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Iiv

Diamine oxidase deficiency in untreated celiac patients

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On 7/3/2019 at 4:41 AM, Iiv said:

Today I received a letter claiming that I have histamine intolerance. This I will not buy because I can eat tons of histamine rich foods and will not exclude anything from my diet unless I feel ill. 

 

On 7/3/2019 at 8:47 AM, Iiv said:

Yes, I'll eventually get some myself too. DAO definitely explains a lot of the weird symptoms I've had when being glutened, like blackouts apparently. 

Celiac disease can all sorts of different health problems. I don't think you have ruled out all of these possibilities. DAO deficiency, although it maybe possible, is just one possibility among many. Like alcohol consumption naturally causes withdrawal/hangover symptoms including headaches. Some people may be more sensitive to these things than other people. 

Headaches are linked to stress, IBS, food allergies, other food sensitivities and vitamin deficiencies. A whole foods, healthy, anti inflammation or an elimination diet could still be useful. 

Baking soda effects stomach acid production, and there is actually evidence that it can help reduce inflammation. 

I think some MTHFR variations are more important than others, but I don't think that in general MTHFR has much effect on peoples health.  There is a lot of information online but a lot of it is very speculative and unreliable. This is all my non-medical opinion.

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"The reason the Imitrex triggers your histamine storm is MAO/DAO shares the same pathway."

Huh? Imitrex seems to counteract the effects of histamine storms I'm thinking. It takes away a migraine which can be triggered by high histamine levels.

Imitrex is a vasoconstrictor. Most medical people feel migraines are brought on by dilation of the blood vessels supplying blood flow to the brain.

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Posterboy, I did not see in this link you provided any mention of a connection between tryamine and histamine storms.

"But my bet is on Tyramine ....it is connected to a histamine storm.

Here is a nice Webmd article on it.

https://www.webmd.com/migraines-headaches/tyramine-and-migraines#1"

Did I miss something?

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12 hours ago, trents said:

Posterboy, I did not see in this link you provided any mention of a connection between tryamine and histamine storms.

"But my bet is on Tyramine ....it is connected to a histamine storm.

Here is a nice Webmd article on it.

https://www.webmd.com/migraines-headaches/tyramine-and-migraines#1"

Did I miss something?

Trents,

I did post the link and the text in the response it was the sciencedirect link

https://www.sciencedirect.com/topics/nursing-and-health-professions/tyramine

it is the top left article entitled "MIGRAINE AND DIET" there it established how tryamine triggers "histamine storms'' my words.

see also their bottom right article on Physciatry note their important notes:

"MAO-A in the gut breaks down tyramine, a chemical that stimulates the release of norepinephrine. .... Ingestion of these foods leads to increased tyramine, and because its breakdown is inhibited, there is increased norepinephrine release, leading to hypertensive crisis."

once the tyramine build up starts above it a certain level a migraine is triggered.

from their migraine and diet article about this topic. quoting

"A dose of 10 mg tyramine has been associated with migraine onset;  A dose of 10 mg tyramine has been associated with migraine onset; however, levels of 6 mg can cause migraine in patients under treatment with MAO inhibitors."

Imitrex is a MAO inhibitor right? and why you said Imitrex always triggers a migraine...I thought you said in another place.

the question is what relieves the pressure build up of tyramine before it triggers an overload of histamines.... and why diet/food high in tryamines can trigger headaches in some people.

the link seems to be associated in those who have SIBO ...because it can trigger a break in this normal healthy cycle.

