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GiaK

Histamine food intolerance

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freespirit

I wasn't sure where to put this question, but since it's related to Histamine Intolerance, I thought I'd try here. I have a hip injury which does not seem to be healing and the specialist feels an MRI needs to be done. There's a question as to whether I have Avascular Necrosis of the femur or torn labrum. Labral tears apparently need the contrast dye to be fully seen. But because of the HI, I'd prefer to stay away from the dye. The dye that is used is a histamine liberator and can potentially cause anaphylaxis. Has anyone with HI had an MRI with contrast dye?

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Gurgle
On 3/27/2018 at 7:27 PM, GiaK said:

hey...since I got notified of the above quote I thought I'd let you know that I still don't tolerate probiotics much but I've found that if I just eat food that contains them once in a while I do okay. I do a small 8 oz cup of goats milk yogurt occasionally...(my body kinda knows when...if I eat it more than ONCE however I run into problems.) ... then I also drink Kavita (a probiotic beverage in the cooler section of health oriented grocery stores) I drink half and then another half about a week later and that is okay too....

 

the only strain of probiotic pill I tolerate is plantarum and I get the one made by swanson vitamins...L-Plantarum...I can take that several times a week without a problem.

 

that's all I do for the time being...maybe someday I'll be able to add more...don't know. I don't have to be nearly as crazy careful with food anymore but I still don't eat in restaurants...(except for the food bars like the ones in whole foods where all the ingredients are listed)

Hi Gia. Do you have a post somewhere where you offer advice on where to start with an antihistamine diet? I think this may be a big part of my problems. Gurgle

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GiaK

I have collection of everything I've ever written on histamine intolerance at this link

https://wp.me/p5nnb-8Lf

 

I generally avoid giving advice cuz only you can hear your body and what it needs and that's what we really need to learn how to do anyway. I don't even use a histamine intolerance framework anymore although it was very helpful for a long time.

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NorthStar

@GiaK and Others:

 

Thank you so much for starting and contributing to this thread. The information here about histamine and mast cell issues have really helped me, personally, understand my own drug side effect, withdrawal, and tapering journey.

 

I have two questions for folks:

 - It's the middle of a damp, hot, pollen- and mold-infested summer up here in the Midwestern US (thank you, climate change). My WD/dysautonomic symptoms are worsening as the season goes on (food is a component, but not everything - my ears and sinuses plug up when I walk outside among greenery). I find myself actually looking forward to colder weather. Has anyone's symptom's cleared a bit/improved come late-fall or winter (I suppose it would depend on triggers and location)?

 

- Does anyone have thoughts on when it's safe for an extra-sensitive individual to move back into a house that's had some work done? We're in the middle of replacing our windows (professionals are doing this - and are not living at the house while it's going on) and other house improvements. Painting will be involved; some by us. If I participate (I did the dining room earlier in the spring when I was better), I plan on wearing a filtered mask - but I'm wondering if people have any thoughts on how long to wait post-painting + cleaning (fancy HEPA vac, non-toxic cleaning products, mopping-mopping-mopping) before moving back in? And how do you folks manage keeping a low-allergen house when cleaning can aggravate symptoms?

 

Thanks, all.

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GiaK

I'm not sure how to answer your questions about the house. I personally have avoided doing that sort of stuff in our house for years now.

 

I get worse every winter...but that's me. I don't find this sort of comparison helpful ... we are truly all different and I've found that it's best to simply move forward one step at a time and witness my own journey. I learn more from doing that then comparing my experience with others who may be radically different than myself.... at this point anyway. It seems we all do the compare and contrast while we're finding our footing and that too seems like how we learn in the earlier stages. That said, it's easy to pick up fears and concerns that truly don't belong to us so I've largely cut it out.

 

may the new season bring you happiness and joy and lots of healing! 

