I am 58 and started with hives about 50 years ago

I went into true remission

I promised an update this morning. Sorry for the long post. For newbies, I’ll start with a little history. I’m 58 and started with hives about 50 years ago. Through childhood and teen years they were controlled with atarax (hydroxyzine) and occasionally prednisone. Always worse when sick. Then, sometime during college to later 20s I went into true remission. After that when they returned they were no longer easily controlled. I have done all the American antihistamines, heavy and long term Prednisone, cyclosporine, but never xolair. Sometime in my late 40s until last April I had my longest hive free time. For most of those years I was taking 1 randitine and all of those years I stayed on one Fexofenodine. You can totally imagine my disappointment when they returned after such a long time. This time I took a different approach and combined conventional and Natural medicine. I went to a Naturopath. I did do a short 10 day bout of Prednisone to get them under control. The photo below is what I currently take. I was still having hives and on maximum doses until December. Then I did a food sensitivity test (not allergy). Since then I have eliminated Almonds, including Almond milk, natural Vanilla flavor, lettuce, and limit eggs to once a week except in baked goods. I’m hive free and have been able to go down to one Pepcid and 2 Fexofenodine a day. I have an occasional itchy day where I might add the 3rd Fexofenodine. If you have additional questions please don’t hesitate to ask. I have been a doubting Thomas about elimination diets in the past. I did not have to eliminate everything I tested for, I looked at what made sense. Please don’t give up!

Discussion

Lori Nicholson
How do they do the food sensitivities test and which doc does them
Glad you’re better

Beth Carrier Fye
Lori Nicholson I did EverlyWell on my own from home.

Lori Nicholson
Beth Carrier Fye thanks

Beth Carrier Fye
Lori Nicholson I was a skeptic, and shocked by the results.

Kristen Antis
I can’t read what some of these are. Also did you buy the test or get from doctor

Beth Carrier Fye
Kristen Antis I did EverlyWell from home. Which ones can’t you see?

Kristen Antis
Beth Carrier Fye I see them now I just zoomed in thank you!

Beth Carrier Fye
Kristen Antis some supplements I started for other reasons, but they could be helping too. The Aloe and Anetto one. The rest were specifically for hives.

Marissa SN
Is the food sensitivity test a blood test or something easier to do? My 6 year old is experiencing this…

Beth Carrier Fye
It was a finger prick.

Lori Nicholson
Beth Carrier Fye do you send it off
What timeline are we looking at

Beth Carrier Fye
Lori Nicholson I had results within a week. My list of sensitivities were quite long. I narrowed down what to try first by what made sense.

Amy Raelynn
Do you know if it’s ok to be on antihistamines and xolair for accuracy with this test?

Beth Carrier Fye
Amy Raelynn I never did xolair but was on 4 Fexofenodine when I did it

Kimberley Quirk
Ahhh quercetin and vitamin D both mast cell stabilizers. FYI I have chronic hives from MCAS that was triggered by infections

Debbie St. Louis
Kimberley Quirk hey, may I ask how did you find out your hives came from MCAS what kind of test did you

Kristen Antis
Kimberley Quirk yes and how do you heal? Get rid of infection?

Kimberley Quirk
Kristen Antis so I found quite the infection collection – undiagnosed Lyme, EBV, 2 kinds of pneumonia, 3 kinds of HPV, and most recently mycotoxins from toxic mold exposure. Need to work with functional doctor to get to root cause. I’m working on all of these with doctors. It takes time

Debbie St. Louis
Kimberley Quirk may I ask what kind of Doctor you seeing. Thanks for the info

Kimberley Quirk
Debbie St. Louis I have a team of docs – conventional endocrinologist, neurologist, and immunologist. And then a functional MD and a MCAS Naturopathic doc (who is the most knowledgeable of all and doing this bc she’s had it all herself).

Robin Marie Puckett
Thanks for this post. It makes a great deal of sense to me. I’d not heard of at-home food sensitivity tests, but will definitely do some research. Glad you’re doing better.

