Histamine Intolerance and DAO deficiency, Gut problems

This is a subject I personally haven’t heard about on this forum, yet I know gut issues are an important topic to the members of this group, and this is quite a nasty condition that I only recently learned about through diagnosis. Does anyone have any information on DAO deficiency (the enzyme needed to break down histamines in the gut) or Histamine Intolerance in general? Does anyone know how these conditions could be related to Hashimoto’s, or other thyroid/auto-immune conditions?

Here’s the little I’ve gathered since my diagnosis earlier this week: DAO (diamine oxidase) is an enzyme present in most people's intestinal tract. It is needed to break down Histamines that are present in foods, and in this process it keeps them from entering into your blood. When people don’t have this enzyme, or are intolerant to histamine for another reason these histamines cause all sorts of reactions similar to allergies, skin problems, rashes, intestinal issues, bloating, diarrhoea, constipation, weight loss, weight gain, and it can get to the point where full on anaphylactic shock occurs (happened to me several times in my life). Histamines are present in all foods pretty much, and as food degrades histamine levels start to skyrocket, so fermented foods and alcohol for example are incredibly high in histamines. Also as we know histamines play a role in inflammatory and auto-immune responses.

I’ve had stomach problems my entire life pretty much, and i’ve gone from doctor to doctor with little help, most just labeled me with IBS and told me to watch what I ate. I kept reacting to so many different foods nothing made sense, even things that are supposed to be healthy for me would send me into episodes that would last even 2 weeks at times where I would be so sick I thought I wouldn’t survive.

Apparently this conditions is very under-diagnosed, and people often go for many years before finally receiving diagnosis. I am convinced this is where my health problems started. I have Hashimoto’s (diagnosed March last year), and was diagnosed with Ulcerative Proctitis (colitis) and Duodenitis this week as well. I am 95% certain my gut problems came first, and I have a feeling that this DAO deficiency was the root of all problems. They don’t know what causes it, some say its genetic.

Please chime in with any advice / information / questions / comments you might have. I could use a lot of help here, and if this is something that isn’t spoken about on this forum, maybe it should be.

Cheers,

Dan

55 Replies

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  • Years ago, I participated in a conversation about histamine intolerance on the AllergyUK forum. It's also a subject mentioned regularly on the Foodsmatter website foodsmatter.com/allergy_int...

    I'm quite sure there's more than a co-incidental connection between thyroid and histamine intolerance. Medical profession were totally disinterested. I also was diagnosed with IBS, and GP shrugged, looked bemused, probably marked me down as a hypochondriac etc etc when I mentioned histamine intolerance.

    Other than paying out for extortionately priced DAO supplements, or limiting your diet to the really blandest of bland foods, there didn't, and still doesn't seem to be any sensible answers. I carry a supply of generic antihistames with me all the time and have basically accepted that it's yet another thing that I have to put up with and deal with every day of my life.

  • I'm sorry to hear that you're also dealing with this. I don't want to take any more medication for the rest of my life, and I understand that antihistamines don't actually eliminate the histamines, they instead block receptors in your body from accepting histamines. So if you stop taking the meds the reaction comes right back. Have you had such an experience? Do you take them every day?

  • Dang,

    DAO has been discussed on the forum healthunlocked.com/search/d...

  • Thank you!

  • I did a lot of reading about this as a believe that my son has this but although he saw a gastroenterologist privately who was willing to test him for it, the hospital had no facility to test for it. Clemmie

  • For DAO it was a blood test that found my deficiency. For other forms of Histamine Intolerance I'm not sure what the tests are, there should be a lab that your doctor could send your blood to for this test. I did the blood panel at a private clinic (here in Berlin) and paid out of pocket, I can see on the invoice the DAO test was 32,18 euros. See if you're able to at least get this test done for your son, since it's a common form of histamine intolerance.

  • This was a few years ago so maybe it's changed now but it was the DAO test and they said they couldn't do it.

  • It would be worth trying again. Possibly by now the test could be available.

  • Histamine build up is quite common in hashimoto and should improve when thyroid levels are optimised.

    But histamine intolerance unfortunately is not known so well and doctors tend to ignore it.

