A guest post from Kayla…
It’s my turn to share health news. I’m ok. I’m at the start of a long journey, but honestly, I feel good in a lot of ways. This is going to be a long post. And if it feels really twisty and turny, it’s feeling about right.
I always have been described as a little delicate. Not sickly, necessarily, but always overly sensitive and a little uncomfortable. It’s hard to pinpoint when I progressed from being delicate to being sick. It’s been a rough few years. Losing Dad, and his illness before, was awful. That time overlapped with my husband and I trying to conceive. In fact, I had surgery for endometriosis on the same day Dad had his lung surgery. From there we lost my dear friend-cousin Jody. I had my son in January 2020.
I eventually noticed that I never got better after we started trying to conceive back in 2018. I never quit feeling tired after my first trimester of pregnancy. The carpal tunnel that started in pregnancy lingered on and was joined by joint pain and unrelenting fatigue. I suddenly couldn’t remember the last time I exercised or watched a TV series with Spencer or cooked a great meal.
This all came to a head earlier this month, but I didn’t know it at the time. I noticed a “bug bite†and mentioned to Spencer how strange it was that I had them on both arms and that they were in clusters. They were gone by the next morning.
The next day my leg blew up with what I now understand were hives. I was in such pain and so concerned that I considered going to the emergency room. My sisters told me to try Benadryl first and the welts suddenly disappeared.
From there I had hives every day. They started small and through the day became completely painful. I would hold off on Benadryl until I made it through my work day, then take Benadryl, and they’d disappear.
Meanwhile, every allergy I ever… had acted up. I couldn’t wear jewelry, my carpal tunnel became unbearable, I felt dizzy when I stood up, and I didn’t have the energy to sit upright for a whole work day. I could only wear cotton clothing, nothing tight, and no tags. I even reacted to toilet paper.
A week after the hives first appeared I had an anaphylactic reaction to my supper and went to the ER. I was put on a high dose of Prednisone. The steroids worked at relieving the hives but I was completely wired and had every side effect a person could expect on them. An appointment was made with allergy and as I tapered off the steroids I couldn’t take antihistamines because of my upcoming testing. It was a truly miserable week.
When I was finally able to see the specialist, he used the back of his pen to lightly draw a shape on my arm and back. Sure enough, it became welts after a few minutes. He explained that indicated dermatographism. This is almost always a sign of Mast Cell Activation Syndrome.
I was also skin scratch tested and found to have allergies to some trees, weeds, and grasses, as well as mold.
MCAS is difficult to test for because mast cell levels change so quickly. The test they ran came back negative, but now I have a standing order to have blood drawn between 90 minutes and four hours after my next flare.
Obviously, then, the main medical concern is anaphylaxis again which is especially scary because anything can set it off. Mast cells are not necessarily “bad guys.†They fight off everything from germs like they are supposed to, but also everything else that causes stress from fragrances in the air to hot weather to strobe lights. The cells release histamine but there is such a buildup of histamine in my body that I have responded with hives and, eventually, anaphylaxis.
I feel like a ticking time bomb. Which is not helpful on the stress reduction front.
The good news is the medical interventions are working. I am on a high dose of antihistamines and have not had hives since I started them. The fatigue is still terrible but I don’t know if that’s related to the medication or the flare.
It can take a long time to recover from a flare. In addition to the medication, I will be working on other ways to calm my body down. I need to work on a low-histamine diet which unfortunately rules out all fermented and yeast foods, including wine and beer. I have supplements and probiotics to try. I need to work on reducing stress and other triggers.
It’s a pretty big bummer. We are farm-sitting this week and I would have loved to work from my laptop on the porch swing but I can’t do the outdoor allergens. I’d love to swim in the endless pool but I can’t do the chemicals. I am down to bare-bones hygiene products (no makeup or waxing for now) and replaced what I have with hypoallergenic versions. When we get home I’ll be boxing up our cleaning products.
Physically I feel pretty awful but mentally I feel pretty optimistic. I’m so grateful to have the ability to work from home and control my environment. There’s not a chance I could handle teaching right now. I’m grateful to afford the overhaul in hygiene and cleaning products. I’m grateful for my access to healthcare. It also feels good to have an answer for my plethora of quirky symptoms, even if it’s not a very convenient one.
