Anybody here eating a low histamine diet?

[PamH]

Hopefully I can find some guidance or at least some experienced low histamine food eaters…

 

I am thinking I need to remove high histamine foods for a time period.  Doing some digging, my symptoms (that are worsening) seem to point to histamine release and/or mast cell activation disorder.  If I look back, I have varying symptoms that also raise red flags going back 25 years.

 

This is what I am dealing with now (and historically if I indicate):

 

*hives on my arms and knees that appear out of nowhere (just sitting doing nothing) and disappear in 90 minutes.  This has happened 4 times in 2 months in 2 week cycles.

 

*red hot ears (used to happen without the hives and now with hives.  Historically after drinking red wine)

 

*Unexplained anxiety

 

*Hypotension (I've always had low BP but now I get sudden drops with cause symptoms)

 

*Fatigue, brain fog, irritability (blamed perimenopause)

 

*Tachychardia (since college)

 

*throat tightening, skin tingling, tongue feels a bit swollen (can't pinpoint food)

 

I guess I should not take up too much space going through my history, but I was just wondering if anybody else here has taken up the low histamine diet along with Paleo or Whole30.

 

If so, how long did it take to notice a difference and did you have to stick to the list or did you find variation in what you could/could not eat?

 

Thanks

 

~Pam

[Tina R]

I am not on the low histamine diet. I was debating between that and the FODMAP. Whole30 states that only about 1% of the population has a histamine response so I opted for the FODMAP. Also the thought of not having salad dressing or mayo was just too much for me. You can't have any citrus or vinegar. I am not sure about your other symptoms but I noticed that you have throat tightening? Do you take Advil or NSaids? I have a similar feeling when I take Advil. Also I have a friend who has a severe reaction to Advil and his throat closes up.  I hope you find the answers you are looking for.

[PamH]

I am not on the low histamine diet. I was debating between that and the FODMAP. Whole30 states that only about 1% of the population has a histamine response so I opted for the FODMAP. Also the thought of not having salad dressing or mayo was just too much for me. You can't have any citrus or vinegar. I am not sure about your other symptoms but I noticed that you have throat tightening? Do you take Advil or NSaids? I have a similar feeling when I take Advil. Also I have a friend who has a severe reaction to Advil and his throat closes up.  I hope you find the answers you are looking for.

I do not take Advil or NSAIDS except maybe 3 times a year at most?

 

Thank you for your encouragement.  I am at the point where I am nervous to eat.  Tonight I learned, at least for today, I do not react to acorn squash or coconut oil.

 

I think this could be a response to stress, menopause, thyroid impairment rather than a true mast cell disorder or worse.  Still the symptoms just stink!

[mtnerak]

I was taking antihistamines everyday because I am was itching.  When I was little--i would randomly break out in hives and my mom could not figure out why but when she found out how they did allergy testing she said no way.  Then later in in high school and college it would happen again when I  would drink papaya juice or consume a large quantity of citrus, pineapple, too many sex on the beaches... and benadryl would not get rid of the hives. I would end up on atarax.  It took me weeks to figure out the citrus, citric acid connection- even anything with tomatoes would bring the hives back, but then once I stayed away from every thing for several weeks I could have little bits again.   Run on a treadmill- i would start to get red itchy blotches on my arms chest legs stomach-- Basically any kind of aerobic exercise I could go about 20-30 minutes and then it would start so I just started living on antihistamines.  When I would think one I had quite working because I was getting itchy all the time I would switch to another.  

 

Two years ago I started getting non stop migraines and dizziness, eventually got diagnosed with a meningioma that I am doing wait and watch for after that I started following a anti-inflammatory diet to try and get control of my migraines went of the anti histamines during the elimination phase and broke out in hives again and once again could not come up with a trigger-- 6 months later figured out one was pecans.  So now I am doing the Whole 30 with the AIP for my endometriosis and hoping to still get better control of the migraines, went off the antihistamines again and the burning itching started again.  So I did more research  and I think I fall in to the same category so it limits the foods a little more, but I am still doing bone broth because I also want to heal my gut after years of nsaids.  I do follow the low histamine chef and have read some of her interviews with some Drs which is why I am staying cold turkey off my antihistamines.  I have not woken up for the past three mornings with heart palpitations so that is a plus.  I am also doing tapping several times per day.  Trying to freeze most of my left overs until the next meal. 