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Onmyway

Northstar, as someone with chemical sensitivitis unrelated to WD, if you must paint, pls use non-VOC paint for everything. Chemical sensitivities for me are related to formaldehyde but not sure what yours are. It *might* be useful to get allergy testing done. It's a simple procedure on your skin (pollen, dog/cat, dustmites etc) though not sure about food allergies. A constantly running air filter might help as well but choose carefully the kind - you need HEPA at least (there are even better ones than HEPA) + carbon filter (for the chemicals).  These will be expensive - as in upwards of 200-300 quid. 

 

If you have that much mucus constantly in the house I'd worry about dustmite allergies or mold. Both are tough to deal with.

I used to wear an N95 mask when I went outside when the season was bad but my allergies were much more manageable - contained in a certain time period - than what you seem to experience. I am also sensitive to new furniture (formaldehyde) or fake wood flooring or new carpets. These sensitivities have been a nightmare for a long time for me. But I have managed to control my environment rather than take pills as most allergy pills don't work well for me and they don't work for chemical sensitivities anyway. Another tip that was very helpful for pollen allergies was to wash your hair when you come from outside as your hair holds lots of pollen. Or put a scarf on (like an old Russian lady). 

 

This sounds like an awful journey. Wishing you some respite soon. Good luck!

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NorthStar
58 minutes ago, Onmyway said:

Northstar, as someone with chemical sensitivitis unrelated to WD, if you must paint, pls use non-VOC paint for everything. Chemical sensitivities for me are related to formaldehyde but not sure what yours are. It *might* be useful to get allergy testing done. It's a simple procedure on your skin (pollen, dog/cat, dustmites etc) though not sure about food allergies. A constantly running air filter might help as well but choose carefully the kind - you need HEPA at least (there are even better ones than HEPA) + carbon filter (for the chemicals).  These will be expensive - as in upwards of 200-300 quid. 

 

If you have that much mucus constantly in the house I'd worry about dustmite allergies or mold. Both are tough to deal with.

I used to wear an N95 mask when I went outside when the season was bad but my allergies were much more manageable - contained in a certain time period - than what you seem to experience. I am also sensitive to new furniture (formaldehyde) or fake wood flooring or new carpets. These sensitivities have been a nightmare for a long time for me. But I have managed to control my environment rather than take pills as most allergy pills don't work well for me and they don't work for chemical sensitivities anyway. Another tip that was very helpful for pollen allergies was to wash your hair when you come from outside as your hair holds lots of pollen. Or put a scarf on (like an old Russian lady). 

 

This sounds like an awful journey. Wishing you some respite soon. Good luck!

 

Thank you so much, @Onmyway. Sensitivities are so tough, especially when your system is already overflowing w/ inflammation (the late, great Histamine Chef calls this the 'inflammation bucket'); I'm trying to attack this from all angles - food, cleaning products, household and outdoor allergens, etc. But I'm struggling. It sounds like you've built quite an arsenal of strategies! Thank you so much for the suggestions. I've become highly reactive to everything in the last couple weeks and couple/few months in general - not sure if it's the meds, the new house, stress; likely all three. We've been using non-VOC (or ultra-low-VOC paint) - or we did for the one room we've painted. And we'll do the same for any varnish (whether I do it or not; if I do, I'll have to wear that heavy-duty mask). I had the skin prick test done ages ago and was positive for tree pollen and one other thing (I think it was dust). They can do foods (they just did that for my son, who's allergic to peanuts and eggs, poor guy), but I'm not sure how helpful the test is if you have a 'sensitivity' or other inflammation (as I do), but I am no expert. Perhaps it's worth revisiting. We have 2 HEPA air cleaners, a HEPA vac, use special pillow covers, and I'm trying to clean regularly but it's really tough when you're in this state. And sometimes it makes symptoms worse. Last month, I tried using Clorox wipes (which I swore I'd never do, but it's supposed to help w/ lead dust - the reason behind the window replacement), and my hands started to peel and I was nauseous for days (later read it's recommended you avoid skin contact - c'mon Clorox). So it's soap, water, and vinegar - strictly no cleaning chemicals. I am really hoping the window replacements and other work being done will help - it's an old house. I've an appointment with someone who specializes in mast cell issues, but I might go back and see an allergist for a new skin prick test.