    If you suspect you might have histamine build up there are for example certain probiotics and vitamin B that helps braking down histamine.

    Diet wise it requires a bit of thinking , cool down food fast and freeze it, do not store in the fridge, that is one way to help reducing histamine. Avoid chocolate, kiwi, strawberries, banana, rice, cheese, yoghurt, anything fermented and so on.

    For proper histamine intolerance certain antidepressants taken before bedtime seems to work as it reduces histamine during the sleep. Dosing is very small so it shouldn't mess up anything else.

    Antihistamines might work not so well as they for some reason increase the histamine levels in long run so finding a doctor familiar with histamine intolerance is important.

    Dao should be prescription free.

  • Thanks Justiina, I was just reading your posts on histamine intolerance from a year ago. I am just about getting to a good place with my thyroid meds so I suppose I will re-test this enzyme in a few months and hope that it's come up.

    Can you specifically recommend probiotics? I'm already taking probiotics and wouldn't mind trying a new brand to see if it helps.

    As for diet I haven't been able to stomach fast food since I was 12-13 so I never touch it. Too bad about the rice tho it's one of the staples I have that doesn't seem to affect my stomach too much (brown rice only). Can you direct me to a resource about this type of diet?

    Any recommendation where to find a good brand of DAO? I'm not finding so much online and it's hard to know what is good or what might even be a scam.

  • Some bacteria causes histamine build up so one must carefully choose the correct bacteria. Bifidobacterium longum for example helps, that can be found as single strain, quite cheap as well.

    There are other beneficial bacteria too but too often mixed up potentially harmful ( histamine wise harmful) bacteria.

    Rice I mentioned as it starts to produce or grow histamine quite fast , but it might be suitable for you so one must build their diet individually. And on the other hand a bit of histamine here and there won't harm you if you otherwise eat clean as possible.

    If you go on clean diet and supplement correctly it takes about a month to feel the real difference and you can start introducing certain food back to your diet to see does it cause any symptoms as some food potentially high on histamine might be suitable for you in the end. It is about unloading the burden and trying if fresh start sort of reboots your system.

    Then if you have histocytosis (is that the real word. ..) or MCAS you need bone marrow sample as normal blood tests aren't accurate enough for diagnosis.

    To me it sounds like you could have not just histamine intolerance as you have had that extreme reactions.

    DAO definitely is one thing you should try. Unfortunately it might get expensive if you need a lot of it.

    I am writing this on my phone so I will send this and try to find few links for you in English as I have studied this matter in finnish.

  • Mast cell activation syndrome MCAS or mastocytosis (not histocytosis :P) Google those, does it sound familiar? That causes histamine intolerance.

    Another thing could be eosinophilic gastritis which is more so allergy type than low /high stomach acids. Similar symptoms tho.

    For all more tests are needed to confirm diagnosis. And a good doctor.

    I hope this helps or could lead you to right direction. From MCAS forum you could find other similar type of conditions possibly behind your symptoms.

  • Thank you so much for all this information. I'm going to read up on everything you mentioned and bring it up with my doctor at my next visit.

    Much appreciated,

    Dan

  • Hereditary angioedema HAE could be one too, tho its rare too but with so extreme reactions any possible condition should be considered.

    Many of these are either rare or under diagnosed so dig deep to find all possible information and possible similarities with your condition. There probably are more variations of these conditions as well.

    With these patient has to be active.

  • I don't think I have HAE, maybe I'm wrong about my reactions but some of the symptoms I get are listed for anaphylaxis. I don't get face swelling or rashes. Most of my problems are digestive. If I eat something with preservatives, or tomatoes my intestine has a violent reaction and those foods can go through me in the matter of 30 minutes to an hour after I've eaten them.