Riboflavin resets the cycle so it functions normally.

see this resource from a nutritionist.

https://www.integrativepro.com/Resources/Integrative-Blog/2016/Many-Effects-of-Histamine-Neurotransmitter

the FAD cofactor regulates DAO build up through tryamine in the body.

this from their note the histamine pathway. quoting

"The extracellular histamine pathway is used to degrade histamine in the gut whereas the intracellular histamine pathway degrades histamine in the rest of the body. Regardless of pathway, the enzyme DAO (requiring the riboflavin derived cofactor FAD is required. SNPs to DAO therefore reduce histamine tolerance. SNPs to other enzymes in the pathway or insufficiency of required cofactors may also influence histamine breakdown."

when FAD cofactor is absent tryramine triggers the histamine storm.

the use of vitamins (Riboflavin) is an approved compliementary treatment for Migraines.

see this research entitled "Evidence-based guideline update: NSAIDs and other complementary treatments for episodic migraine prevention in adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3335449/

sometimes I get a little too deep in the weeds. ....but you have to understand it for yourself before you explain it to others.

concerning riboflavin (they have a whole list of things) they say that can help

"Riboflavin. In the original guideline, 1 Class I trial reported riboflavin to be superior to placebo, suggesting probable efficacy for migraine prevention."

but as with most good research they almost never say it causes migraines ....just it is better than something else or it only associated with migraines ...and why I only usually say SIBO is associated with migraines etc...

this discussion has (of whether vitamins) helps us has been going on for 50+ years.

but I believe Vitamins are what they (the  medical profession) says they are ....Vital things we need in Minimum amounts...the same way we have 10 essential amino acids....life is not possible without them.

Trents here is the first study I found about this effect of how vitamins help treat histamine keep balance issue in the body....when doctor's still studied vitamins instead of medicines.

https://www.sciencedirect.com/science/article/pii/S000293944990375X

but I think because vitamins are not studied today much by medical professionals today' there is just not much understanding how they work anymore...today you ask a nutritionist or naturopath because that is what they study.  Doctor's study medicine's instead...for drug interactions like what an happen when you take two together etc.

Also here is FAQ page on the DAO you bought that will test you best how to take it.

https://histamine-sensitivity.com/dao-what-you-need-to-know-08-16.html

Note: about the Imitrex I was confused I thought it was MAO not a SSRI and why Imitrex should not be used with an MAO. the warning was to not use the SSRI with another MAO because for these reason(s) noted above it/could/would cause critically high blood pressure episodes.  Foods with high Tryamines (cheeses) can cause the same effect because the tryramine effects the release of MAO/DAO. ...as I understand it.

I hope this this is  helpful but it is not medical advice.

 Posterboy,

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Posterboy, sorry if there was confusion about what I said regarding Imitrex. To be clear, for me, Imitrex is an effective antidote for migraines. Works best if I take it at the first signs of headache coming on but if I wait longer it still works well but takes about 45 minutes to begin working.

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I'm still not seeing it in those links. The connection between tryamines and histamines, I mean. Are you equating them?

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trents,

I think I might of been mistaken.  I was basing it on the integrative pro histiamine pathway chart.

https://www.integrativepro.com/Resources/Integrative-Blog/2016/Many-Effects-of-Histamine-Neurotransmitter

Histamine Pathways as neurotransmitter

image.png.d858bc2c9dbcd1286b90e297cb2734c8.png

The extracellular histamine pathway is used to degrade histamine in the gut whereas the intracellular histamine pathway degrades histamine in the rest of the body. Regardless of pathway, the enzyme DAO (requiring the riboflavin derived cofactor FAD is required. SNPs 

The show both being degraded by the FAD cofactor derived from Riboflavin.

DAO is the form of Histamine in the gut the MAO is the form in the brain.

The Imitrex works because Serotonin is a MAO (Monoamine) but because no ever refers to it by that name no one knows it is MAO.

the histamine sensitvity site has a good article on how tryamine and histamine are related I will quote from their discussion about their connection.

https://histamine-sensitivity.com/histamine-tyramine-similaraties-10-12.html

"Histamine is broken down by two different enzymes: histamine N-methyltransferase (HNMT) and diamine oxidase (DAO).  DAO is mainly responsible for ensuring that excess histamine in the diet is degraded within the digestive tract before it can enter the body.  It also acts as a “scavenger” within the body to reduce the amount of unnecessary histamine circulating in blood and tissues.

