Is histamine intolerance woo?

[popmom]

That’s it. I have appointments with gastroenterologist and (second visit) rheumatologist this month. I wanted to ask about it because I’ve developed some extremely unpleasant GI issues about 6 weeks ago that comes and goes.
 

Am I going to get blown off? 

[bolt.]

I have no answer to your actual question, and I wish you well with your appointment.

I thought it might lift your spirits to know that I mis-read your title as "Is histamine AN intolerance TO woo?" -- which I interpreted to mean, "If I think I feel an legitimate histamine reaction when I'm forced to listen to people who believe pseudoscience, could that be an actual allergy that a person could have?"

Again, best of luck as you pursue a solution to your discomforts! I hope no one blows you off.

[kbutton]

Yes/no and maybe.

People with mast cell activation syndrome can be sensitive to histamine. They can also be sensitive to other things (salycilates, oxylates, hormones, etc.) and also have mast cell reactions. But absolutely, some people with MCAS have excess histamine that you can test for.

Some doctors blow people off no matter how they lead. Some doctors like to put people in their place for asking about specific things and being close but not quite right...I can't explain medical people. Some are just jerks or partial jerks. A few come across as a bit aggressive, but then you find out they are simply intense and precise but seriously care about their patients.

I hope it goes well!!! 

[kbutton]

2 minutes ago, bolt. said:

I have no answer to your actual question, and I wish you well with your appointment.

I thought it might lift your spirits to know that I mis-read your title as "Is histamine AN intolerance TO woo?" -- which I interpreted to mean, "If I think I feel an legitimate histamine reaction when I'm forced to listen to people who believe pseudoscience, could that be an actual allergy that a person could have?"

Again, best of luck as you pursue a solution to your discomforts! I hope no one blows you off.

Stress can make mast cells degranulate, so if you have MCAS, it's very much in the realm of possibility! Lol!

[Katy]

Idk what that particular doctor will say. It will depend on their own experience and recent research knowledge. But it’s definitely not woo. It made a huge positive difference in my health. And when we moved and I ate a bunch of fast food I thought I was going to die. I took some DAO and immediately improved. 
 

There’s a book by a physician, the Fiber Fueled Cookbook, that has a whole low-histamine food plan. 

[skimomma]

4 minutes ago, Katy said:

I took some DAO and immediately improved. 

Where did you get this?  I thought it was pulled from the US market some time ago?

To the OP, it is not woo but who knows what a doctor will say?  I did not even bother bringing it up with mine since it would have to be controlled by my own actions anyway.  I do have to say after more than a decade of suffering with this, I was just so relieved to have figured it out (which I think might have even happened from reading on this board) that I really didn't care if it was woo or not!

[Lawyer&Mom]

I absolutely react to high-histamine foods.  (And a bunch of other stuff too!) None of my doctors dismiss this.  Allergist has no problem saying: “Hey, this high-histamine food triggers you?  Avoid it!”  He also supports my anti-histamine regime.  I know that not all doctors understand or support Mast Cell Activation Syndrome, but don’t think reacting to histamines is itself controversial.  

[Katy]

11 minutes ago, skimomma said:

Where did you get this?  I thought it was pulled from the US market some time ago?

To the OP, it is not woo but who knows what a doctor will say?  I did not even bother bringing it up with mine since it would have to be controlled by my own actions anyway.  I do have to say after more than a decade of suffering with this, I was just so relieved to have figured it out (which I think might have even happened from reading on this board) that I really didn't care if it was woo or not!

It was temporarily pulled when a company bought the factory, but it was only for a few months.  It can also be extracted from pea sprouts grown in the dark.  You can buy both online again, I usually get it from Amazon bc free shipping.

[popmom]

Thanks, y’all. I’m in a rural area atm with spotty service, but I have follow up questions.

[kbutton]

Also, you might try a probiotic that doesn't increase histamine. I take s.boullardi (sp?). I take Thorne's version, but I've also used Florastor when it's on sale. Helps a ton with my gut issues that I know are MCAS related.

[popmom]

5 hours ago, kbutton said:

Also, you might try a probiotic that doesn't increase histamine. I take s.boullardi (sp?). I take Thorne's version, but I've also used Florastor when it's on sale. Helps a ton with my gut issues that I know are MCAS related.

Good to know! Florastor is actually what I bought when these symptoms started. Well, dh had to go buy it because I was (((that))) sick for awhile. Anyway, I need to buy more. I stopped taking it when my initial acute symptoms eased up.

Edited October 11, 2022 by popmom

[popmom]

Thanks for the input. I had been reading up online about it, and I was seeing so much conflicting information. Even the food lists were contradictory at some points. It was making me skeptical. It sounds like it's just not well understood. @Katythank you for the cookbook recommendation. 

I also plan to see my allergy doctor soon. It's been a year since my reaction to shrimp. He told me to come in whenever I was ready and we could do a challenge with mollusks(scallops).