 

Check out the low histamine chefs website she has some info on there-- especially about not being afraid to eat and not limiting your foods.  I have used Histame in the past when I was going out to eat and knew I was going to be drinking wine and going to eat bread.  Years ago I sort of thought I had this but when I looked at the avoidance list I said no way.  Now that I think I understand it is more about getting that bucket emptier and figuring out your individual tolerances I think it is not harder than me doing the whole 30 -aip so I think it is perfect timing for me to take care of it all at once. 

[mtnerak]

Here are two links to interviews she did. 

 

 

http://thelowhistaminechef.com/dr-janice-joneja-histamine-intolerance-interview-transcript/

 

http://thelowhistaminechef.com/dr-castells-interview-lifestyle-changes-do-work-for-mast-cellhistamine-disorders/

[PamH]

I was taking antihistamines everyday because I am was itching.  When I was little--i would randomly break out in hives and my mom could not figure out why but when she found out how they did allergy testing she said no way.  Then later in in high school and college it would happen again when I  would drink papaya juice or consume a large quantity of citrus, pineapple, too many sex on the beaches... and benadryl would not get rid of the hives. I would end up on atarax.  It took me weeks to figure out the citrus, citric acid connection- even anything with tomatoes would bring the hives back, but then once I stayed away from every thing for several weeks I could have little bits again.   Run on a treadmill- i would start to get red itchy blotches on my arms chest legs stomach-- Basically any kind of aerobic exercise I could go about 20-30 minutes and then it would start so I just started living on antihistamines.  When I would think one I had quite working because I was getting itchy all the time I would switch to another.  

 

Two years ago I started getting non stop migraines and dizziness, eventually got diagnosed with a meningioma that I am doing wait and watch for after that I started following a anti-inflammatory diet to try and get control of my migraines went of the anti histamines during the elimination phase and broke out in hives again and once again could not come up with a trigger-- 6 months later figured out one was pecans.  So now I am doing the Whole 30 with the AIP for my endometriosis and hoping to still get better control of the migraines, went off the antihistamines again and the burning itching started again.  So I did more research  and I think I fall in to the same category so it limits the foods a little more, but I am still doing bone broth because I also want to heal my gut after years of nsaids.  I do follow the low histamine chef and have read some of her interviews with some Drs which is why I am staying cold turkey off my antihistamines.  I have not woken up for the past three mornings with heart palpitations so that is a plus.  I am also doing tapping several times per day.  Trying to freeze most of my left overs until the next meal. 

 

Check out the low histamine chefs website she has some info on there-- especially about not being afraid to eat and not limiting your foods.  I have used Histame in the past when I was going out to eat and knew I was going to be drinking wine and going to eat bread.  Years ago I sort of thought I had this but when I looked at the avoidance list I said no way.  Now that I think I understand it is more about getting that bucket emptier and figuring out your individual tolerances I think it is not harder than me doing the whole 30 -aip so I think it is perfect timing for me to take care of it all at once. 

THANK YOU

 

I just went to the gym and noticed a very faded version of the hives (even in the same pattern) on my knees after I was done with the cardio.  Even as far back as college, I remember my face flushing after cycling and not going away for a long time afterwards.  Very red, I mean.   Only thing is they do not itch.

 

I really appreciate the time you took to tell me your story.  I will not let it get to the point where I do not eat… love food too much!  Thankfully, I love to cook.

 

I think some of my anxiety comes from wondering "will this time be an anaphylactic response?"   The hives are all so new to me.  I have played detective in the past, so I guess i can do it again.

[PamH]

Here are two links to interviews she did. 

 

 

http://thelowhistaminechef.com/dr-janice-joneja-histamine-intolerance-interview-transcript/

 

http://thelowhistaminechef.com/dr-castells-interview-lifestyle-changes-do-work-for-mast-cellhistamine-disorders/

and I am hoping your meningioma has been removed, reduced and benign

[Khhdesign]

I have not done the low histamine version (yet), but I'm curious to see other responses.

I have food-dependent exercise-induced anaphylaxis. Basically, if I eat something I am allergic to and get any exercise (even just walking around), I'll have an allergic reaction ranging from a few hives to all-over hives or trouble breathing. Scary for sure, especially when you don't know what is triggering it. I became afraid to eat lots of things, or in restaurants, and greatly reduced how often I exercised because I was afraid to do it anywhere close to when I ate.