Like I said to my family, it’s going to be a long haul to get healthy, and even so, in the future, I will have to be aware of MCAS triggers. I want to still be invited but I don’t want people to go out of their way to accommodate me. I will probably bring my own food and toiletries. I will probably wear a mask.
If you made it this far, thanks for reading my novel! I wanted to get it all down in one place because it all feels so crazy. Mom’s readers have also been so resourceful in the past, so I would love any advice or guidance you have.
I am so sorry to hear about all your health problems! Hoping you find all the answers for a more comfortable life.
Wow,seems like a lot to deal with! But at least you know what to do now and with your wonderful family I’m sure you will have all the support you need! I feel like I know all of your family,even though we’ve never met.i hope you feel better soon!
Kayla,
As I was reading your post it started to sound like a woman’s blog that I read. I don’t know how I originally found her…she used to live in D.C. and now in Maine and used to be a college professor. She is an older woman in her seventies. As a side note, she is a rescue pup owner and a quilter.
Her blog is LouisaEnright.com. Her blog started in 2010 but I searched the archives with “mast cell activation syndrome” and found perhaps her first posting about it in 2017. She often shows/writes about her meals and how they are prepared.
I would give her blog a look and bet you will find some useful information. Best wishes for improved health.
I would
Oh no!!! I have terrible allergies and they are no fun!!! I have had them my whole life and they are getting worse. I no longer can eat fresh fruit or veggies picked out of the garden because they are covered in pollen. If I do it’s several days of diarrhea for me. My other new development is sunflower seeds give me the worst stomach cramps and diarrhea. I also have many other food and skin allergies to pollen on my skin. I do my best to stay off of drugs as much as possible using cool baths and oatmeal but I still use so may drugs!!! Sometimes I have no idea what causes them and always carry an Epipen for the just incase factor. knowing what casues them and avoiding those things canbe a life saver. Good Luck on your journey and remeber you can develop new allergies at any point in your life.
Thank you! This is a helpful resource!
I don’t know what happened to the rest of my comment:
I would give her blog some consideration and bet you will find some useful information. Best wished for improved health.
It sounds like you are having a basic understanding of what’s going on. I hope you won’t have any big flares in the future. You have a wonderful family who will be great support. Hugs,
Praying they will find the right combination that will help you. My son was born without antibodies to fight infections, allergic to everything. He suffered incredibly until just past 3 yrs old. Those yrs were very difficult. We put him on vitamins and slowly he started to overcome those allergies. I don’t know if this is something that might help you. But it did help me also with my MS. Maybe your doctor can consider that for you. Praying for wisdom for your doctor and peace for your soul.
So sorry about your health issues. It’s good that they figured out fairly quickly what was happening. I will be praying for you. Take care of yourself.
Oh dear, what a challenging balancing act you are in! Hoping you can navigate everything and get to a better place. <3
Shaklee cleaning products might be worth a try. I don't sell them, but use 2 products: Basic H concentrated cleaner and Basic G (germ killer).
Also, are you aware of Azure Standard food co-op? They are based in the northwest, but deliver over a majority of the country on a monthly basis. They have beauty and cleaning supplies as well as food, bulk foods, produce (organic!) frozen foods and meat, and a lot of other organic things at good prices. They have been developing their own line of laundry and cleaning supplies, too. Their "Spray Clean Supreme Household Multi Surface cleaner" is one thing I use. The info says:
*Powerful plant-based formula that works!
*Earth-friendly (free from SLS, SLES, Laureth-7, Butyl, phosphates, chlorine, ammonia, glycol ether,
brighteners, or EDTA)
*No dyes or fragrances
I cleaned the really grungy carpet and upholstery inside a car and did not react at all, ether breathing-wise or skin-wise.
Go to azurestandard.com, and at the bottom of the page click on "Find a Drop", and a map will pop up with locations. Under "Join In" there is also a link – How it All Works – to explain things.
Commenting on food, I have not researched this myself, but I was told years ago that pork has histamines in the meat. I do eat some occasionally, but I feel it afterward. (I have IBS).
I hope some of this info may help.
I will pray for you to get a good handle on how to proceed, and for your good health, mental well-being, and peace.
My daughter uses Azure Standard and loves their products!!! You can be comfortable using their products! Prayers for you and your family on this health journey!!