Last night as I was pouring over info, I read about how shrimp are particularly bad about--I may be mistaken here--causing the body to produce too much histamine--even in a healthy normal person--so someone with an intolerance would definitely have symptoms. So what if my reaction was more related to histamine intolerance or mast cell stuff rather than an true food allergy. Maybe there's no difference. (I'm not taking any chances with shrimp regardless.) Sorry--I clearly have no clue about this stuff. Also sorry about the run on sentences! 

 

[Lawyer&Mom]

The food lists are not consistent, although people seem to agree on the main culprits (Spinach, tomatoes, aged foods etc.) Part of the issue is that not everyone with histamine intolerance reacts the same to the same foods. Some people are fine with certain foods that everyone agrees are “bad.”  Or maybe they can have small amounts, but only raw or only cooked… It’s wild.  What’s important is to figure out *your* triggers.  It’s also good to think about having a histamine “bucket.”  You can tolerate a certain amount of histamine, but react when your bucket is full.  So sometimes if your bucket is nearly full you react to foods that wouldn’t normally bother you, if you ate a small amount on an empty bucket.

Your point about shrimp is interesting.  I don’t have a shellfish allergy.  (I’ve been tested for almost everything, I don’t have any true allergies.)  But I never feel quite right after shrimp. Histamine makes total sense.

I really like the info on the mast cell 360 website.  I’ve never used any of her services, but she has good general info. https://mastcell360.com 

[Rosie_0801]

My histamine issues turned out to be side effects of candida overgrowth.

[popmom]

33 minutes ago, Rosie_0801 said:

My histamine issues turned out to be side effects of candida overgrowth.

interesting. hmmmm. I was on vacation for the past week. I indulge in sugar when I'm on vacation. I had dessert a few nights. And a Coke everyday at the beach. And cured meat. Some red wine. All the wrong things. Hoping a week of that isn't enough to trigger Candida, but I'm definitely going to be sugar free for awhile.

I didn't get sick until the end of the trip, but it was quite miserable. Pepto and fasting provided reasonably quick relief. Back home today, so I took a Benedryl and a Pepcid AC. 

[popmom]

I forgot to add why I'm even going down this rabbit hole. It's because I got a couple of hives the morning I was so sick. I get hives randomly (or maybe not randomly). Usually on my face or neck. 

[DawnM]

I hope they won't dismiss it.   I am realizing I have some severe histamine reactions to certain foods.   I can't have them.

[popmom]

28 minutes ago, DawnM said:

I hope they won't dismiss it.   I am realizing I have some severe histamine reactions to certain foods.   I can't have them.

me, too. I'm definitely scheduling an appointment with the allergy doctor after reading more. And I'll be having a colonoscopy. I'm overdue.

ETA:  Maybe I'll find out I have a parasite! Who knows? 

Edited October 12, 2022 by popmom

[Lawyer&Mom]

53 minutes ago, popmom said:

interesting. hmmmm. I was on vacation for the past week. I indulge in sugar when I'm on vacation. I had dessert a few nights. And a Coke everyday at the beach. And cured meat. Some red wine. All the wrong things. Hoping a week of that isn't enough to trigger Candida, but I'm definitely going to be sugar free for awhile.

I’ve been mostly sugar free, grain free and processed carbs free, and then I went crazy at a picnic and ate potato salad, potato chips and a sandwich on sourdough bread…. Candida ever since. It’s amazing how little sugar it takes if you aren’t used to it.  Also amazing how quickly you go back to craving sugar!

[popmom]

Just now, Lawyer&Mom said:

I’ve been mostly sugar free, grain free and processed carbs free, and then I went crazy at a picnic and ate potato salad, potato chips and a sandwich on sourdough bread…. Candida ever since. It’s amazing how little sugar it takes if you aren’t used to it.  Also amazing how quickly you go back to craving sugar!

Oh, no!!! I hate that for you! I am normally mostly sugar free, but I do eat grains. I hope you get the Candida under control quickly! 

[Katy]

The food lists differ because people’s microbiomes differ. You really have to experiment yourself with the produce. That’s because they trigger the body to release histamine rather than contain it, but many of them also contain some DAO to break down histamine. The aged animal proteins and pork seem to be universal for those with intolerance because they contain histamine.

I had a reaction to shrimp, googled it, and realized the shrimp was probably farm grown in Asia and fed antibiotics I was allergic to. So when I tried shrimp again I got some from the USA, wild, gulf-caught. I had no reaction. I forgot and had some in a restaurant, and broke out in hives again. 

Since I took that probiotic that got rid of my food allergies (anaphylactic to wheat and chia) I haven’t had that reaction even to restaurant shrimp. But I understand my allergies will probably come back when I need to take antibiotics. 

[katilac]

It's mostly affected by diet, correct? In that sense, it doesn't matter what the doctors have to say about it (there's not a prescription for it, etc). 

A gastro is generally going to support eating in a way that minimizes symptoms, so I think you'll have their support in that sense. You can certainly bring up histamine intolerance in case it's something they do have concrete suggestions on, but it really doesn't matter if the dismiss the idea - it's not like they can keep you from adjusting your diet. 