 

Thanks, again. Wasn't sure if this was the best place for this, but I just wanted some feedback on how sensitive folks have reduced their environmental allergens and how much it matters. I'm working on the food, and have just started using saline-only nasal spray, which has helped in the past.

 

Cheers to you.

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NorthStar
2 hours ago, GiaK said:

I'm not sure how to answer your questions about the house. I personally have avoided doing that sort of stuff in our house for years now.

 

I get worse every winter...but that's me. I don't find this sort of comparison helpful ... we are truly all different and I've found that it's best to simply move forward one step at a time and witness my own journey. I learn more from doing that then comparing my experience with others who may be radically different than myself.... at this point anyway. It seems we all do the compare and contrast while we're finding our footing and that too seems like how we learn in the earlier stages. That said, it's easy to pick up fears and concerns that truly don't belong to us so I've largely cut it out.

 

may the new season bring you happiness and joy and lots of healing! 

 

Thank you so much, @GiaK. Your words about comparison and not "picking up fears and concerns that truly don't belong to us" is brilliant (put that on a T-shirt!). I need to do a better job of that. It's tough when your own body is a moving target, as you know, and you're in the first stages of this and everything is so heightened - it's just reaction-panic-react, symptom-panic-react right now. I'm not sure where that line is between seeking advice and following my own lead, but I hope I can find it.

 

All best to you.

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GiaK

Looks to me like you're doing it.🤗

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gn11

recurring histamine sensitivity:  can it get better after finishing WD?

 

I developed histamine sensitivity when I went into  withdrawal after having eye surgery almost 4 years ago. I have been in a slow withdrawal from Celexa for about 3 years after many missteps. I have been in a low histamine diet for about 3 years  but lately I have had a recurrence of symptoms (maybe eating out too ofeten!) It is hard to know why. I am wondering whether anyone has been successful in eliminating or substantially reducing HI after being completely of ADs. I am now at .72 mg of Celexa and hope to be done this year.? Can anyone share how they proceeded as they got close to the finish line. I am wondering if my sensitivity could also be due to getting this close to 0.

 

I am familiar with dietetic approaches DAO and cautions about some strands of probiotics. Anything else that has worked?  txs

Edited by manymoretodays
added title, merged to existing topic

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manymoretodays

Hi gn11,

Have you seen this topic:  Histamine food intolerances

It might be helpful.

I'm just starting to study up on this as well, for myself.  I am just proceeding now, well after hitting the finish line. 

I think that GiaK may have been successful, and possibly Alto as well.  Take a look at that topic though, you'll see posts by both, and I think you might find some of the answers you are seeking.

I just know that we each really do have to learn........ to listen to our bodies, and attend to the ever changing needs post drugs/medications. 

Best,

L, P, H, and G,

mmt

editing in to add:  I don't really have any symptoms of Histamine overload/intolerance right now, that keep me from living a pretty good, functional life.  I feel very fortunate in that regard.

 

Edited by manymoretodays
merged with histamine topic, January 31st

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wanttosurvive

Hi gn11,

 

Yes, you can get better as time passes and as you recover. 

I have been through a harsh journey in terms of WD although I had received ADs only a couple of months. Now I am over 2 years off drugs. 

Last year I dealt with histamine intolerance. I used to avoid almost all foods that are high in histamine. I remember having severe anxiety attacks after eating just small amounts of yogurt... 

But for almost 6 months I do not have any sensitivity about histamine. But I must say that I have gastric disease, so I take famotidine regularly, which is Histamine2 receptor antagonist. But in those days I mean last year I also took the medicine. There is no change in the medicine schedule that I receive. 