Beth Carrier Fye
Robin Marie Puckett I was a skeptic, but at my wits end. Some good days, some bad and it didn’t make sense. I’m not good at extreme diets, so this was a good alternative to a drastic change. Vanilla, lettuce…I feel sure I never would have done that at on my own. I was drinking an vanilla almond milk smoothie and some days my flavor for my smoothie was vanilla. Eating more eggs and nuts to cut carbs and more salads. My attempt to healthier for me lifestyle was backfiring. Amazingly, milk, cheese, and other dairy was on my safe list. I still have my smoothie every morning as it part of a nutritional plan I’m on. I just don’t do vanilla or use almond milk.

Robin Marie Puckett
Beth Carrier Fye Awesome! The idea of doing a food elimination diet has been completely overwhelming…just can’t do it. The prospect of narrowing it down first seems much more palatable.

Frankie Sinclair
Beth Carrier Fye I wonder if you were sensitive because you were eating so much more of those foods than others? It might be useful to do the test again in 6 months and see if the results are different?

Beth Carrier Fye
Frankie Sinclair I think it is possible.

Sarah Koehl
I am going to have a blood test next week for food sensitivity and a few other things (thyroid and immune compromised stuff) . I was told I could still take my antihistamines before the blood draw but not predinsione. I already do a low histamine diet so I know what makes my worst flares but even on low histamine I still have hives every day so I need some answers!

Beth Carrier Fye
Sarah Koehl wish you the best. I was diagnosed long ago with Thyroid issues and take medicine for that also.

Jen Detroyer Bowden
Good for you for digging deeper and so happy to hear you found relief! I’m a true believer that your gut health is a huge part of CIU!! That is what helped me get into remission too!

Elizabeth Weir Atkinson
Jen Detroyer Bowden so glad you are in remission. How long has it been and how did you improve your gut health?

Elizabeth Weir Atkinson
Thank you for sharing your experience. Was there a reason you never tried xolair? I am thinking of doing a food sensitivity test. Is it okay to be on xolair? How soon did you feel results from your new diet?

Beth Carrier Fye
Elizabeth Weir Atkinson it was just becoming available during my last episode ~10 years ago and difficult to get approval. Older and wiser this episode and now living with long term side effects of previous prednisone and cyclosporin. I wanted to try more natural approach.

Frankie Sinclair
Thanks for your post Beth!

Christy Garris Patterson
Beth, did you do the comprehensive or the basic test? I have been researching this some. My dermatologist doesn’t believe that it has anything to do with that but I don’t believe it so I think there is something to the healthy gut. She says that food allergies are hard to determine. I’m not so sure about that. I’ve been looking at toxic liver. Just brainstorming of what could be causing this!! I only have it every 6 months and not in the summer. As a teacher that is when I am able to exercise regularly. I am going to keep searching until I find out why!! 🙂 Thanks for this post… I’m going to do this.

Beth Carrier Fye
Christy Garris Patterson I did the comprehensive. I had 4 high and 17 moderate, and a whole lot of mild. I only eliminated ones I could correlate to eating habits. I have come to believe there is not one factor to our hives or for that matter many chronic illnesses. I never changed my diet previously but have been hive free. I think there is an overload of some sensitivity that sets off an episode. That is what makes it so difficult to treat.

Christy Garris Patterson
Beth Carrier Fye thanks! It is so very frustrating. I agree. Stress is one of my triggers but that doesnt make total sense because it is not more than usual. There is more, seems like the “perfect storm” where several factors come together at once. Just crazy I am 45 years old and have never had anything like this in my life except sensitive skin to soaps and detergents. I’m curious if it has something to do with hormones also. My doctor doesnt think so but I dont rule it out. I am going to try this and see what my results are. I appreciate the info!

Beth Carrier Fye
Christy Garris Patterson when I was young mine was worse when menstruating. Mine have never been related to stress, my most stressful times of my life have been hive free times. Of course the hives themselves cause enormous stress. I had our only son during one of my periods of true remissions, then they came back with a vengeance about 4 years later. In 2015 I had double knee replacements, a pacemaker and total hysterectomy with no hives. I get a dental crown in 2019 and they start again. SMH