Chronic Idiopathic Urticaria (Hives with unknown cause)

[NCBoilermaker]

Hello,

 

I just recently finished my first whole 30 (finished on December 9th).  I started the whole 30 for two reasons:

1. Slay the sugar dragon and develop a more healthy relationship with food.
2. See what it could do to address a very new issue, Hives.

For some quick background, I had been overweight in the past (peaked at 270, stay at 175-185 mostly now), but started doing endurance events about 13 years ago, and lost a considerable amount of weight.  For the most part, I've kept it off for all of those years.  My downfall has always been sugar - no brakes for me when eating sugar......it's bad!

 

To add to this, out of the blue, I started in mid-October getting hives. I've never had an allergy issue with anything (Hives, Pollen, etc - never even a runny nose in the spring!)  I couldn't find a trigger, but thought it would just go away.  After about two weeks, I decided I would try out Whole30 (was familiar with others who have done it) and slay the sugar dragon AND see if it gave relief to the hives.  I loved the program, I felt great, and enjoyed the new foods I was eating.  However, did not see improvement with the hives.  

 

I've since been to the doctor and allergist on a few occasions, and tested for every allergy and food sensitivity there was.  They found nothing.  I have also had full blood panels done to check for Autoimmune disease or other issues.  Nothing, all came back perfectly normal.  In terms of taming the hives, I've been on multiple prescription "cocktails", with no luck or relief.  In my appointment this week, they said they wanted to submit me for approval for Xolair injections once or twice per month.

 

So, I come to the forum for advice and help.  I'm not a fan of medicating to make a symptom go away without knowing the cause.  I know, this is NOT uncommon (to not determine the cause of the hives, and eventually they go away).  I have contemplated the following:

1. Do another Whole30 - Maybe I didn't give them enough time to go away.
2. Do a Whole30 with the low histamine or AI protocol (this does not look fun, and all of my tests indicate there is no Autoimmune issue).
3. Go ahead and go on the Xolair and see if I can get relief (and would still focus on a Whole9/Paleo lifestyle 90% of the time).

One admission of guilt that could sway opinion - I did have a bad sugar day after my Whole 30 the other day.  I know - BAD!  However, the hives and itching came out with force.  I have them every day, but seemed especially bad after this.  

 

So, thoughts?  I know this was long, but wanted to give as much information as possible.

 

Thanks!

[Tom Denham]

I went to the emergency room with hives in 1982 because I was so uncomfortable and had never experienced anything like it before. The doctor noted my blood pressure was high and wondered if I had eaten too much bar-b-q with high salt. Looking back, I am pretty sure I had that bout of hives and several more over the next few weeks before they went away because I was under high levels of stress in my first serious, professional job. I mention this to raise the possibility that stress is a factor in your hives. 

 

When you mention having a bad sugar binge, I wonder about feeling guilty raising your stress levels... Maybe the sugar itself is related, but stress is a powerful force.

 

Developing the entire Whole9 lifestyle that includes not only eating Whole30-style, but also sleeping well, exercising appropriately, playing, establishing supportive relationships, etc. is always good. And nobody gets all of this worked out in 30 days. It takes a lifetime...

[theminimalistcommunity]

Hi!

 

I had chronic hives in response to the Epstein-Barr Virus (EBV) flaring up during a stressful period in my life. I contracted the virus in my teens when I had mono (glandular fever), but the virus stays with us. When stressed, the virus can detect an elevation in stress hormones and start to replicate and become active again. They went away after I recovered (although it took months and months.... I was extremely fatigued and had to really take it slow and be kind to myself). 

 

It is possible you have hives in response to a virus like EBV. 

[praxisproject]

Since it started before W30, you may want to look at other treatments than W30 itself.

 

Stress can have some interesting effects on the body. It doesn't have to be emotional stress either, if you're working too hard, not sleeping enough, doing high intensity workouts or even recovering from things like surgery, infections, insect/plant stings these things can all place a stress load on the body.

 

I've had hives myself from falling into a cactus.

 

If it's not stress, you may want to review anything that changed in September or October, location, clothes, lotions, new shop etc.

[SGCZ]

I can give some thoughts on causes of hives that might be of value?

 

First: Mast Cell Activation Syndrome (MCAS) for short. It's a type of mast cell activation disorder. It's considered very rare, however, it is a newly acknowledged type of mast cell activation disorder - so new the diagnostic criteria was only agreed on about 4 years ago. Experts are now looking at some random populations and think it may be significantly more common than first thought, but it's so little known that most doctors haven't even heard of it, or don't know how to test for it if they have.

 

If you were tested for a mast cell disorder, it's likely for mastocytosis, and many of the tests for that will be negative with MCAS. Even if you bring UP MCAS, unless you lucked out and got an expert testing you, you were probably not tested for this. Most doctors still think mastocytosis testing will find both of them, IF they have heard of MCAS at all. I was looking for answers for this for over 20 years with nothing until about a year ago, when I DID luck out.