    There is a particular reaction that has happened to me several times soon after eating certain pre-made foods: I instantly need to go to the bathroom, my mouth starts salivating with a bitter kind of taste, then within a couple minutes I start to sweat so profusely that the floor is covered in a pool. At this point I become incredibly cold and start shivering violently and go pale as a ghost. The entire time I pretty much have to fight for my consciousness as if feels I'm weak and about to faint. Eventually something "clicks" and I all of a sudden have to urinate and once that's done it's likes my body has expelled everything then I return to normal and eventually feel great (very strange). The whole episode lasts around one hour in which I feel like I am going to die. That particular reaction hasn't happened in a couple years now (happened twice in one week in 2014), but I still often get mini versions of this where my body just decides to expel everything and I'll feel quite ill until I do. And recently I had a reaction to quinoa (when I tried to reintroduce it) that lasted 10 days where I couldn't keep any food in (would go straight through me), and that got me to the point where I finally got this diagnosis.

    Do you have any clue if that is anaphylaxis? Or what is it? I kinda felt like I finally found an answer with this new diagnosis, but I don't experience hives or swelling which seems to be the main reaction to histamines.

  • I am not sure if hives or swelling is required. Like for example in HAE swelling can happen inside the bowel/gut so why not with histamine as well?

    It's complicated matter as it does fit to anaphylaxis and for some it never reaches life threatening reaction. Sweating and feeling like fainting indicates sudden drop of blood pressure which is histamine related.

    If it is eosinophil related then that doesn't cause hives or swelling just GI symptoms and that is treated with corticosteroids.

    Both conditions you mentioned above can be related to eosinophil. Eosinophil count in blood doesn't always rise, samples have to be taken from gut and bowel.

    You don't have to have all symptoms to have any of diseases mentioned earlier. It could be even parasites.

    I doubt it is just IBS as it is just a symptom not a syndrome. And yours are a bit too extreme to be just functional issue.

    You should also consult a dietician who is familiar with these issues.

    And if there is anything you can remember from your past to figure out did something trigger it , it helps to identify possible causes.

    Like I had yersinia enterocolitica 25 years ago and I couldn't fight it off and now I am left with digestive issues, allergies, histamine intolerance and thyroid issues.

  • Ah ok thanks for explaining that. I do have a naturopath who helps me with my diet (he's specialized in Hashimoto's), we have an appointment in February so I'm going to discuss this with him and until then I will do as much research as possible.

    I also have to make an appointment with my doctor as there are a number of results she has from stool samples, and a genetic test that I haven't yet seen, and I have to also give her the results from the gastroenterologist and discuss those.

    I really can't pinpoint when this started, I was very young when I first started having digestive issues, I had a horrible diet, I was a fussy kid and would only eat hot dogs and processed foods, and I didn't get any relief until I stopped eating meat (except fish) at age 20. Looking back it probably wasn't the meat itself, but more so all the cold cuts, sausages, and sandwiches I was eating. But over the years my problems have come back and I've had to cut out more and more foods.

    I think this is either genetic, or more likely environmental due to a poor diet in childhood and adolescence.

  • Oh those tests might reveal something. Is the stool test measuring bacteria?

    I for example have low e.coli which of course is very potent bacteria , but low e.coli leads to food intolerance. I just found out there is probiotic called bioform made in Germany that is recommended.

    Was also reading finnish CFS forum and one person had relief from H2 blocker + antihistamine + londium+ DAO.

    Almost all food intelorances disappeared soon after medication.

    Other one had complete relief once thyroid and adrenal levels were optimised and been well ever since.

    Both had ended up on eating just 4 different type of food so very limited.

    Have you been tested for h.pylori as that can cause symptoms like yours as well?

    Do you remember to drink a lot as histamine intolerant is alway dehydrated when fluids escape when histamine is released?

    Are there any other symptoms you think are related to this issue? Some might are same than with hashimoto.

  • There were quite number of tests for different bacteria, even one that was done during gastro/colonoscopy where they took a sample from inside me and performed some biopsies. So far all the bacteria tests have come back negative (not sure if it was the same ones you mention, when I get home from work I'll check the labs and see).

    Good information about drinking I didn't know that and I find I am super dehydrated if I don't drink like a fish.

    Other symptoms related could be some skin problems that have come and gone over the past years, I have blisters on my feet from cold sweat (I sweat when I'm cold and not when I'm warm). When I was a child I became allergic to water, yes water, and broke out in hives for a week. There could definitely be more I need to think about that one. When I get home tonight I will go through my strange medical past and make a long list of all the weird unexplained things that have happened to me.

