Histamine Experience

[Gemini]

To all of those who are having issues with hives......I have been a member of this forum for a long time and thought I would share my experience with the hive problem.

Starting about 6 years ago, I started having a problem with hives.  Now, I have Celiac, Hashi’s, Sjogren’s and Reynaud’s so I guess it was inevitable that I would get hives.  It started out slowly and went from just a few spots on my face to full on facial hives, over the course of 5-6 years.  Anti-histamines worked well in the beginning but over time, became less affective.  I tried sublingual allergy drops, after having done allergy shots when I was younger, which helped me then with seasonal allergies.  I did not have a hive problem back when I did allergy shots.

Well......they did not seem to be doing anything, so after 4 years, I stopped.  It all came to head over the holidays last year when I just could not get rid of them completely.  The permanent rash that developed started to resemble a lupus rash so I finally bit the bullet and went to my first Rheumatologist appointment.  Now, I knew the root problem was hives but because it looked more like a lupus rash, they did boatloads of blood work for every skin disease known to man.  They do that when you get older like me.  The doctor I saw was very good and very caring and personable.....which was nice for a change.  Well, it all came back negative, which was a relief, and as I already have 4 AI diseases, I was a bit concerned I had popped for another.  They even did a skin biopsy to test for the skin version of lupus, which was negative.  That was done by the Dermatologist I then was referred to.  Yes, I was in doctor hell, but not for long.

The dermatologist, who was very sweet and very nice,  thought it a contact allergy to products I was using on my face. She turned out to be very good, even though it was my first experience with a doctor who was young enough to be my daughter.  ?. She gave me strong steroid cream for it, to clear it up, and it worked really well.  I kept mentioning the hive thing, but because it did not look like hives by the time I saw both docs, they very politely kept steering me in another direction.  I mentioned maybe a histamine problem, because everything else was negative, but I could tell they had no real knowledge of it.  So, once again it was up to me to figure it out.  They were helpful though in helping me figure out what it wasn’t.

I bought a book on the histamine problem, written by a doctor with years of experience studying it.  I quickly realized that following the diet as strictly as the book mandated was going to be a problem as I am a thin Celiac.  It is not a healthy diet to follow, long term.  So, I decided to cut out the main high histamine offenders and see what happened. Those were red wine, which is obscenely high in histamine, citrus fruits, tomatoes and cheese.  I was dismayed to read that, even though I eat a healthy, whole foods diet, it was loaded with high histamine foods. It figures. After using the steroid cream and getting my skin back, I was waiting for my skin to explode with hives again. I followed the diet as best I could and 6 weeks later.......not one hive to be seen at all!  I have never been able to go for more than a couple of weeks without the problem and since cutting out those foods, nothing. Nada. My skin is clear and non-red for the first time in 5 years.  I can’t wait to see the Dermatologist for the follow up, when we are released from all this isolation, to see what her reaction is.  Once again, I am going to have to educate doctors on the other cause of hives in people with AI disease.  It wasn’t from the other AI problems, it was the histamine.  I have been able to have small amounts of cheese and drink an occasional glass of white wine with no hives appearing.  The dermatologist wanted me to do the skin elimination diet, stripping me away from all my favorite skincare products and I never started it because the hives never came back after changing my diet.  That made me happy because I like my products.

So, if you have hives that are becoming a problem, you can try the diet without being as strict as they seem to think it has to be.  Maybe some people will have to do that but I found that just by dumping the highest histamine foods, it seems to be working like a charm.  It is all about tolerance levels with histamine so I can eat some of these foods but in much smaller quantities and not every day.  I can have the wine and cheese about 1-2 times per week, but not everyday.  It’s always the food, isn’t it?  ?

[cyclinglady]

Hi Gemini!  

I also struggled with hives.  Each time a hidden gluten exposure triggered it (dang, I never even ate a gluten donut or crust sourdough bread to trigger it).   Is it related to celiac disease?  Who knows?  But I personally think that autoimmune issues are all related.  I have Autoimmune Gastritis, celiac disease and Hashimoto’s.  Any of those can flare independently of each other or flare all at once (not just symptoms, but measured serum antibodies).

My last bout lasted six months.  It started every afternoon with a slight tummy ache, an itchy head and by the time I stopped itching my head, the hives would erupt down my arms, abdomen and legs — even the soles of my feet had hives.  Antihistamines  (prescribed by my allergist and high doses daily) did reduce the itching and by morning, the hives were gone only to reappear in the afternoon. I tried to follow a low histamine diet too as well as the Fasano (strict gluten-free) diet.  I thought for sure that I was still getting gluten exposures.   But a repeat endoscopy (almost a year later) revealed a healed small intestine, but got me the Autoimmune Gastritis diagnosis.  

My allergist suspects mild mast cell activation and we decided to not formally pursue a diagnosis.  Mine was not severe enough for chemo-like drugs.  I could function and antihistamines help.  What else could my doctors do?  Nothing.   My Mast Cell issues have since calmed down.  But of course it is the full glass scenario.  Add in seasonal allergies and my body is on high alert.  A mosquito bite will trigger hives and swelling as will medications like ibuprofen, aspirin or even acetaminophen.  

I also have Rosacea.  Foods definitely trigger it.  Foods like garlic and onions or red wine.  Diet can impact us.  We are all unique and must find our own way to achieve good health.  

Glad you are getting answers.  Stay safe.  ?

 

[notme]

hi, gem! good to see you!!  