I agree! Azure is such a great resource! We get a drop here in town once a month.
Hi Kayla, really sorry you’re having such a tough time. Glad you’ve finally got an answer, though. At least now you know what you’re dealing with and can put actions in place. As far as cleaning products go, I can very highly recommend the Nancy Birtwistle book ‘Clean & Green’. I’ve been using her recipes for cleaning products for over a year and they actually work, as well as being kind to us and the environment. Have a look on Instagram @nancy.birtwistle
I hope the medications can help keep things under control for you. Take care x
Thanks! I will check that out.
I went through this for 5 years. Definately a case where you fill your ‘bucket” up with chemicals that your body is struggling to process. They can even be naturally occurring chemicals in food. So you might think you are eating healthy avoiding colours and numbers but foods contain natural Salicylates, Amines and Glutamates. Unfortunately Doctors aren’t knowledgeable in diet related, but if you find a good Dietician to help you with am elimination diet, then you can work out triggers. I still take antihistamine mist days, carry an epic pen, and I manage to eat most foods, moderately.
I can let you know of a good food reference guide if you like. The Royal Prince Alfred Hospital ( Australia) is the leaders in the field of food sensitivity.
I will pray for you and your family. You have an answer and can now move forward slowly and eventually mend your body.
Hi Kayla, I’m in the same boat I cannot use any soap no matter how green it is. I wash everything including myself with vinegar. That may not work for you do to your other allergies. Praying for you to be able to cope and get this under control so that you can enjoy living and loving your family.
Kayla sorry to hear about your struggles but you now know what your dealing with. Looks like your getting a lot of comments that might be worth checking into to. Readers are the best and you can check out what works best for you. Sometimes there is something that just might work for you.
You have great family support and thanks for sharing. Hang in there.
What an unusual journey you are on, I’ve never heard of dermographism, I had to look it up. I imagine it’s nice to have a name for what has been happening to your body and the medical personnel to help you guide through this. I pray you continue to feel better, stronger and more like you used to be. Thank you for sharing your story.
Everyone has pretty much said what I would have so I will just say I’ll be praying for you.
Love and prayers
Oh wow. So sorry to hear this. I can imagine how life-changing this is! Have you had any autoimmune disease testing?
Ah, Kayla, those first two paragraphs had me wondering, mast cell? I have a dear friend who has coped with this for 12 years. In early August this year she was at urgent care four times in one week for anaphylaxis. She was told to try Claritin. That is allowing her to eat. She recently told me she feels like a new woman. She was also told this could be long term results from an undiagnosed lyme disease infection.
I’m sorry you’re having to deal with this, but there is hope! I will pray for your healing and courage on this journey.
I’m a Norwex consultant, Norwex is cleaning with our proprietary microfiber and just water, reducing use if harmful chemicals. I wonder if this might work for you? If you want to look at this further, contact me through my website and I can connect you to a consultant near you. http://www.darlenewalker.norwex.biz
I can relate. I use Norwex products for cleaning. I don’t sell it.
I use Lume deodorant. I get the Lume through Amazon.
Check with Dysautonomia International for other help.
I am just at the beginning of learning myself.
I am so sorry Kayla to hear of this illness. I’ve never heard of it before but I certainly can understand it. I was around six or seven little children 13 years ago and picked up a bug from them. I have yet to get rid of it. Just reading some of the comments has me interested, I did not know pork had histamines in it. I think I need to read more about what food does to you, I mean general regular food. I do hope that you feel better soon because I certainly know what it’s like to have the fatigue every day. Hang in there girl!
At one time your mom said you may have long COVID? Can this be diagnosed?
I did have long covid. MCAS can be triggered by that.
I can only imagine what you are going through. It sounds pretty scary and hard to function with – had never heard of it. So thankful that you are getting good care, can work from home, and your family is around to support you whenever it is needed – they are the best! You and your family will be in my prayers.
Hang in there. It will get better.
Hi Kayla, I’m so sorry you are going through all of this. I am grateful however, that they diagnosed it early. It took them years to figure out my autoimmune disorder years ago. On the cleaning front, you might try castile soap. You can get it in unscented. I use it for everything and it is chemical free. Bronner’s website has a whole list of ways to use it. I have reduced my cleaning products down to castile soap, vinegar, baking soda, and rubbing alcohol. (Rubbing alcohol is for cleaning windows).