Tyramine is degraded by monoamine oxidases (MOA) of which there are two subtypes, MOA-A and MOA-B.  Usually tyramine in the diet is broken down (metabolized) by MAO-A in the intestinal wall and then in the liver.  This destroys excess tyramine before it can be absorbed and enter circulation, where it is converted into norepinephrine."

I also recommend this site for doctors' that explains more  about histamine intolerance well.

https://www.clinicaleducation.org/resources/reviews/histamine-histamine-degradation-and-histamine-intolerance/

they explain what it (DAO) is and how it regulates histamine in the gut.

"Diamine oxidase (DAO), also known as histaminase, is the main enzyme responsible for the metabolism of ingested histamine.

and that both DAO/MAO both rely on vitamin Co-factors to work properly.

"Vitamin cofactor deficiencies – enzymes, like DAO and MAO rely on vitamin co-factors and deficiencies of these can also cause abnormal enzyme activity"

And in part with SIBO is one of the man reason people develop histamine intolerance in the first place.

try taking your B-complex as an enzymic B-vitamins and with meals for a couple months ...i think your notice a difference after a couple of months.

As always I hope this is helpful but it is not medical advise.

Posterboy,

 

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Trents,

I forget this Webmd article about this topic.

These connections were  not established until the drugs were already on the market. ...imagine that.

People were reporting migraines with these drugs ....and now drug interactions is a common cause of ER visit's today.

https://www.webmd.com/migraines-headaches/qa/how-did-scientists-find-the-link-between-tyramine-and-headaches

I hope this is helpful but it is not medical advise.

Posterboy,

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*puts on waders*  :D 

how about something fairly simple?  try keeping a food journal, and see what food combinations are making you feel bad.  then, either eliminate them (which I did for awhile, then added them back, but not combined with any other suspect foods) or rotate them in your diet.  I do about a 3 day rotation and it seems to keep the histamine levels in check.  I also do my h1 & h2 daily and nasalcrom pretreat for meals, Xanax as a stabilizer - you may want to experiment what combinations will work best for you individually.  the food rotation was a very critical part of the whole mess, as I was eating something one day with no ill effects, the next day I would eat exactly the same thing and my guts would go crazy.    

it's not one size fits all and you may hafta skip some stuff altogether (I only eat chocolate at the house, lololz)  or give it a rest for awhile (red wine is the devil I feel ya, trents!  no more migraines for me since I have been gluten-free, though!)

good luck!

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I have recently begun a three day rotation of breakfast foods and supper variation takes care of itself. I sometimes get in a rut with lunches (Kirkland protein bars and I ate all the oatmeal ones and now on the dark chocolate ones, unfortunately). Doing in a turkey cheese sandwich for lunch every two to four days. Haven't had a migraine of late.

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On 7/13/2019 at 4:39 AM, ch88 said:

I don't think you have ruled out all of these possibilities. DAO deficiency, although it maybe possible, is just one possibility among many.  

 

I don't think I have ruled out all possibilities, since dao deficiency is the only thing they've stated as a fact this far, together with some autoantibodies towards gluten. 

My DAO deficiency is measured at a hospital, so I believe that it may be possible. As I understand it, this falls under some kind of general food intolerance or pseudo allergy, because I cannot break down enough biogenic amines. Which are found in all foods that contain proteins. It can be primarily or secondary like lactose intolerance. The difference is that lactose doesn't enter your bloodstream, and it's not hormones that your body uses for a variety of things - like regulation of body temperature. Excessive histamine is usually one of the major causes for symptoms in allergies, it's what sets the reaction off. if you have DAO deficiency then you more or less always have an excess of histamines running around your body.. unless you control it well enough with food or block the symptoms with medication. 

The symptoms resembles a proper food allergy and/or food poisoning. If way too much biogenic amines you feel like your body is about to give you up - and that you are actually ready to let go.  

It's not at all nice, I would prefer stomachache or GERD. I hope it's secondary, but I am accepting it. I know I've had symptoms all my life. Hopefully I will be further examined, because it's as you said perhaps not the entire picture. 

