Spryte Posted March 21 Author Share Posted March 21 I’ll feel this doc out, he was the one the ER doc said he’d take his own family to see. I have another lead on one, but I only know that he’s very good with food allergy patients. If all else fails, I will go to our kids’ immunologist two hours away. In another moment of You Can’t Make This Up, DH is on a flight from the EU, and emailed before take off that the elderly man directly behind him was having an allergic reaction to tree nuts. He took Benadryl and says he’s fine, but coughing. He stayed on the plane. I really hope he’s ok on the flight. 5 Quote Link to comment Share on other sites More sharing options...
Spryte Posted March 23 Author Share Posted March 23 Update to the anaphylaxis saga: MCAS, most likely, but definitely mast cell involvement. No testing today, I’m on too many meds. I started on anaphylaxis preventative shots today. Will take a while, and I sure hope our insurance covers them — working on the authorization. I’m bright red again at the moment, but no throat issues. I really don’t want to epipen again, so fingers crossed. I feel like a walking time bomb. But more hopeful — this could also answer a lot of other questions. Thank you all for the support this week! 10 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted March 23 Share Posted March 23 Thanks for the update; you've been in my thoughts the last few days. I hope you don't have to epipen again either. 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted March 23 Share Posted March 23 Praying you get clear of this. Keep us posted. 1 Quote Link to comment Share on other sites More sharing options...
Halftime Hope Posted March 23 Share Posted March 23 3 hours ago, Spryte said: Update to the anaphylaxis saga: MCAS, most likely, but definitely mast cell involvement. No testing today, I’m on too many meds. I started on anaphylaxis preventative shots today. Will take a while, and I sure hope our insurance covers them — working on the authorization. I’m bright red again at the moment, but no throat issues. I really don’t want to epipen again, so fingers crossed. I feel like a walking time bomb. But more hopeful — this could also answer a lot of other questions. Thank you all for the support this week! @Spryte I missed this whole thread this week. I'm so sorry your dealing with this, and I wish you well as you continue your journey. Dd is dealing with something similar post_Modernas (first) and later 3x covid. She's been all over the board, and is getting better, but she's been told MCAS is likely and that she's celiac. (Thrill...) Hoping you are getting much better! 1 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted March 23 Author Share Posted March 23 10 hours ago, Halftime Hope said: @Spryte I missed this whole thread this week. I'm so sorry your dealing with this, and I wish you well as you continue your journey. Dd is dealing with something similar post_Modernas (first) and later 3x covid. She's been all over the board, and is getting better, but she's been told MCAS is likely and that she's celiac. (Thrill...) Hoping you are getting much better! Oh, I’m so sorry about your DD. How is she doing? I would love to have a conversation about all of this and compare experiences. My first probable MCAS crisis came just after our family may have had Covid (or the nasty adenovirus that went around in winter of 2019/2020, there was no Covid testing). Then after my first Pfizer shot, and then subsequently after the next three shots. I never had idiopathic anaphylaxis till now, though. Quote Link to comment Share on other sites More sharing options...
KSera Posted March 23 Share Posted March 23 53 minutes ago, Spryte said: Oh, I’m so sorry about your DD. How is she doing? I would love to have a conversation about all of this and compare experiences. My first probable MCAS crisis came just after our family may have had Covid (or the nasty adenovirus that went around in winter of 2019/2020, there was no Covid testing). Then after my first Pfizer shot, and then subsequently after the next three shots. I never had idiopathic anaphylaxis till now, though. If you visit any Covid long hauler groups, you will find lots of discussion about post Covid mast cell disorders. There are people down to having only a handful of foods they can still eat. (If you are familiar with Physics Girl, she’s one in that situation.) I had forgotten about this, but in 2021, someone I knew casually kept having anaphylaxis with major face swelling after Covid. She was out of work for several months, but then it settled down and it didn’t seem to be a problem after that (I didn’t know her well enough to know what was going on behind the scenes, but she was back to working regularly and abandoned Covid precautions when most other people did and from the outside appears to just be living normal life.) I share the anecdote just to balance out the long hauler stories, so it doesn’t sound like everyone who has this deals with it forever 1 Quote Link to comment Share on other sites More sharing options...