Praying for complete recovery.
Wow! Allergic reactions are the pits. I had severe hives in my thighs a few years ago….blood work….hashimoto. Since then, I’ve been on a natural thyroid replacement med and it has helped but since then I am also gluten free. I have other allergies to go along with that to the nightshade foods, apples, tape, etc. And like you say, to recover from an allergic reaction takes a long time. You have my compassion on this journey. Hopefully in time you will be able to get on top of it and be able to feel good. Thoughts and prayers and love.
So sorry Kayla but glad you are now getting answers and possible solutions. One of my granddaughters was finally diagnosed with this. It started in infancy, different body parts would balloon up and turn beet red. We were reluctant to take her places as she would take her clothes off quicker than you could blink because they “hurt”! She was potty trained very early as putting diapers on her made her cry. She is now 13 , gorgeous, good student ,athlete and is learning to listen to her symptoms. She takes enough antihistamines to knock out 3 grown men! Hang in there, I know there is a group out there that might give you some help.
Kayla,Wow! We love your family and wish only the very best for each of you! My only advice is to look for every expert in the field, one of them has to have an answer! Finding the ‘right’ answer is a long road, and I sure hope you get the help and answer you need! Sending you prayers and hugs! You are one smart cookie, please keep up the fight!
So sorry Kayla to hear about this, but it sounds like you are doing all the right things. My sister made many changes to her diet and lifestyle in general after being diagnosed with chronic Lyme disease and fibromyalgia. It’s hard but you will feel better for it. God bless you and your family whom I know love you and support you.
I am so sorry Kayla! Prayers for more answers and for healing. Readers have given some great suggestions.
And ((hugs)) to you Jo – it’s hard when our children are sick.
I am assuming that you need to carry epinephrine with you at all times. As a mother of a child with a severe life-threatening tree nut allergy (airborne and ingested) I have found that my child prefers to carry Auvi-Q. Please check out their website as we have found that it is cheaper than other epinephrine options on the market. When my child’s allergy was first identified I had to read every label (food, soap, hair shampoo, etc.). I have found over the years that even though an item was safe the last time you bought it the manufacturing process might have changed so this is a continual process. Best of luck on your journey. I will keep you in my prayers.
Kayla – thanks for sharing your story! I learned a lot! I had no idea anything like this existed! I read many of the comments and thought that there’s so much support out there! It’s so sad that you’ve suffered for so long! I will keep you in my prayers and I hope you find the answers that you need for a recovery and finding your new way to live!
My daughter has been dealing with Mast Cell Activation Syndrome for several years. I am glad you have a doctor that understands what is going on and is helping you. It is such a rare and hideous illness and many doctors have no clue how to diagnose or treat MCAS. Some have never heard of it.
MCAS has many of the same symptoms as long haul Covid and we are hopeful that the research that is being done for Covid will be helpful in dealing with MCAS.
Wishing you the best ……
Vicki
Oh, Kayla, what a cross to bear! I’ve got a number of allergies. Recently, they seem to be getting worse, with a few new ones popping up. Yours are over the top! Best of luck with your journey to itch and pain free living.
Kayla, are you sure it’s not environmental? New carpeting, painting, any exposure to fumes that could be setting it off? I hope you have not, nor will get any COVID vaccinations.
I’m sorry you’re dealing with such an overwhelming diagnosis. Praying your body and mind find peace and resolution.
For decades, I have cleaned only with baking soda and vinegar. Here is a short list: https://www.today.com/home/how-clean-your-home-using-only-2-ingredients-t16236
For toilet: sprinkle 1/4c baking soda in the bowl and then 1 cup vinegar-let sit 15 minutes and then use brush to clean thoroughly.
I use organic Tea Tree Oil personal care products: Shikai shampoo, Jason’s Body wash, BWC face wash and then Burt’s Bees moisturizer and eye cream. Liquid Hand Soap: EO Tea Tree Peppermint
Laundry: Ecos no-fragrance liquid (no fabric softeners here)
Dishes: Seventh Generation liquid for handwash and Tablets for dishes
If you can’t find these locally, most are available at Vitacost.com
Thank you for sharing this! I bought some non-toxic cleaners through Grove but I’m all about a thriftier option!