When this started years ago the allergy tests didn't reveal anything but it seemed to be triggered by milk products, so I cut those out about 7 years ago. That seemed to do the trick for a while; I would have occasional reactions and just thought I had eaten something with milk that I didn't realize. About a year and a half ago I started having reactions again so I did allergy testing again, still with no helpful information. My doctor recommended that I continue with no milk products, and also cut out gluten and items with brewer's and baker's yeast. That really seemed to help, I had no reactions for about a year. She said I could add in some wheat to see how I did, which went fine for a while. Then I had two reactions within two weeks.

That's when I decided to do the Whole30. I figured I was halfway there with no milk, yeast or gluten. I hoped it would help me identify triggers, and maybe give my immune system a rest so it can calm down. So far so good, but sometimes I still get the kind of inflammation you described with hot ears or flushing in my face. I think that my system has had years of being stirred up, it will take time to get it back to a happy place. Good thing I'm really enjoying eating this way and don't see any reason to stop!

So a long story to say that I should probably consider doing the low histamine protocol too, and am curious about others' experiences.

[PamH]

This morning I am noticing my jaw numbing and getting tingly while drinking my half caff coffee with coconut milk and grass fed butter.  I wish I had poured just a black cup today to help weed out culprits.  I'm a slow learner, I guess.  

 

I seem to have no issues (immediate) with coconut OIL and ghee.  Wondering if it is the caffeine?  

 

Now that I am paying more attention, I do notice that my jawline and tongue are tingly quite often after eating.  Kind of like the end stages of wearing off from novocaine.

 

A friend of mine on Facebook recommended a natural healing clinic in my area.  She was tested a few years back to have an actual allergy to histamines.  Her situation was much more dramatic than mine but I think I will call them on Monday and arrange a visit.  I do not like the idea of entering into the Western Medicine arena for this (drugs will be given and I'll be shooed out the door in 10 minutes) so I'm happy to find some local help.  I'll keep everyone posted.

 

I avoid GMOs, but I often wonder about our changing food supply.  Why are more and more people having reactions to food?  I just read that there has been a 265% increase in hospital visits for allergic reactions since the introduction of GMOs to food crops.  Now I know correlation does not equal causation but it should make us pause…

 

Thank you for sharing your story, too, Khhdesign

[PamH]

Well, going to cut out coffee and tea for a few weeks to see if that makes a difference.  Wouldn't it be fantastic to find out I have a single FOOD intolerance or allergy and not a widespread issue?  

 

Coffee.  I will miss you, my friend.  

 

I've been using caffeine for the past year or so to help boost my blood pressure in the morning after cutting it out completely for about 5 years prior to that to try to help with tachycardia.   I've been on a 'seek and destroy' path since hitting 40!  Perimenopause has literally been a Bitch.

 

Breakfast:  gluten free oatmeal with ghee/salt and a pear

 

Snack:  apple

 

Dinner:  large chicken breast with skin (ate husband's chicken skin, too!), baked sweet potato fries and a maple syrup sweetened almond cookie (gluten).

 

No immediate tingly feeling with any of these foods outside of my morning coffee.  I bought decaf to see if it makes any difference.  One more try!

[mtnerak]

  I've been on a 'seek and destroy' path since hitting 40!  Perimenopause has literally been a Bitch.

 Yes my world started turning upside down with "hormone" problems about a year before I turned forty I will be 43 soon.  My meningioma is still there it is a medial sphenoid wing -- meaning by my optic nerve  and it is almost resting on my carotid.  By all appearances it appears "benign".  It has not grown in the past year and a half.  My goal is for that to continue since I really do not want my skull cut into nor my head radiated.  As soon as it shows evidence of growing I will have to doing something.  They tend to have hormone receptors so I am definitely trying to avoid foods like flax and soy.

 

Also PamH remember whenever you eat your body releases histamine naturally in response to digestion.  I have been finding that I start to get that burning itchy feeling for about an hour or two after I eat--then typically it has been calming down.  Right now I don't think that is good enough but somewhere I did read for some people it can take up to a year so a few weeks  definitely is not a time to get discouraged.  I do think I probably won't be able to start my reintroduction for my AIP when I wanted to though unless this can start to calm down more.  