 

What this disorder is:

Mast cells - the cells that release histamine which causes hives - in this disorder can react to any physical, environmental, or emotional stressor, instead of normal bodily functions and allergens, like normal mast cells do.  People with this often test negative for allergies, EVEN THOUGH their body has what amounts to an allergic reaction, because the process that CAUSES the reaction is different. One has to know exactly what to test for in order to find it. 

 

What can help to think of, re: histamine.

Think of it like a bucket. Our body releases histamine every day, to use for normal processed (elevates heart rate when upset or exercising, helps prepare gut for digestion, all sorts of stuff).  There is no problem unless that bucket 'fills up' and overflows, and then it causes hives and other reactions. 

 

So IF you have a mast cell disorder, you might just have mild reactions to, say, a few different foods, cold weather, and stress - but combined all together, it may be enough to make you react. 

 

What helps:

low histamine diet can help with this, yes (usually helps some with hives no matter what). It lowers the histamine level. Also, figuring out what causes the triggers can help, but is made much more difficult when you are reacting constantly.  Some odd triggers that cause hives in general (not just with this issue) can be: pollen, food, cold or heat, chemicals (like sulfites). 

 

 

Another possibility: histamine intolerance.

This is when the enzyme that breaks down histamine is too low (DAO), and so histamine from normal processes builds up and starts to cause hives. Low histamine diet also helps with this, too.

 

There is a nice website from a gal who has BOTH histamine intolerance AND MCAS, and she does a lot of research into natural mast cell stabilizers (many substances in veggies and fruits are helpful), dietary help, and other non-medicinal techniques that can lower symptoms some (http://lowhistaminechef.com ).

 

Also some support groups for mast cell disorders, mcad, and/or mcas on face book that can be a good source of answers, if this sounds like a possibility and you have some questions. :-)

[PamH]

Removing, and then ultimately reducing, histamine containing foods got rid of my recurring hives.  I developed the hives after starting the Whole30, really because I OD'd on the kombucha and fermented foods in an attempt to be healthy.   There are many good sites to help with histamine intolerance. I like thelowhistaminechef.com and mastcellblog.wordpress.com

 

I have not have a hive breakout since April 2014.

 

My bucket no longer tips.  

 

This week I put back a spoonful of coconut kefir each morning and am just watching.  I'm hopeful that I'm not THAT sensitive....

 

Pam

[Dancincrazy141]

PamH, I suspect I might be experiencing the same thing as you. Towards the end of my last Whole30 in October, I started experiencing itching and a rash on my legs, arms, and around my mouth/nose/jaw. I too, think I OD'd on Kombucha my first time around, and once made the connection and heard a bit about histamine intolerance, I eliminated it, and they mostly went away, lessened. Did you see a doctor/functional medicine practitioner to get to the bottom of what this was happening, or did you just solve it on your own by eliminating histamine containing foods? I feel best when I eat mostly paleo. Do you find that eating both paleoish and low histamine leaves you with nothing left to eat? Any advice from someone who has been there is appreciated. Any idea what might have triggered this, when I've never had any sort of symptoms like this prior to my first Whole 30? I've been eating mostly paleo for almost 2 years.

 

Removing, and then ultimately reducing, histamine containing foods got rid of my recurring hives.  I developed the hives after starting the Whole30, really because I OD'd on the kombucha and fermented foods in an attempt to be healthy.   There are many good sites to help with histamine intolerance. I like thelowhistaminechef.com and mastcellblog.wordpress.com

 

I have not have a hive breakout since April 2014.

 

My bucket no longer tips.  

 

This week I put back a spoonful of coconut kefir each morning and am just watching.  I'm hopeful that I'm not THAT sensitive....

 

Pam

[praxisproject]

Keeping a lot of your food and symptoms is your best bet, some symptoms are delayed, so it may not be the meal you just ate, but something from several days ago.

 

Histamines can rise in leftovers or pre-cooked items, so pay attention to this if you think histamines are a problem for you. 

 

There are a lot of unusual kinds of allergies and some are very mild or irritants rather than allergies, so they require load to trigger symptoms.

Fruits and nuts are often on these lists, but FODMAPs are across fruits, nuts and veggies.

 

Some of the unexpected ones:

• FODMAPs - http://www.marksdailyapple.com/fodmaps/
• Banana/plantain/avocado - Latex allergy (this can either be oral from eating them or on the hands from touching them and anywhere else touched with those hands)
• Cashews only - Cashews can have a toxin in them which is not present in other nuts
• Nuts, but not hazelnuts or brazil nuts - there is an enzyme which can be an irritant and it's not in hazelnuts or brazil nuts.
• Star fruit - Can be rough on kidneys for some people
• Pineapple & Kiwi Fruit - contain natural enzymes that break down gelatin and meat
• Eggs in general - Some people think they're okay with eggs, until they cut them out for 30 or 60 days - quality of eggs and what the chickens eat may be important for some people
• Nuts in general - Some people think they're okay with nuts, until they cut them out for 30 or 60 days.
• Coffee in general - Some people think they're okay with coffee, until they cut it out for 30 or 60 days.