Image shows a screen shot where the difference becomes clearer. Top left DAO deficiency, bottom left food allergies. Bottom right healthy controls, top right sensitivity without a known cause. From: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5947167/#!po=36.7188

Screenshot_20190707_184016_com.android.chrome.jpg

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18 hours ago, notme! said:

*puts on waders*  :D 

how about something fairly simple?  try keeping a food journal, and see what food combinations are making you feel bad.  

Thanx. Keeping a food journal doesn't seem easy enough though 🤣😅

But I'll try a similar version. To find "safe" food to comfort with when to high. 

And will probably become addicted to H1 n h2 blockers. How long have you been on them? 

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Here is my two cents.  If you have had a positive celiac antibodies test, you should be referred to a Gastroenterologist for further evaluation (biopsies via endoscopy).  Untreated celiac disease will most likely not let your body resolve any allergy/DAO/Histamine/Mast Cell issues.  Treating those without treating celiac disease is useless in my non-medical opinion.  

Why?  My Mast Cell issues resolve or calmed down significantly once I healed from celiac disease.  I maintain a strict gluten free diet and take few risks to prevent celiac disease flare-ups which in turn activates my other autoimmune disorders and Mast Cell issues.  I have standing orders to get tested for Mast Cell Activation at my ER, but I have not needed to do so two years.  No more attacks!  I also no longer need to be on a cocktail of antihistamines prescribed and monitored by my allergist (board certified MD).  

Try to find the root cause of your problems which may be untreated celiac disease.   The suggestion of a journal is also a good one as it helps identify food intolerances, stresses in your life, etc.   Good luck!  

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7 minutes ago, cyclinglady said:

 Why?  My Mast Cell issues resolve or calmed down significantly once I healed from celiac disease.  

Try to find the root cause of your problems which may be untreated celiac disease.   The suggestion of a journal is also a good one as it helps identify food intolerances, stresses in your life, etc.   Good luck!  

I love to hear that your mast cell issues are under control!!!! 

Im dreaming to be able to keep things under control once healed too, this is inspiring. 

Unfortunately I'm a bad, bad patient.. and went on a strictly gluten-free diet nearly a year ago. I felt unheard and was in a very poor shape, and became terrible ill from tiny mistakes. My blood test was taken after 9 months on a GFD. 🙈. (no additives derived from barley or wheat.. I aim for no more than 0ppm)

They're not fast to call me in for a biopsy. Hence I'm considering to skip it. Or I'll be overdosing on histamines while eating gluten. 

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My friend used to have severe migranes and was greatly helped by magnesium supplements.  CALM powder by Natural Vitality is the one her doc recommended and it is gluten-free.

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5 hours ago, Beverage said:

My friend used to have severe migranes and was greatly helped by magnesium supplements.  CALM powder by Natural Vitality is the one her doc recommended and it is gluten-free.

Thanx, good to know that there's a nice gluten-free brand. I personally don't have migraines, but magnesium helped me out with muscle cramps. I will check it out. 

I only have a headache... And probably all other symptoms of histaminosis... Hypotension, low body temperature, tingling, itchiness, fainting, shivering, convulsions, nosebleeds, fatigue, excruciating osteopathic pain (it feels as if the bones are about to shatter) , soft tissue pain, muscle pain, nerve pain, pain in abdomen, chest pain, PMS, dizziness, nasal congestion, hoarseness, sore throat, difficulty swallowing, confusion, forgetting to breathe even when "awake", shortness of breath, nausea, satiety, vomiting, bloating etc.  

Most of the symptoms are similar to celiac disease and other issues. I probably need to figure out what belongs to what, and to which extent. Or just keep levels down and hope that the reactions will become milder. 