 

Bone broth doesn't seem to bother much or for too long --just an hour or two after I eat which seems to be most meals and not any worse than the others.  I make mine with apple cider vinegar which has less histamine than some other vinegars and is not histamine freeing like some of the citrus.  Then last week I had two strawberries -- that was two strawberries to many.  But since I had had 3 nights of good sleep without waking up feeling like my chest was vibrating I decided to have some blackberries on my salad last night.  That was 10 blackberries to many.  I woke up at 1 am  and my heart felt like it was racing my feet and palms were on fire, my back felt like it had a raging sunburn and the inside of my ears were itching.  So I spent the next 3 hours awake.  Today I think I will stay away from the bone broth, go  back to having an apple and I don't think I will do any experimenting this week.  I would really like to try and start some reintroductions next week of some spices and eggs, but that may be put off a wee bit.   

 

I would think cutting out the coffee should help.  I know some of the teas can be problems.  I started cutting back on my caffeine intake a while ago.  Before I started the whole 30 I was having about a half a cup in the morning.  Mainly just to sip on something warm.  Now I have been having soup for that same comfort feeling.  

[praxisproject]

As well as histamines, if you're not sure what's triggering things, salicylates (oranges/citrus), FODMAPs and more unusual allergies like latex (avocado, banana) are some things to look into.

[PamH]

Well, my cup of black decaf coffee didn't taste the best but I drank it.  I felt a small amount of the jaw tingling so I think I might try it again tomorrow and then let coffee go completely if it happens again. 

 

Brunch out with friends.  I had a big bowl of organic oatmeal with almonds.  I felt pretty good except for about a 2-3 minute time frame where I thought something was going to happen:  got light headed and 'floaty' and felt like I was going to flush.  Almost an anxiety reaction.  I'm not sure it was me just creating the anxiety because I had already thought to myself 'this is going well' since I hadn't had any hives after 20 minutes of eating the oats.  

 

Snacked on about 20 macadamia nuts (raw) when I got home and had a cup of turmeric/ginger tea.  I've been using the fresh root and steeping for about 10 minutes.  Love the taste and hoping the anti-inflammatory properties help somehow.

[mtnerak]

Well, my cup of black decaf coffee didn't taste the best but I drank it.  I felt a small amount of the jaw tingling so I think I might try it again tomorrow and then let coffee go completely if it happens again. 

 

Have you tried a little coconut oil or coconut butter in your coffee to see how that tastes.  I don't think I would have been able to have the oats with the almonds and then had the macadamia nuts on top of that.  I don't think i do to well with grains in general.  Wheat has been a major problem for about 4 years. And nuts are ok in small amounts and not everyday or more than once a day for me.  The tea sounds good.  

[praxisproject]

I always get sick from oat, even gluten free ones.

 

The tea will help, drink as much as you can

[PamH]

Have you tried a little coconut oil or coconut butter in your coffee to see how that tastes.  I don't think I would have been able to have the oats with the almonds and then had the macadamia nuts on top of that.  I don't think i do to well with grains in general.  Wheat has been a major problem for about 4 years. And nuts are ok in small amounts and not everyday or more than once a day for me.  The tea sounds good.  

I have been using coconut milk for quite a while now in my coffee but I wanted to see if it was the coffee, per se, that caused a reaction.  This morning I drank another big cup with grass fed butter and have not felt 'off'.  It was mostly decaf.  I think I just need a darker roast.  

 

I thought oats were a problem but I do not think they are based on the past 2 days.  They are plain, gluten free.  When I introduced oats before they were always a part of a muesli or muffin so that isn't the best way to make a decision. 

 

Macadamias and almonds are not the best choice for me, but more so because I will eat too many of them and/or it will lead to grazing the pantry.  They do not cause any mouth tingling/swelling or salivating, though.

 

I also question grains in general, but I love, love, love oats!  If I can tolerate them from time to time then I will certainly keep them in my rotation.  I usually only crave them in the colder months, anyway.

 

Trying to figure out what to eat for breakfast!  Apparently, eating left over meat is a no-no due to histamine build up.  My husband took the NY strip to work anyway.  Eggs?  A few plain scrambled eggs are in order.  I have to work most of the day and I really don't want to eat while I am there to avoid an issue while at work.  Nothing worse than feeling unstable on the job.  Ugh.  I think I will just eat a huge breakfast and try to make it through the day with just an apple or a pear.