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gn11

Thanks for the answer. I have been working on my histamine sensitivity for a while and know quite about diet, causes etc. However as I am getting close to my final drop (I'm at .72 mg of Celexa) I've been wondering if I'd get better or go away all together. Something I know is  that my sensitivity makes my sinus problems worse which in turn make my tinnitus worse for a while after I eat. In addition, post-menopausal women suffer from histamine sensitivity more of often than other groups due to higher estrogen in relation to progesterone. I was hoping that the end of my withdrawal could bring some end to these symptoms and improve my ability to eat things that I ate before .

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jazzmugz

I just want to share what worked for me, although it may seem a little extreme to many.

 

I had histamine intolerance for several years - horrific G.I. symptoms and seasonal allergies so bad my eyes would swell and gum up so that they couldn’t be opened. At first the symptoms could be reduced by taking Zyrtec daily. Then it moved up to 2 Zyrtec, sometimes more. Eventually no amount of antihistamines could help... almost every time I ate I would get red in the face and struggle to breathe. Even a cup of tea or piece of fruit would have this effect.

Finally cut out gluten altogether - I mean 100%, not just ‘mostly’. I’d tried reducing intake previously but saw no difference. Things started improving a lot for me after about 2mths. Keep in mind it might not be gluten that is doing the damage for you, but finding the main culprit(s) and eliminating that was enough to allow my gut to heal to the point I could have a meal without feeling like I was dying.

 

I was traveling a lot for work at that time (still do), so was regularly exposed to cross-contaminated foods which would make me sick again for several days. I decided at that point to try something more drastic - having seen some documentaries and done a lot of online reading I decided to try helminthic therapy. For those unfamiliar, this is where a person inoculates themselves with certain types of parasites, I.e. deliberately giving yourself an infection with a small controlled number of parasites. There is a lot more to the theory but basically these guys, which have adapted to living in the human gut, release immunomodulatory proteins which reduce inflammation.

 

About a year after my first 2 innoculations with Necator americanus (common name human hookworm) I intentionally ate a bowl of Singaporean rice pasta made with non-gluten free soy sauce... and nothing happened. It is more than 3 years since first starting with hookworms and my digestion has never been better, and seasonal allergies are non-existent. I don’t even avoid gluten anymore. The only things I still have to avoid are most types of preservatives; includes wine and cider which contain sulphites.


I never would have thought it at the time, but now I am actually grateful for the histamine intolerance. It forced me to learn so much about health, nutrition and to listen to my body, and now I have an infinitely healthier lifestyle which might never have happened otherwise.

Edited by manymoretodays
spacing for readability

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AlaskanGlacier

Anyone have this as well? It sucks knowing that fermented kraut, kimchi, kombucha, etc are so good for your gut and health/healing but can't use them now because they cause sxs flares. When I take some I get extremely agitated above and beyond normal for a day or two after... to the point it's too much to take. It really flares sxs for me at this point when it didn't previously as much. Histamine? I'm not sure, but if anyone has had similar issues please let me know.

Edited by manymoretodays
merged with histamine topic

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Junglechicken

I think I am back onto this bandwagon, lol!

 

Going to work with my naturopath to find out what's going on with my gut.

 

No doubt, some expensive tests to be done involving samples.

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manymoretodays

Hi Jungle!

And bummer!

All I really know is that I do really well, as long as I get my daily spinach, blueberry, cranberry juice, and greek yogurt blender concoction in.  Seriously.

I throw in some protein powder too.

I just switched from bone broth powder to whey protein, which seems to be going okay so far.

 

I haven't really had to go further than that.  Minimal symptoms for me I think.  Along the lines of sometimes more sneezing, dry and itchy skin, especially in the winter months that I have to attend to with good lotion(s).

 

I'm still sleuthing on what to avoid, as far as histamine goes though.