Katy Posted March 23 Share Posted March 23 So idk about timing with all the drugs you’re on. But when I was having mast cell issues and three food allergies, taking 4 courses of Elixa probiotics fixed it for me. I actually may need to do it again after my last round of antibiotics, I’m starting to get skin reactions again. Anyway, I ordered directly from their site (kinda expensive), took them in the morning on an empty stomach, and followed up with yogurt mixed with a spoonful potato starch mixed in afterwards. 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted March 23 Author Share Posted March 23 21 minutes ago, Katy said: So idk about timing with all the drugs you’re on. But when I was having mast cell issues and three food allergies, taking 4 courses of Elixa probiotics fixed it for me. I actually may need to do it again after my last round of antibiotics, I’m starting to get skin reactions again. Anyway, I ordered directly from their site (kinda expensive), took them in the morning on an empty stomach, and followed up with yogurt mixed with a spoonful potato starch mixed in afterwards. Thank you! I will get through the next few weeks and try this. I’m always up for probiotics. Quote Link to comment Share on other sites More sharing options...
KSera Posted March 23 Share Posted March 23 39 minutes ago, Spryte said: Thank you! I will get through the next few weeks and try this. I’m always up for probiotics. You might look for the ones specifically selected to be low histamine. I have found selecting a MCAS-friendly probiotic to be confusing, but there are some brands marketing ones that they claim include only low histamine strains. 1 Quote Link to comment Share on other sites More sharing options...
Spryte Posted March 23 Author Share Posted March 23 So, for anyone with experience with this: what on earth should I eat right now? Thinking low histamine? Single ingredient foods? Every ingredient in the food that started all this is in my normal rotation, but obviously I’m avoiding those. I don’t want to have another epipen moment, but I’m a bit scared of food. I have lost 7 lbs since Monday (I’m short, and it shows, which isn’t all bad but not a good way to lose weight!). I’m finally hungry. I had never even heard of idiopathic anaphylaxis, and I’m not up to researching a ton. 6 Quote Link to comment Share on other sites More sharing options...
KSera Posted March 23 Share Posted March 23 I’m not at all an expert, so I only know what I know from learning about MCAS and reading what other people do to help, but I know some big triggers are beer, other alcohol, anything fermented, citrus, tomatoes, smoked or preserved meats, leftover food. Oddly, I have read a lot of people who say a carnivore diet helps immensely when they’re in this state. I don’t know a lot about what that looks like except that it’s not the same as a keto diet; you don’t want to go into ketosis. I know it’s no processed meats, fresh grass fed meat cooked that day. I don’t recall if you eat meat though. If you do, it could be one of the safer things to start with, assuming you don’t have any concerns that this is actually a red meat allergy post tick bite or something. 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted March 23 Share Posted March 23 44 minutes ago, Spryte said: So, for anyone with experience with this: what on earth should I eat right now? Thinking low histamine? Single ingredient foods? Every ingredient in the food that started all this is in my normal rotation, but obviously I’m avoiding those. I don’t want to have another epipen moment, but I’m a bit scared of food. I have lost 7 lbs since Monday (I’m short, and it shows, which isn’t all bad but not a good way to lose weight!). I’m finally hungry. I had never even heard of idiopathic anaphylaxis, and I’m not up to researching a ton. I’d start with the least allergenic safe foods you have first—rice would be that place for me. Build up slowly to allow for delayed reactions. 1 Quote Link to comment Share on other sites More sharing options...
Halftime Hope Posted March 23 Share Posted March 23 3 hours ago, Spryte said: Oh, I’m so sorry about your DD. How is she doing? I would love to have a conversation about all of this and compare experiences. My first probable MCAS crisis came just after our family may have had Covid (or the nasty adenovirus that went around in winter of 2019/2020, there was no Covid testing). Then after my first Pfizer shot, and then subsequently after the next three shots. I never had idiopathic anaphylaxis till now, though. She is doing much better, and didn't have the horrible post-COVID symptoms as badly after the third round of illness. She is in an area of the country that has great medical research facilities, and over time, her medical team has diagnosed and later abandoned the diagnosis for several different conditions. She tested positive for celiac (genetically) within the last 6-9 months. I won't go into all the 'innings', but POTS, months of nausea, devastating fatigue, damaged ligaments (negative for EDS), and on and on. She was researching MCAS and was surprised that I had been tracking that as one of the LC conversations. Past that, I don't have much knowledge re. MCAS. 2 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted March 23 Share Posted March 23 Adding—there’s no evidence for a mcas diet as everyone reacts differently. For some people being GFCF helps, for others, low histamine. Where you already have a limited diet—and odds are probably high that you’ve got the genetic KIT alteration…seriously, go slow and go single ingredient but dont spend a lot of energy fretting about food. It wasnt red meat that set off your anaphylaxsis, so I’d not necessarily avoid it. rice, sweet potato, regular potato—pick some nutritious starches that will give you some calories and then add back proteins and fats. The advice I was given was to do a week 1 list of four foods, a new list for week 2 with no repetitions of week 1, and keep building back… 3 Quote Link to comment Share on other sites More sharing options...