[mtnerak]

I have been freezing leftovers that I want to eat and then just reheating directly from the freezer.  That has been ok for me so far, but I am not doing that all the time.  I just need to find a balance that is something that I can do long term and is manageable.  I think next week I am going to start reintroducing some of my foods that I have been excluding from the AI protocol but not some of the histamine releasing or higher histamine foods on the lists.  I think I will save those for last and leave a week or two between them to make sure levels can go down between, then I think I will start working on doing some "challenges with some of the higher histamine foods and releasing foods to try and figure out some of my limits but this is probably months and months away. 

[Chaumbrielle]

I was diagnosed with Chronic Idiopathic Urticaria which just means you have hives for unexplained reasons.  I was on a hardcore histamine blockers with 4 zyrtec's a day, 2 zantac's, 1 singulair, prednisone and benedryl and various other blockers did not work even with taking 10-14 per day, then I went to immuno-suppressants, first was plaquinel which made me lose about half my hair and didn't work at all, finally I got on Cyclosporin which worked pretty quickly to reduce and eliminated them about 4 months into treatment. YAY Finally relief! Wend down on all the meds except for keeping 1 zyrtec a day Fast forward to 10 months later and the hives are back and this time it's not just preservatives that seem to trigger the hives, and the medicine doesn't work at all.  .  Now it's different all the time, sometimes tomatoes and other typical histamine foods trigger the hives, and sometimes they don't.  I now equate it with if you imagine a glass that is almost full.  if you add anything to it, it will overflow.  But if that glass is half empty, it doesn't overflow for a while.  So I think with Chronic hives, you can't necessarily predict how you will react and the only thing you can't count on is that it will be inconsistent. 

 

As I sat in the Dr's office after trying a new drug that is in clinical trials for hives - I had to wait 2 hours in the office after getting the shot to be sure I didn't go into anaphylactic shock, I started reading "It Starts With Food."  And wow, at that point, nothing was working, and I had tried elimination diets on my own which with the inconsistency all it did was frustrate me.  So this looked like a great option for me.

 

I gave the shot a month to work, which it did not, or perhaps it did slightly because the hives weren't quite as bad - not covering me every day, so I started my whole 30 on Jan 2nd. I did not do the auto-immune protocol thinking I would do the normal program first and see how I did.  On day 28, I woke up with no hives.  It's been almost 3 months and I don't have them back.  I just finished my second round of whole 30- realizing that I haven't beat the sugar dragons and making sure I don't get sloppy and am hoping to see improvement with my other auto-immune conditions. (Hashimoto's and Addison's - primary adrenal failure)

 

So I don't know if any of that will help you, feel free to reach out with questions.  It's been almost 2 years of me modifying my diet and nothing worked until this.  It saved my sanity.  Thank you Melissa and Dallas! 

[PamH]

What a wonderful outcome!  I am so happy for you.

 

I agree with the glass half full/spilling over analogy.

 

I am coming up on the 2 week mark for when my hives have appeared in the past.  I am hoping my food choices are keeping my glass half full or at least not spilling over.  

 

Thank you for your offer of help/support.  

[PamH]

I was diagnosed with Chronic Idiopathic Urticaria which just means you have hives for unexplained reasons.  I was on a hardcore histamine blockers with 4 zyrtec's a day, 2 zantac's, 1 singulair, prednisone and benedryl and various other blockers did not work even with taking 10-14 per day, then I went to immuno-suppressants, first was plaquinel which made me lose about half my hair and didn't work at all, finally I got on Cyclosporin which worked pretty quickly to reduce and eliminated them about 4 months into treatment. YAY Finally relief! Wend down on all the meds except for keeping 1 zyrtec a day Fast forward to 10 months later and the hives are back and this time it's not just preservatives that seem to trigger the hives, and the medicine doesn't work at all.  .  Now it's different all the time, sometimes tomatoes and other typical histamine foods trigger the hives, and sometimes they don't.  I now equate it with if you imagine a glass that is almost full.  if you add anything to it, it will overflow.  But if that glass is half empty, it doesn't overflow for a while.  So I think with Chronic hives, you can't necessarily predict how you will react and the only thing you can't count on is that it will be inconsistent. 