 

And had a blood test done last July that showed normal Histamine with a experimental blood assay.  I was right in the middle of the range.  Although.........I don't know anything about the accuracy of that test.

 

Good luck to you!

L, P, H, and G,

mmt

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Junglechicken
5 minutes ago, manymoretodays said:

Hi Jungle!

And bummer!

All I really know is that I do really well, as long as I get my daily spinach, blueberry, cranberry juice, and greek yogurt blender concoction in.  Seriously.

I throw in some protein powder too.

I just switched from bone broth powder to whey protein, which seems to be going okay so far.

 

I haven't really had to go further than that.  Minimal symptoms for me I think.  Along the lines of sometimes more sneezing, dry and itchy skin, especially in the winter months that I have to attend to with good lotion(s).

 

I'm still sleuthing on what to avoid, as far as histamine goes though.

 

And had a blood test done last July that showed normal Histamine with a experimental blood assay.  I was right in the middle of the range.  Although.........I don't know anything about the accuracy of that test.

 

Good luck to you!

L, P, H, and G,

mmt

 

Thanks MMT, lol!

 

I'm laughing at how absurd this has all become.  

 

Wow, you can get bone broth powder?!? I wonder if we can get that in the UK?

 

Anyway, no doubt I'll be back on this thread updating you guys.

 

Onwards, and happier gutwards 🤪

 

JC

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manymoretodays
1 minute ago, Junglechicken said:

Wow, you can get bone broth powder?!? I wonder if we can get that in the UK?

 

Yes.  It's become one of those latest rages I think. 

A bit expensive but I just did 1/2 of the recommended, which helped stretch it out for a whole month.

 

And yes, onwards!  (?Hail the Queen, and what about those Princes?)......lol, I shall get over to your introduction soon.  Good to see you back around.

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Junglechicken
8 minutes ago, manymoretodays said:

 

Yes.  It's become one of those latest rages I think. 

A bit expensive but I just did 1/2 of the recommended, which helped stretch it out for a whole month.

 

And yes, onwards!  (?Hail the Queen, and what about those Princes?)......lol, I shall get over to your introduction soon.  Good to see you back around.

 

Well, I was on a winning streak for a while in the minimal WD symptom department, and then it all went south after the holidays (boo hoo!).

 

It would be weird to say "its great to be back!", but hey, here I am, lol!

 

P.S Yes, just checked, we can get bone broth powder here, and yes, it is very expensive.

 

 

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Junglechicken

Something has set me off sneezing.  Haven't stopped since yesterday.

 

As its not allergy season yet, don't think I have a cold either, so I think its food-related: histamine intolerance.

 

No doubt all will be revealed once I finally get to see my ND.

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Junglechicken
On 8/1/2016 at 2:57 PM, Katch said:

Hello all, this is very interesting thread. I have just came across this on Dr. Mercola website - it was a comment from one of the readers: 

 

One way that bacteria in the gut can cause anxiety and depression is by releasing large amounts of histamine. The body then must use up B6 to make DAO, the enzyme that degrades histamine in the gut and extracellular space in the body(not within cells). When there is a lot of histamine, all or nearly all of the B6 may be used, leaving little or none for making serotonin, since B6 is essential for making serotonin and this makes the person feel depressed. Another route for getting rid of histamine is adrenaline, so the body also releases adrenaline, making the person feel anxious. If the person has the capability of making DAO, but doesn't have enough B6 then the answer is to take enough B6 to make enough DAO to get rid of all that excess histamine. This is what has happened to my son, and taking P5P, the activated form of B6, was like a miracle for him. (100mg of regular B6 didn't do much for my son, so if you try this make sure you take enough.) If you don't remember your dreams, that may be a sign that you need more B6. If you take B6 and get extremely vivid dreams, then back off.

 

Has anyone tried B6? Any ideas/comments?

Kat

 

Great explanation of what is going on - a chain reaction in our bodies!