    You've been so helpful to me, I felt alone in all this. Thank you so much!

  • You are not alone!

    I was lost until I was able to track down the most possible cause. Doesn't necessarily cure you, but if there is a certain pattern or trigger then it's easier to narrow down what to test if doctors are unsympathetic.

  • So I'm looking at my results now. I think I was tested for h.pylori, there is the following note on the procedure from the gastroenterologist:

    "Histological and microbiological samples were taken from the antrum (PE II) and corpus (PE Ill). Hp Quick test negative." I think 'Hp' is h.pyloris?

    I did notice some unusual values related to eosinophil, which you were mentioning. I'm in Germany and I'm not sure how to translate these into English, but they should be very similar and understandable (I hope). Here are the results that were out of range:

    07.12.2016

    Calcprotectin 63,2 + (no range given)

    Pancreas-Elastase i. 73 - (no range)

    Yersinien-IgA-Blot negative

    Yersinien-IgG-Blot positive

    Salmonella, campy. Jejuni, and a bunch of other bacteria I can barely read all came back negative twice (h.pylori not on list)

    13.12.16

    Haemoglobin 13.4 g/dl (13.5 - 17.2)

    Hematocrit 38.3 % (39.5 - 50.5)

    Differential Blood Image (automatic) (?translating word for word):

    Neutrophile Granulozyten 18% (42 - 77)

    Lymphozyten 17.9% (20 - 44)

    Eosinophile Granulozyten 61.5% (0.5 - 5.5)

    Differential Blood Image (absolute):

    Eosinophile Granulozyten 5.81 (0.02 - 0.50) unit is 1000/mcl

    Neutrophile and Lyphozyten were within range on this one.

    Total protein (Photom.) 6.5 g/dl (6.6 - 8.7)

    Diamine Oxidase Activity i.S. <2.0 IU/ml (14 - 33)

    Can you decipher anything from this? They never mentioned eosinophil or anything along those terms to me. They just told me to take my medication and be a good boy as most doctors do.

  • Holy ****! You are in very same boat with me lol

    Eosinophil % and yersinia positive.

    Well we are now a big step closer to understand your symptoms!

    Tho your eosinophil % is far higher than mine , but still. It indicates at least allergy but can be something else as well like sign of Addison disease in rare cases.

    Positive to yersinia means you might have tracked down what triggered your hashimoto. I am not sure if it's chronic or acute based on results.

    You sort of ran into right person on this forum :D

    So next step is to think is your yersinia infection acute or chronic.

    Have you had any joint pain or swelling? Stomach bug type of symptoms? Stool test to track down yersinia from stool?

  • That's good news, finally a break for me! :) hehe.

    I have had random joint paint from time to time, but it's mostly in my knuckles and hands and I do play a number of instruments, it usually happens from playing piano or guitar for a long time. Swelling isn't something I normally experience. Stomach bug type symptoms have been going on for at least 20ish years of my life if not longer. I cant pinpoint the start of it (I'm 31 now)

    As for stool samples this is the first time I've ever done stool samples so unfortunately I don't have anything prior. When I lived in Canada doctors were unwilling to run tests and they all told me I'm healthy and labeled me a hypochondriac because I was constantly cutting things out of my diet and trying to boost my health.

    I'm not even sure what Yersinia is, my doctor never mentioned it to me, she's still waiting for me to bring her these latest results from the gastroenterologist, so maybe she's waiting for the bigger picture. She only mentioned there is a marker that came back positive that shows that there is some sort of auto-immune response.

  • Wrote long text and it disappeared. Sigh!

    Here is a link to eosinophil associated illnesses

    apfed.org/about-ead/what-is...

    I will write you more about yersiniosis when I am on my laptop next time. On my phone and laying down and feeling lazy :D

    I am 37 and I fell ill when I was 12 or 13 when i had antibodies to yersinia for the first time.

    Long and bumpy road.

  • Just read about eosinophil from your link. It's interesting to read that they are part of the immune system and that they help to fight infections. I had my Thyroid antibodies tested before and after this debilitating 2 week episode, since September they have doubled, whereas the entire year before they were always around the same number.