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whoops!  slam on the brakes!

you are an untreated celiac?  that's KIND OF A THING.  (that I completely missed, thank you cyclinglady)  you need to eat strictly gluten free to even begin to unravel your issues.  -  it's like:  step one  ;) they may resolve themselves once you are eating to heal yourself.   

lolz, food journal too hard?  use the app 'my fitness pal' and I believe it has a note section where you could put how food is affecting your guts/etc

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2 minutes ago, Iiv said:

I only have a headache... And probably all other symptoms of histaminosis... Hypotension, low body temperature, tingling, itchiness, fainting, shivering, convulsions, nosebleeds, fatigue, excruciating osteopathic pain (it feels as if the bones are about to shatter) , soft tissue pain, muscle pain, nerve pain, pain in abdomen, chest pain, PMS, dizziness, nasal congestion, hoarseness, sore throat, difficulty swallowing, confusion, forgetting to breathe even when "awake", shortness of breath, nausea, satiety, vomiting, bloating etc.  

many of these things could clear up on a gluten-free diet and can be attributed to untreated celiac - give it a try, maybe cut your current symptoms in half?

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Liv,

I try and be short for me anyway.

Taking DAO will/can your Histamine issues. Here is nice article summary about it.

https://alisonvickery.com.au/dao-deficiency/

It (DAO deficiency) is common in SIBO due to inflammation.

This link has a quick summary of why inflammation interferes with DAO production.

https://sibodiaries.com/2019/05/30/the-histamine-and-sibo-connection/

quoting there very good summary I will quote a longer work at the end that explains not only what is happennning but why?

"Why SIBO can lead to high histamine levels in the gut?

Inflammation and intestinal permeability in the gut can cause an overactive immune response and an increased release of histamine

Bacteria can produce histamine. You could have an overgrowth of bacteria that produces histamine leading to higher histamine levels.

Diamine Oxidase (DAO) is an enzyme that breaks down histamine. It is produced in the small intestines. Inflammation and damage can hinder the production of DAO enzymes. With an inability to break down histamine, your histamine levels will rise.

MAST cell activation disorder occurs when the mast cells unstable and release histamine chronically. There is a strong connection between MAST cell activation and SIBO."

And here is the long version it is very exhaustive...I am known to go lonnnnnnnnnng sometimes but they have beat even me............which can be hard sometimes.  read to your hearts continent but I recommend finding a search form and search for LPS/DAO/or just SIBO to quickly browse the summaries.

https://www.naturalmedicinejournal.com/journal/2017-05/takeaways-2017-integrative-sibo-conference

I hope this is helpful but it is  not medical advice.

Posterboy,

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Liv,

Here is another nice overview on SIBO and prevalence in Celiac's.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

I thought it was very striking how many Celiac's symptom's got better (among those still suffering)...not their Celiac but their symptom's.

Here is their paragraph on the connections of SIBO in Celiac's.

"Celiac Disease

Long-standing celiac disease can disturb gut motility, leading to small intestine dysmotility.48 A study of 15 celiac patients with persistent symptoms despite adherence to a strict gluten-free diet found that 66% had bacterial overgrowth on lactulose breath testing.49 All of these patients noted a resolution of their symptoms after being treated for bacterial overgrowth."

You might still be suffering from SIBO because the doctor's don't know to look for it....yet.

You can read it when you get the chance but the comorbidity of SIBO in Celiac's is high and should not be ignored in those Celiac's still suffering especially in those with a DAO deficiency.

I hope this is helpful but it is not medical advise.

Posterboy,

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1 minute ago, notme! said:

many of these things could clear up on a gluten-free diet and can be attributed to untreated celiac - give it a try, maybe cut your current symptoms in half?

Notme! 

I am on an extremely strict gluten free diet. The story is that I quit myself. And 9mts later had a slightly positive tTG-IgA result.  

But the celiac test was made together with a lot of other tests, because I felt as if it couldn't be just gluten or wheat. I became hypersensitive, had to keep my glutenfree to a maximum of 0ppm. Which didn't seem right. I was jealous...perhaps.. 

I had to find someone willing to run tests. That was difficult. 

But I'm not diagnosed with celiac since I haven't done a biopsy.. Don't even know if I can eat enough gluten for that. I have some IgE towards wheat too... Which I assume is the cocktail to my hypersensitivity towards cereals; ige + ttg-IgA + dao deficiency = no traces or chaos. 