 

As I sat in the Dr's office after trying a new drug that is in clinical trials for hives - I had to wait 2 hours in the office after getting the shot to be sure I didn't go into anaphylactic shock, I started reading "It Starts With Food."  And wow, at that point, nothing was working, and I had tried elimination diets on my own which with the inconsistency all it did was frustrate me.  So this looked like a great option for me.

 

I gave the shot a month to work, which it did not, or perhaps it did slightly because the hives weren't quite as bad - not covering me every day, so I started my whole 30 on Jan 2nd. I did not do the auto-immune protocol thinking I would do the normal program first and see how I did.  On day 28, I woke up with no hives.  It's been almost 3 months and I don't have them back.  I just finished my second round of whole 30- realizing that I haven't beat the sugar dragons and making sure I don't get sloppy and am hoping to see improvement with my other auto-immune conditions. (Hashimoto's and Addison's - primary adrenal failure)

 

So I don't know if any of that will help you, feel free to reach out with questions.  It's been almost 2 years of me modifying my diet and nothing worked until this.  It saved my sanity.  Thank you Melissa and Dallas! 

Can I ask what test were run?  I think of histamine intolerance running hand and hand with systemic inflammation but my markers (bloodwork) for that are quite low.  Hashimoto's ruled out via full thyroid panel (TPO <5 IU/mL) and C Reactive Protein very low (.90 mg/L).   I do show symptoms of hypothyroid and adrenal fatigue, though, so I try to treat myself like I have an autoimmune disorder to some degree anyway.  Cortisol rhythm all messed up.

 

I am having a hot flash as I type.  Ugh.  Hate those things!

[melbournegirl]

Any improvement when you increase good fats?... Particularly helpful for skin issues. As is bone broth to reduce leaky gut and probiotics to kill off my bad bacteria

[PamH]

Any improvement when you increase good fats?... Particularly helpful for skin issues. As is bone broth to reduce leaky gut and probiotics to kill off my bad bacteria

I think my issue is related to what I had been eating in an attempt to be healthier, of all things.  I greatly increased fermented foods, for one.  Also started a vitamin regimen from a local MD for perimenopausal symptoms that has some vitamins they say to steer clear of (and they were in high doses).  I think I filled my glass to the tipping point unintentionally.

 

So, daily kombucha, fermented vegetables, avocado, apple cider vinegar are now out.  Tomatoes and spinach are minimal if gone for now.  Trying to empty my histamine glass.    I think bone broth is a no-go for now.

 

I have not had a full outbreak of hives for a few weeks now so that is good.  I have had some isolated areas that look suspicious (red blotchy palms) and major hot flashes after eating blue cheese dressing.

 

I eat quite a bit of fat.   Sometimes I think too much.  I lean toward fatty cuts of meat, coconut oil/milk, avocado, nuts and ghee to the point of excess.

 

Such an individual mystery!  I am happy to be feeling a bit better so I will stick with how I am going.  The stress of it all is making it tough to ignore the sugary foods so I might even start another Whole30 during this time to help that out.  Ugh.  Not looking forward to more restrictions but if I feel better it is worth it.

[praxisproject]

On the blue cheese dressing, not sure about what you can get locally, but here, most blue cheese mould is grown from a wheat base and isn't gluten free.

[PamH]

On the blue cheese dressing, not sure about what you can get locally, but here, most blue cheese mould is grown from a wheat base and isn't gluten free.

For me, the blue cheese issues has to do with being high histamine and maybe a factor in my recent hives and history of what now seems like a histamine sensitivity.  It makes me sad!

 

One day I will hopefully be able to tolerate it in moderation.

[mtnerak]

I started taking quercitin + C from twin labs because neither is derived from citrus and allerase.  I had gotten the idea for the allerase after reading this post.

 

http://peelingbacktheonionlayers.com/could-histamine-be-sabotaging-your-digestive-health/

 

I had already started the quercetin and noticed a difference pretty quickly-within the first couple days. I had to abandon any of my reintroductions on the whole 30 because of spring and the pollens I could not tell what reactions were from food, allergies, or what.  It has so I abandoned my reintro after the second food since I was back to having a headache every day.  I have since started the allerase.  It may help some but not as dramatically as the quercetin.