I have found I also have histamine problems.  not hives (yet! lolz) but I need to watch what I eat and rotate foods to stay 'balanced' ?  daughter and brother = same.  brother used to (like you, cyclinglady) break out in hives and swell up by being bit by any insect, used to need to go to the e.r. where they would give him iv benedryl and antiacid, didn't understand the combo for years until I started researching mast cell issues.  now, I take my allergy med and anti acid at night, generic Flonase and micro-dose of Xanax in the morning.  that's my combo, seems everybody is different.  similar combo of meds work for daughter and brother.  

everybody stay safe!!

[Gemini]

Hello cyclinglady and notme!

So good to hear from you both!  After reading your posts, I remembered that the insect bite problem happens to me also.  Mosquitos became an issue and the bite site would swell up and turn bright red and itch like I have never itched before.  It was so annoying and I didn’t realize until I researched mast cell issues that all my symptoms were connected.

The last time I got hives about 7 weeks ago, before I saw the dermatologist and got the steroid cream, I actually got angioedema.  It happened, of course, late in the day, after I must have had high histamine foods and my cheeks, under my eyes, got so swollen, I was actually worried.  I never have had breathing issues and did not have them that night.  That would be the only reason I would ever go to an ER.  So, I swallowed some Benadryl and it was better in the morning.  Since cutting way back on high histamine foods, things are so much better that I can’t believe it!  I think the reason that the docs didn’t quite believe me is that the hives only ever appeared on my face.  It is more common to have them body wide.  

I think I was in denial for awhile because I was resistant to giving up even more foods.  I was upset to give up the red wine.  However, after a couple of days of no wine, I was fine with it.  It does get annoying that we suffer so much from food issues.  I am thin so can’t give up too much.  But I snuck a 4 oz. glass of red wine in the other day, because I wanted to see what would happen and was thrilled to find no hives the next day.  So, you are all correct.......it’s all about tolerance levels and if I can have a small amount once a week or so, that is all I need.  I went a little crazy over Christmas with the delivery from the wine club because there is stress in my life with the 2 mother’s in Assisted Living right now.  So, too much wine and cheese, not to mention my love of smoked salmon and I must have been toxic with the histamine.  Not anymore!  I am being good because I am thrilled to have conquered yet another problem.  Maybe this summer I can actually go outside when there are mosquitos and not swell up like the Hindenburg when I am bitten.  ?. You can also bet I am going to ask these doctors to read up on histamine intolerance as it relates to Celiac Disease.  It was good that I found out I have no other AI diseases but I still had to figure this out without their help.  What cyclinglady said about the glass or barrel filling up is so true.  I have to be more careful when the weather is rainy and moldy because that affects my allergies. Add some high histamine food into the mix and boom!  Hive hell.

I also had to say good-bye to the wine club.  ??‍♀️  But that has paled compared to this pandemic we have going here.  I am not finding it hard to stay at home because we can all connect much easier these days than when I was younger.  But I am getting annoyed that I am actually stressed when having to go food shopping. Not knowing how this virus affects each person is stressful.  Not to mention that I am now considered high risk because I had one birthday that tripped me into being considered older.  WTF????????  ?

I hope everyone stays well during this time and I’ll be on the forum more often now that we are in quarantine!  It’s great to talk to everyone again. ?

[notme]

I am sending billy to the grocery store, etc.  hey, lady, just lie about the age to that virus!!  you don't look a day over young, anyway!  I feel ya - heyyy, I busted the 120 lb mark at my last g.p. visit I now weigh a whopping 121 lbs - wooo hoooo - I am partially attributing that to my lower histamine awareness that allows me to eat lots more things, just in moderation.  therefore, i'm eating more, not just to stay alive, lolz.  a WHOLE jersey mike's sub instead of a half...  I feel ya, I had cut out so many foods for a minute there.  good.  luck.  with.  educating.  doctors.  about.  mast.  cell.   ?

also, I had a cholesterol/triglycerides/liver enzymes thing going on last year, eating more nuts, seeds, low fat blah blah, just got my labs back, everything is back to normal.  even the hardest working liver in the universe   i can't drink red wine, it makes my eyes leak drama   gimme some white trash chardonnay or bard's beer, we'll be bff's  

[Gemini]

You never fail to make me laugh, notme!  As far as the age thing, hubby and I made the threshold last year as we both turned 60.  They card you at the grocery stores here.  Hubby has been going, for the most part, to the grocery store as my husband has an immune system they should study, it’s so good.  In 38 years if work, he has missed about 4 days due to illness.  Last spring, both his mother and I got Norovirus, which was a first for me.  He took care of both of us, the two of us slept in the same bed together all week and he never got it.  He doesn’t even get colds so guess what?  He goes and does all the dangerous missions until this blows over.  What gets me is that I feel better at 60 then I did at 30.  Go figure!

If this goes on too long, I may even gain weight because now I am home and doing all sorts of cooking.  I found a gluten free scone mix to try.  Yum!  I really don’t want to gain too much as I just can’t keep having to buy new clothes all the time!  

White trash chardonnay.......???????????

[NNowak]

I, too, have histamine challenges. Decades of inflammation, migraines, GI issues, extreme weight loss, itching.......finally pressed the docs. After several appts with various specialists who segmented my symptoms according to their specialty, they still missed the MCAS. It took a functional medicine doctor 6 weeks to diagnose something western medicine had missed for decades. 
 

The bug bite reactions are crazy!  I’ve had those since I was a small child, and my son with celiac has the same reaction. Interesting we all share that similarity. 
 

So I’m on low dose naltrexone, which has settled the extreme reactions to everything. I also use nasacort and a steroid inhaler twice daily as well as Benadryl in the evening. I can dabble with a bit more histamine foods now, but red wine is a definite NO!!  
 

Be safe and stay healthy in this unprecedented climate of ours.