My treshhold for gluten/cereal was that found in ONE vitamin pill containg dextrin derived from barley. Another one the next day was too much. It just wasn't fair. And doesn't seem right. 

The new thing after ditching gluten is the pain in my stomach. I hardly ever had stomachache. It's as if I was numb and not anymore. 

And then I couldn't eat things like potassium sorbate, it didn't really fit celiac. Maybe DH..?

I couldn't fit in the intolerance towards meat and sugar either, but those were old issues. 

I did not know that I was tested for enzymes too. It was a sad surprise realizing that my intolerance was caused by proteins. All food. Pretty much everything but water could tip the scales. "go ahead, enjoy your yolks with cucumber for the rest of your life" sort of. The lists are horrible. 

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13 minutes ago, Posterboy said:

Liv,

Here is another nice overview on SIBO and prevalence in Celiac's.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

I thought it was very striking how many Celiac's symptom's got better (among those still suffering)...not their Celiac but their symptom's.

Here is their paragraph on the connections of SIBO in Celiac's.

"Celiac Disease

Long-standing celiac disease can disturb gut motility, leading to small intestine dysmotility.48 A study of 15 celiac patients with persistent symptoms despite adherence to a strict gluten-free diet found that 66% had bacterial overgrowth on lactulose breath testing.49 All of these patients noted a resolution of their symptoms after being treated for bacterial overgrowth."

You might still be suffering from SIBO because the doctor's don't know to look for it....yet.

You can read it when you get the chance but the comorbidity of SIBO in Celiac's is high and should not be ignored in those Celiac's still suffering especially in those with a DAO deficiency.

I hope this is helpful but it is not medical advise.

Posterboy,

Thanx. 

I will try to feed the right bacterias, and hopefully this deficiency is secondary. 

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liv -  that is pretty awful  :(  i THINK I have a mild case of mast cell activation syndrome/disorder BUT getting a doctor to even look at the research is nearly impossible.  I have been flying blind and self medicating and it's been working.  I had to experiment with different h1 & h2 otc meds and when to take them (I take them at night) then Flonase 1x in the morning and a tiny bit of Xanax in the morning then I pretreat with nasalcrom before meals.  this is just what I do.  there are many in my shoes who are figuring it out on their own and passing on what works for them.  every doctor I have tried to get to give me gastrocrom has refused and I don't know why if I just wanted to try it??  the Xanax lolz is easy to get when they raise my blood pressure :D the diet rotation was a very big 'aja!' moment when it started working.  i'm resigned to the fact that i'm probably always going to be on my own with all of this, celiac included, as several doctors have suggested that even celiac is not a big deal/real thing.  stick to your gluten-free diet.  maybe try some of the things?  it took a very long time to get to where i'm at, quality of life-wise, but I think bc I was undiagnosed for 25 years and my body was in pretty bad shape (97 lbs at dx and I am 5'8")  so, hang in there.  

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8 hours ago, notme! said:

Notme! 

Oh, yes. We're pretty much alone in sickness. Hopefully it will change, and patients will be in the focal point in health care. At least we are able to share things with each other. 

I will definitely try some nasal things to aid. But I can't try Xanax, I got a similar medication because the doc assumed my issues were only psychological. That was a horrible experience, I had severe convulsions for several hours. And the medication list for DAO deficiency is a big No for antidepressants and anxiety meds, as for many painkillers too. 

I take h1 twice a day, and h2 in the morning now. I get a lot of energy from H2, so it might not be a good idea to switch to nighttime. 

And I'll figure out what to eat and not. 

I did eliminate meat 15 years ago. Hardly eating any fish. No cereals, as little additives as possible. Will try to eliminate dairy too, and some "forbidden" fruits and vegetables..like tomatoes. 

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Live, does the h1 make you sleepy? Why not some of the newer antihistamines (like Zyrtec) that aren't so sedative? Do they not have the same beneficial effect for the the symptoms you are treating?

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