Halftime Hope Posted March 23 Share Posted March 23 3 hours ago, Spryte said: So, for anyone with experience with this: what on earth should I eat right now? Thinking low histamine? Single ingredient foods? Every ingredient in the food that started all this is in my normal rotation, but obviously I’m avoiding those. I don’t want to have another epipen moment, but I’m a bit scared of food. I have lost 7 lbs since Monday (I’m short, and it shows, which isn’t all bad but not a good way to lose weight!). I’m finally hungry. I had never even heard of idiopathic anaphylaxis, and I’m not up to researching a ton. @Spryte, I just wanted to pop back in and say I'm sorry that went off on a tangent a bit. I can very much relate to struggling to know what to eat when one is ill, when food feels dangerous. Thinking of you and wishing you the best, as well as praying for you and yours. Quote Link to comment Share on other sites More sharing options...
Spryte Posted March 23 Author Share Posted March 23 27 minutes ago, Halftime Hope said: @Spryte, I just wanted to pop back in and say I'm sorry that went off on a tangent a bit. I can very much relate to struggling to know what to eat when one is ill, when food feels dangerous. Thinking of you and wishing you the best, as well as praying for you and yours. I thought it was an interesting, so please — no worries. I didn’t realize there was a LC connection to MCAS. When I feel more put together, I would love to compare notes more. I’m so glad she’s doing better, and hope it stays that way. These overlapping mystery illnesses are so frustrating, and hard to handle. Just hearing that there are others in the same place is good. I have a celiac diagnosis as well, among other things. We probably have more in common, too. I sure wish neither of us had to walk that path. Quote Link to comment Share on other sites More sharing options...
mom31257 Posted March 24 Share Posted March 24 I have no experience so no advice to give, but I'm really sorry you are dealing with this! I pray you can get a solution that will help you feel confident in what you can eat! 1 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted March 24 Share Posted March 24 (edited) On 3/20/2024 at 3:31 PM, KungFuPanda said: Good grief! I’m glad your kids were allergy alert and talking sense. Just today a coworker told us that her son called from college and said something like “do you know that some people can eat bananas without them tingling?” Ummmmmmm . . . after further interrogation she decided her son has been allergic to bananas his whole life and never mentioned it til college!!! Same thing happened to my son. I think the tingling got worse and so he did eventually mentioned it. I was so surprised because he had never been allergic to anything. Edited April 16 by Scarlett Quote Link to comment Share on other sites More sharing options...
Milanaaa Posted April 15 Share Posted April 15 (edited) Avocado, I ate so much of it that I developed an allergy. That's what the doctor said. However, later it turned out not to be so, and there was no allergy. After that time I was very scared and decided not to limit myself in anything and try Coconut Oil Break read more here https://betterme.world/articles/does-coconut-oil-break-a-fast/ and also to restore immunity and balance my physical condition so that such cases do not happen again. Edited April 29 by Milanaaa Quote Link to comment Share on other sites More sharing options...
Spryte Posted April 16 Author Share Posted April 16 3 hours ago, Milanaaa said: Avocado, I ate so much of it that I developed an allergy. That's what the doctor said. However, later it turned out not to be so, and there was no allergy. Interesting! Avocado is high histamine. Maybe your allergy cup was full. Quote Link to comment Share on other sites More sharing options...
Milanaaa Posted April 16 Share Posted April 16 8 hours ago, Spryte said: Interesting! Avocado is high histamine. Maybe your allergy cup was full. It's true, I was in the same shock, I'm glad that everything turned out Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted April 16 Share Posted April 16 How’s it going, @Spryte? 2 Quote Link to comment Share on other sites More sharing options...
Spryte Posted April 17 Author Share Posted April 17 On 4/16/2024 at 7:35 AM, Harriet Vane said: How’s it going, @Spryte? Thanks for checking on me. I’m a lot better. Dragging, and not feeling 100%, but haven’t had more scary episodes. Have been seeing the specialist every two weeks, and am figuring out what I can/can’t eat. It’s been quite an experience! 6 1 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.