You’ve had such a difficult experience for such a long time! Getting answers to what has, up to now, been a mystery can be helpful. I was so relieved when I was diagnosed with MS because then I knew why I was having all these bizarre symptoms, and I also felt I had a direction for dealing with it. I hope that you not only finally have a correct diagnosis, but that you can feel somewhat empowered by that knowledge and a sense of what to do about it.
I know you have a wonderful, supportive family, and that is a miracle in itself. I join all those who are praying for relief and healing.
Thank you for sharing your story with us. I have no doubt that your openness will help someone else.
Consider being tested for Alpha Gal Syndrome. It’s a special blood test. It makes you allergic to mammal meats and products. I got it, it it activated MAST and histamine intolerance in me. Very similar symptoms to what you describe. There is an acupuncture treatment that helped me, SAAT. Best wishes,
Wow, thank you for this post. My daughter has dermatographism as well as a history of strange skin-focused allergic reactions. We long suspected the chemicals used to clean the dance studio where she spent hours and hours each week as an irritant. When we went to the allergist they just said to take an allergy med and sent us on our way. After a horrible reaction to allergy meds we didn’t continue down that path. This gives us something new to look into. And might also explain her lifelong resistance to trying new foods or varying her diet. I’ve always suspected there was something more about her health that we needed to uncover and this gives me a direction to pursue. Good luck to you!
Kayla, Sending prayers for strength and healing. Take care!
I knew when I started reading you have mast cell activation syndrome. I too was always sensitive to many foods, smells and visual cues. I was diagnosed a few years ago, after I went to a few doctors. The cluster of hives would travel from one part of my body to another. When it happened, I felt I was on a magic carpet ride floating, looking down at myself. They itched so I couldn’t sleep. We had moved to another city (stress) and this city had Aspens and Scottish Thistle (new pollen). I overloaded. I had never heard of MCAS, and thought I was losing it. I researched for hours. Allergy doctor put me on H1, H2, and famotidine for my digestive system to fight the histamines. They lessened the itching, but it was still bad. In my research I saw that in Europe they prescribed an Asthma medicine. So I asked the doctor why couldn’t we add that. Montelukast was the trick that changed the tide for me. Three years later, I take all of the above (I was allergic to all NSAIDs so didn’t add any). I have not had one episode. The allergy doctor wanted me to get the omalizumab shot, and I wouldn’t have had to take the other meds. But Medicare only paid $200 and I would have to pay the other $800 a month. Oh my. We don’t have that kind of money. You will overcome sweet girl. God Bless.
Wow.
Prayers for quick and complete healing.
Kayla, Sorry to hear about your diagnosis. There has been a lot of helpful knowledge from the blog readers
that have responded. So glad for that. We are one family helping each other. I have interstitial cystitis so I
also have a very strict diet and no chemicals etc also. I use a product called Melaleuca. The laundry detergent, Mela Power, has no chlorine bleach, formaldehyde, phthalates, parabens, and is unscented. They have other options but this is the one that is safer. You have a very supportive family and they are there to
help you. I hope there is something that you can fine to help calm this down for you. My prayers will be
with you.
So sorry to hear that you have not been well. My daughter had allergy issues begin a few years ago, too, in her 20s. She developed an allergy to nickel, which is in a lot of food (including coffee). She first had a rash from that little metal circle on jeans. She can’t wear any cheap jewelry. There’s lots of info on the Internet about nickel. Have you had allergy testing done? On a positive note, my allergies gave decreased as I age.
Have you had your hemoglobin checked? If that’s low, it could be why your tired.
For the carpal tunnel, make an appointment with a hand surgeon. I had one shot of cortisone that was all I needed.
Sending prayers your way, Kayla.
For those of us allergic to nickel, there is a website with jewelry – earrings, necklaces, chains (for the pendants you already have), hooks and other findings to replace the ones on your favorite earrings (that you can’t wear because of the reation you have), etc. It is Simply Whispers.com
I am sure there are other places, too.
I found out that you may have gold stud earrings from the jeweler, but sometimes there is still a problem. It is the place where the earring back and post are joined. Sometimes the solder (or whatever is used) contains nickel.