 

Still waiting to hear from my NP.

 

Awful blocked sinus headache, and unwell feeling.

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Junglechicken
On 1/28/2020 at 2:25 PM, AlaskanGlacier said:

Anyone have this as well? It sucks knowing that fermented kraut, kimchi, kombucha, etc are so good for your gut and health/healing but can't use them now because they cause sxs flares. When I take some I get extremely agitated above and beyond normal for a day or two after... to the point it's too much to take. It really flares sxs for me at this point when it didn't previously as much. Histamine? I'm not sure, but if anyone has had similar issues please let me know.

 

Classic paradoxical situation which is what WD is all about.

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Junglechicken
On 6/25/2016 at 11:16 AM, btdt said:

copies from the mensteral cycle thread.. I just put it here in case it can help somebody

 

http://www.histaminintoleranz.ch/de/histaminose_dao-abbaustoerung.html#daoblocker

 

you will have to translate the above site to read this further down the page you will find other causes histamine is not working properly... could be caused by damage to the gut or low... DAO 

 

 

Hormonal disorders

A more advisable out of balance hormones can cause or contribute to histamine problems. The biggest role is played here probably the estrogen (female sex hormone), which is not the absolute amount of estrogen, but the ratio of estrogen relative to certain other hormones (progesterone, testosterone) is crucial. Women are affected more often than men thereof.

The disturbances in hormone levels include:

  • Female Cycle (Menstruation)
  • Hormonal birth control (contraceptives, birth control pills)
  • Menopause (climacteric)
  • puberty
  • Estrogen dominance (or progesterone or testosterone deficiency)
  • Hormones and hormone-like substances in natural foods (eg estrogen in hops and beer)
  • Endocrine pollutants: Substances (unintended) of hormone-like effect in everyday products such as plastics, sun creams etc.
  • (Possibly hormones as growth promoters in animal production?)

Evidence of an association between histamine and hormones: 
From HIT are affected significantly more women than men and the disease often occurs with the onset of menopause on [ Jarisch 2004 ]. 
The intensity of histamine problems is the female cycle dependent (menstrual pain as histamine symptom) [ Jarisch 2004 ]. 
the symptoms of histamine-sensitive people may deteriorate (hormonal contraceptives) depending on individual hormone status or improve when taking the pill. 
During pregnancy, the DAO-level rises by approximately 300 times to the uterus and the embryo before histamine to protect. This has the result that during pregnancy allergies and other histamine problems usually temporarily disappear [Maintz et al. 2008 , Jarisch 2004 ]. Increasing the DAO-production at the beginning of pregnancy is regulated by estrogen [ Liang et al. 2010 ].

The complex interactions are understood not enough. A mechanism could be: For the breakdown of estrogen Vitamin B6 is needed. If too much excess estrogen must be dismantled, the diamine is (DAO) is no longer enough vitamin B6 for the breakdown of histamine available. Conversely, appears to influence the hormone balance and the histamine levels. Apart from the DAO are other places in histamine metabolism hormonal influences (eg can be stimulated to mediator release via estrogen receptors on the membrane of mast cells this).

 

I am not the brainiak I wish I were... but for me B6 makes me so depressed I can't lift my head... P5P helps.  B5 it is sometimes called. 

If this is in part a histamine issue... B1 helps me think and you can read about the conflicting reports I have found on B1 lowering or raising histamine.  

All I know is when I cannot think B1 helps me I came to it by accident comparing cereals... All Bran sticks has a lot of B1 All Bran round things doesn't... All bran was a staple for me in wd once I found it .. I did not leave home without it... I tried the round bits of All Bran it failed me.. back to sticks.  Over time I stopped eating it.. as I thought it was just helping my digestion and that improved... it was not until I did he comparison for another person here at SA that I noticed the sticks had more B1... so I looked up B1 ... and bought some B1... I later learned B1 lowers histamine... important now as I am having allerigic type reactions to many things including drugs it is getting increasingly worse.