If you want more support/information/encouragement than your current doctors will give, you might consider working with a nutritionist as well (it can be done remotely if none are near you, and some of them even have specialties like automimmune, etc). 

I would also consider a naturopathic doctor as an adjunct to my standard healthcare. They are going to take a more holistic view and spend more time discussing and tweaking diet and environment. 

 

 

[klmama]

You will need to experiment to determine what works best for you. Some people are helped by taking DAO enzymes; others aren't. Pushing hydration is the key for others, as well as reducing stress, avoiding sugar, only eating food prepared at home, etc. If you are actually able to find a professional to help, count your blessings.

[kbutton]

12 hours ago, katilac said:

It's mostly affected by diet, correct? In that sense, it doesn't matter what the doctors have to say about it (there's not a prescription for it, etc). 

If a person has mast cell issues, there most definitely are medications (and supplements) that help stabilize mast cells. 

OP, the problem with the term histamine intolerance is not that it isn't real; it's that it's defined in a million ad hoc ways, and if you do have something mast cell related, it could be that you are triggered by something else to release histamine, not by the actual histamine in foods. (But if your histamine bucket is overflowing, histamine in foods can then also be additional triggers, and some people with MCAS have high histamine or histamine triggers.) On the other hand, identifiable (if not well understood) conditions such as MCAS do have some boundaries around them that let you learn about them and discuss issues with doctors. 

The group I recommend for learning more about this no longer has an active FB page, but there is an archived one, and that page has some spin-off local groups or subgroups on specific topics. It's Mast Cell Activation Syndrome Community, and they have a ton of educational modules available on the page.

[popmom]

@kbuttonthat helps me make sense of some of what I’m reading. I’m not at all convinced that this is the cause of my GI stuff, but I’m certainly keeping it on my radar. 
 

 

[kbutton]

4 minutes ago, popmom said:

@kbuttonthat helps me make sense of some of what I’m reading. I’m not at all convinced that this is the cause of my GI stuff, but I’m certainly keeping it on my radar. 

It could be many different things (and even nothing to do with food), but I feel like "histamine intolerance" is like saying "learning disability," and fiddling with a bunch of learning without figuring out which learning disability or what best practices apply can just muddy the waters. It can take you only so far, and you are concerned about getting traction with the doctor, so that's why I keep reframing the issue. At some point, we might have several more diagnoses to go along with MCAS, allergies, intolerances, etc. (or even to break down MCAS into separate diagnoses), and it will be clearer.

If you don't get anywhere with the doctor, by all means, try a bunch of stuff in some semi-systematic way. 🙂 

Best wishes!

[Kanin]

17 hours ago, Rosie_0801 said:

My histamine issues turned out to be side effects of candida overgrowth.

Were you able to get the candida under control?

[popmom]

16 hours ago, Katy said:

The food lists differ because people’s microbiomes differ. You really have to experiment yourself with the produce. That’s because they trigger the body to release histamine rather than contain it, but many of them also contain some DAO to break down histamine. The aged animal proteins and pork seem to be universal for those with intolerance because they contain histamine.

I had a reaction to shrimp, googled it, and realized the shrimp was probably farm grown in Asia and fed antibiotics I was allergic to. So when I tried shrimp again I got some from the USA, wild, gulf-caught. I had no reaction. I forgot and had some in a restaurant, and broke out in hives again. 

Since I took that probiotic that got rid of my food allergies (anaphylactic to wheat and chia) I haven’t had that reaction even to restaurant shrimp. But I understand my allergies will probably come back when I need to take antibiotics. 

Wait…I missed this before. What probiotic did you take? 

[Rosie_0801]

48 minutes ago, Kanin said:

Were you able to get the candida under control?

Still in progress, I think, but it's cleared up the worst of the symptoms.

[Kanin]

6 hours ago, Rosie_0801 said:

Still in progress, I think, but it's cleared up the worst of the symptoms.

Interesting! I'm fairly sure DH has this issue. Would you mind sharing what you did to help it?

[MercyA]

Just have a few minutes, but no, not woo. For years I had a problem with hives brought on by heat and stress. It got worse and worse and I was miserable for a while. What helped more than any antihistamines, prescription or otherwise, was switching to a very low histamine diet. 

ETA: If you don't get relief from Pepcid plus Benadryl, you can add Zyrtec or the generic version. I definitely needed all three at once for a time.

Edited October 13, 2022 by MercyA

[Rosie_0801]

21 minutes ago, Kanin said:

Interesting! I'm fairly sure DH has this issue. Would you mind sharing what you did to help it?

Just the usual stuff as others have mentioned on this thread. 
It wasn't that I didn't know how to eat properly. It was that I didn't have the prerequisites in place to be able to.
I'm relapsing at the moment, but that's life. Mine, anyway. I'll mend a bit more when I can.

[Katy]

13 hours ago, popmom said:

Wait…I missed this before. What probiotic did you take? 

Elixa.  4 courses of it.