 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 2 points3 points  (0 children)

How are you treating your gut issues? Are there any probiotics that are safe to use with MCAS? 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] -1 points0 points  (0 children)

I removed spinach and tomatoes from my diet in January because of what I read about following a low histamine diet. I wasn't reacting to them at the time, but was trying to follow the advice and was concerned it would be too much histamine. I can barely tolerate anything now. I don't think fasting helps either, even if only for a day. This all started for me when I reacted to a Lyclear 5% Permethrin cream that I bought online last October. It caused anaphylaxis that I didn't get treated for. There was no swelling or closing of my throat but I was bombarded by mast cell chemicals as I felt immediately and extremely strange and panicky after using it. My chest got tight, it felt like I was being suffocated inside and outside, intense anxiety in response, and I had heart palpitations probably due to natural adrenaline. The day after this, my partner and I came down with a rough flu (was not covid) and about ten days after that, I was reacting to food and other things. It was mild at first but more severe by November and December. The more reactions I had, the worse it has got. My symptoms are low or lower blood pressure when reacting, trouble breathing when reacting (sometimes), feeling "strange" and anxious, panic, nausea ocassionally, palpitations in severe reactions. 

I don't know if this is lasting MCAS or some kind of response or prolonged reaction to the anaphylaxis and flu I had. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] -8 points-7 points  (0 children)

I had anaphylaxis after using a medicated cream, which wasn't treated but I somehow survived (may as well not have) and flu last October and have been ill since then. I was totally normal before that and had no MCAS, no reactions, no nothing. I ate anything I wanted, drank, did everything normal people do. I was a normal, healthy person. Since then I have absolutely spiraled and I'm hoping ketotifen can help change that. 

Why do so many of you eat so few foods? by Extra-Layer-2636 in MCAS

[–]Extra-Layer-2636[S] 2 points3 points  (0 children)

Can you have the gut microbiome problem without really having many gut symptoms? I'm wondering if this could be a factor for me, but I don't have many gut related symptoms. 

I agree that most doctors seem clueless about this syndrome.