Symptoms and Signs. Early symptoms are nonspecific: fatigue, irritability, poor memory, sleep disturbances, precordial pain, anorexia, and abdominal discomfort. Dry beriberi refers to peripheral neurologic deficits due to thiamin deficiency.

These drugs change our guts we may well have lack of B1

 

I think this is what has happened to me.

 

Since having the coil fitted, my gut function slowed right down, and then beginning of Jan 2020; BAM! My gut issues started.

 

Initially IBS type symptoms, chills, headaches, anxiety and depression (see my signature).

 

Latterly, sneezing, itchy and watering eyes, after eating certain foods, palps, awful reflux that won't go away, including having goop/mucus in my throat.

 

Looks like hallmark histhamine intolerance to me.

 

I reckon that damn coil triggered the hormone imbalance, which in turn clashed with WD and what do you get?

 

Nasty gut issues and multiple food intolerances.

 

 

 

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cmm1180

I am reacting to every food I put in my mouth. EVERYTHING but water. I am losing tons of weight and do not know what to do. Any guidance?

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Gurgle

cmm1180. I had this too. It was horrendous. Stomach pain, psychological pain, all over body aches, non epileptic seizures, coughing up copious amounts of phlegm just from eating for months. I lost 2 stone within a few weeks. Try to stay away from high histamine foods (tomatoes, citrus, sausages ... See lists online but don't go ocd on focusing on that). I got some vitamin shakes from the chemist for a time (suggested to me by someone else) which helped a bit. I know on this site they don't recommend taking medication but I was told to take promethazine , 25 mg 4 times a day during peak of withdrawal. It took a couple of months but I think it helped to stabilise my histamine system- don't think it would have happened without the antihistamine.i am now down to 3/4 of a promethazine. I am gluten free too , from before withdrawal and that isa massive trigger for severe issues. I am now also practically dairy free and extremely limited on added sugar. I tried to log which foods would trigger but it made no sense as it seemed to be everything but you have to eat. I wish you well. It will get better. 

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cmm1180

Okay this is beyond me....everything I put in my body makes me dizzy, feels like my head is rocking internally, heart rate rises, feels like my internal temperature is higher (like I have a fever), lips burning. I am struggling to get 200 to 300 calories a day in. Is this a true intolerance or is this anxiety driven. Seems like I have gastroparesis as well because it takes 3 or more hours for this to settle down after I eat anything and my stomach gurgles with every bite I put in my mouth. I cannot take any vitamin drinks or electrolyte drinks as they make me beyond dizzy and even worse symptoms. Anyone ever have anything like this? I don't know what to eat from day to day as it seems that things that seem to be okay one day are triggering the next day. Please help if you can. 

@Altostrata

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Altostrata

I'm not an expert on digestive disorders. It may be you want to go on a very mild diet for a while, even a liquid diet. Maybe make smoothies from fruits you can eat? Please read this topic from the beginning.

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Gurgle

I couldn't eat for a longtime when at my worst. I was put on 4 X promethazine 25mg per day . I think over a couple of months this helped to stabilise my histamine system. I have ordered some migrasin ( Dao- there are other versions) which is the enzyme that breaks down histamine to try ; I wonder whether this would have helped back then. It will settle down. I lost two stone over a month and kept reacting to foods. I hope things settle quickly for you. You could try avoiding high histamine foods. It could be histamine intolerance/ mast cell issues. 