My husband has some of the problems you shared. One of the big ones for him is scented products. That means that he cannot be around people who use highly scented products, he cannot be in a house that uses air fresheners or the clothes they wear that has been dried with scented (or unscented) dryer sheets or fabric softeners. It just continues to get worse over time. He can’t go to church or a crowded movie theater or visit family at their house. If we are staying with them we have to ask them to wash sheets and towels with unscented products. Needless to say we don’t go out often and have to ask people to not use any scented personal care (deodorant) when they come over. You are in my prayers.
My neighbors grandson is allergic to the world. He is 3 yr old and can’t eat anything from the dairy aisle. She can be really careful with food and he start the projectile vomiting for hours.
Good luck and just hang in there.
Kayla, I don’t have anything to add to what has already been discussed. I will keep you in my thoughts and prayers! Hugs!
I’m wondering if a laundrymasher would help you with your laundry washing. It’s a device that contains nano silver- infused ceramic beads that kill microorganisms and nasty odors. No detergent is needed. Not only is it easier on your clothes, it contains no scent. used with it and it lasts for 200 washings. Look it up on internet at laundrymasher.com. Good luck! I pray that God wraps His living arms around you to keep you safe.
After having hives for a while and trying the anti-histamine diet, my doctor suggested the Whole 30 program – it is a strict elimination diet with reintroduction of food groups to determine what sets you off. It worked for me and I am feeling better. There is a website for Whole 30. I recommend that you keep a journal, listing what you ate and drank and how you feel during the day. When you test foods, make sure you eat the food over several days. I could eat some things for one meal, but the second meal resulted in a reaction. Some foods are now a once a month treats.
A lot of my problems were the additives in prepped foods. Reading food labels is essential. There are some food product lines that have a Whole 30 approval label which make it easier to find foods to eat. Some restaurants are even identifying meals that are Whole 30, paleo,or Keto friendly. And, don’t forget that leftovers are bad since even an extra day in the refrig increases histamine. So, get a food saver to vacuum seal and freeze the leftovers.
I also bought several small air purifiers with HEPA filters and that helped with mold, pollen and so on. One machine is by my front door/living room, so any allergens are quickly filtered and not carried around the house. The others are in my bedroom and kitchen. During high pollen/mold season, I use a face mask outside as well as changing clothes and taking a quick shower to clean your hair.
Make sure you have your vitamin levels checked often. I have to take high doses of Vitamin D and Zn to maintain the basic required levels for good health. Zinc is important for skin and immune systems. But, my blood levels are checked every six months to make sure I am not overdoing it.
Good luck in your journey – you will feel better once the triggers are determined.
WOW!!! I never knew allergies/reactions to our environment is so common. Kayla, you’ve got lots of advice and resources from people on here that you can weed through as you travel this journey. I’ll keep you in my prayers. Please blog about your experiences once in a while as you can see Jo’s family has become the blog readers adopted family. Hugs to you and your family because this is their journey too.
Prayers for you dealing with this health condition. I have no particular advice to add.
My heart goes out to you and pray that you and your medical team are able to resolve or at least find some relief for you. I also have a ton of allergies and have to be diligent about what I eat and products that I use. Thankfully there are so many more options available now than just a few years ago.
Are you anywhere near New Pioneer Co-op in Cedar Rapids or Iowa City? You can find organic products there.
Dear Kayla, I worked as an ARNP. We had a patient that had multiple sclerosis. She used a wheelchair and sometimes was well enough to use two canes. She found out about “The Wahls Protocol” by Dr. Terry Wahls at the University of Iowa. Dr. Wahls is a clinical professor of medicine. Interestingly, Dr. Wahls has MS and was using a wheelchair, worrying about her future in teaching. But, she tried some different things on herself and is now walking without any aids. My patient always walks with just one cane now, sometimes needing no cane at all. Dr. Wahls uses this protocol to treat all chronic autoimmune condition using paleo principles. She also uses supplements. It’s a difficult diet at first, takes some getting used too. But, you sound as if you’d do most anything to feel better. You could see if you could get into her research study or purchase her book (Amazon) . It’s pretty miraculous. I’ll be praying.
Hi Kayla – I wish I had some advice for you – I’ve never heard of this disease before and am totally amazed at how many of your mom’s readers have experience with MCAS. What a small world. It seems like the other commenters have given you some options to research. I’ll add you to my prayer list and I hope that you will find a way to live with this disease. Sending love and prayers for better health.