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cmm1180

Unfortunately, it's not an option to take any medication. I have been off for 2 years, was doing well and a dose of baby tylenol put me into worse withdrawal than I previously had. And, antihistamines have always been a no go for me even before this. I have a heart arrhythmia and they put me in the hospital. I had some intolerance to food last time but it settled down within a month or so and I did not have gut motility issues. I have been trying all low histamine foods and I still react to them. It's like my body wants no food at all. I have already already lost 15lbs and losing more every day. I am going to try acupuncture for the gut but past that I hope it settles down soon. If it were just stomach pain or things like that it would be manageable but as of right now I get high body temps, vasovagal issues where my blood pressure drops severely and I feel like I am going to pass out, high heart rate, burning lips, and unbelievable anxiety to where I am shaking. I am making all my food into a baby food consistency to see if that helps. And I will see if the acupuncture helps. Thanks for the responses. 

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Gurgle

This sounds awful. So sorry. I had similar issues. My heart would palpitate, tongue would burn, gut would spasm, I would cough up phlegm repeatedly for about half an hour and have non epileptic seizures, pressure in my neck and total mental torment etc. It is a shame antihistamines won't work. I wonder if Dao would be different as it is an enzyme; not sure if you have looked into this but imagine it would be too worrying to try. I hope the acupuncture helps you asap. I am not sure what else to suggest. Sorry. 

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gn11
On 4/30/2020 at 8:09 AM, cmm1180 said:

Unfortunately, it's not an option to take any medication. I have been off for 2 years, was doing well and a dose of baby tylenol put me into worse withdrawal than I previously had. And, antihistamines have always been a no go for me even before this. I have a heart arrhythmia and they put me in the hospital. I had some intolerance to food last time but it settled down within a month or so and I did not have gut motility issues. I have been trying all low histamine foods and I still react to them. It's like my body wants no food at all. I have already already lost 15lbs and losing more every day. I am going to try acupuncture for the gut but past that I hope it settles down soon. If it were just stomach pain or things like that it would be manageable but as of right now I get high body temps, vasovagal issues where my blood pressure drops severely and I feel like I am going to pass out, high heart rate, burning lips, and unbelievable anxiety to where I am shaking. I am making all my food into a baby food consistency to see if that helps. And I will see if the acupuncture helps. Thanks for the responses. 

I hope you are doing better...I've had histamine reactions of different magnitudes the last 4 years. One thing I tried was the probiotic: probiota histaminix...it helped some! I am having problems again as I am coming to the end of my taper and made to a steepo cut this past month. I am making food and freezing it. Broccoli, beans (if you can tolerate them), corn muffins. The symptoms you describe are similar to what I experience a few years ago. Now my symptoms are milder through diet mostly. One thing I found out was that any kind of emotional stress made things worse so I had to quit working eventually I used a stress reduction acupuncture protocol for about a year and it was very helpful.

 

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tsranga

Interesting thread.. 

 

Looks like the consensus is that in withdrawal, there are symptoms of histamine intolerance / mast cell activation. Has anyone confirmed this with tests? I know this can be very difficult to test for.

 

Last year I had terrible symptoms and I thought I was making a recovery in the fall and winter, only to have a milder relapse starting April. So it does seem that environmental allergens in spring/summer coupled with food intolerance, can drive up histamine due to mast cell activation. 

 

I have found that I really don't have an actual food intolerance, but when there is an overload of triggers that increase histamine, i have symptoms (orthostatic hypotension, hot ears/neck, facial/head pressure/vasodilation, burping, gas, hand/feet neuropathy). Fortunately, they have been well managed so far, but the worst is when the body is stuck in a histamine/adrenaline release when trying to fall asleep. This is the worst at night (mast cells have a circadian rhythm and are most active 12-5am) and I usually have to wait it out for a couple of hours if I am lucky, or go without sleep that night. Thankfully at 18 months off mirtazapine, this happens 1-2 times a month.

 

I have been having a supplement called tinospora cordifolia which has helped calm down most symptoms, as long as I watch my diet and avoid high fodmap foods, or at least space them out over a week, and in moderation.

 

I hope that the nerves stabilize over time based on the progress from last year.

 

I found this link that may be useful - 

https://www.botanicalmedicine.org/herbal-approach-to-mcas-and-histamine-intolerance/

 

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