    Anti-TPO 550 on 29.09.2016 and then 954 on 20.01.2017

    I wonder if eosinophil % has a correlation to thyroid antibodies?

  • Possibly but as you are positive to yersiniosis it might be the other way around as well.

    Yersinia enterocolitica bacteria cause food poisoning. Fighting off bacteria also causes you body to mistakenly attack thyroid gland which can trigger TPOab to rise. It's called molecular mimicry.

    So question is which was first.

    If yersiniosis is acute then antibiotics are needed to treat it which would ideally lower your antibodies as well.

    Then if eosinophilia is the culprit corticosteroid treatment should calm down the inflammation to fight off yersinia.

    Yersiniosis can cause IBD which would then cause eosinophilia and hashimoto.

    Yersinia can cause very nasty IBD , like chron's disease.

    It can cause anything from mild discomfort to hepatitis or even multi organ failure and death. Or just thyroiditis.

    Eosinophils can be found from thyroid gland in fine needle aspiration but I am not sure if it can cause blood levels to rise.

  • So how do I figure all this out? What's my next step? I'm going to call my doctor's office and make an appointment tomorrow and I want to be prepared before my meeting. I remember when I was diagnosed with hashimoto's I was in a daze not even knowing what to ask, everything was so new and it was overwhelming.

  • Tough question. Most doctors don't even understand how nasty bacteria yersinia can be. If it's acute it's treatable. If it's chronic it's bad news as antibiotics won't probably work.

    As your eosinophil level is so high it's noted , leading to more tests.

    If yersiniosis is shrugged off as an chronic infection there is not much doctors will do.

    I don't know how to read igg and iga to figure out which type of infection it means.

    But you have been ill half of your life trigger is in your past and yersinia might be just result of your weakened immune system.

    So its a puzzle and I can't help picking up all pieces as I know I had yersiniosis first.

    And most importantly is there more , parasites, fungus, SIBO, candida etc causing havoc.

    I will dig more information for you tomorrow morning.

  • Ok thanks. I have a lot to read up on now :) but I feel a lot closer to understanding my health problems and maybe being able to piece together the puzzle.

  • Getting treatment might be hard, but at least you know where to search for. It is easier when one can narrow down the options and work with these issues than go and try to treat random symptoms.

    Here are some links I hope might be somewhat helpful. Unfortunately even though for example Yersinia enterocolitica is well known its poorly studied! There are and will be doctors that dismiss it alltogether, be prepared. I got my doctor to admit it is the most possible trigger in the light of my history and thats all. But that , for now is enough for me, at least I know its not in my head as studies support the idea of it being a trigger!!! How does sherlock holmes say : when you have eliminated the impossible, whatever remains, however improbable, must be the truth

    hypothyroidmom.com/hashimot...

    ncbi.nlm.nih.gov/pubmed/103...

    (like that one, old study, only states that people with thyroid issues tend to have antibodies to yersinia)

    ncbi.nlm.nih.gov/pubmed/121...

    (here it is possible)

    Then there are studies that rule it out totally, wont list them here.

    ncbi.nlm.nih.gov/pubmed/796...

    (old study of chronic yersinia)

    drhedberg.com/causes-hashim...

    (doctor Hedberg treats yersinia with natural antibiotics which are more potent once the bacteria is lurking somewhere in the lining of your gut, that is chronic yersinia)

    onlinelibrary.wiley.com/doi...

    (old case report)

    glutenfreeremedies.com/yers...

    I never had any symptoms of stomach bug, but I was tested for Yersinia when my knee got severely inflamed and it was yersinia. Fortunately synovial fluid was clear so it was not found from the joint. But as I had injured my knee the bacteria in my blood infected the injured site. That started a serie of events that lead to nothing fun.

    I had episodes of high fever and tonsillitis and got antibiotics after antibiotics. They drained fluid from my knee many times and injected cortisone. They never told me I had very high antibodies yersinia, they kept testing in silence.

    they tested Chlamydia too as it can cause similar symptoms, but I was 13 and I guess they should have told my parents they are testing STD. But no one said anything.

    When I was 17 I got blood poisoning, and enterovirus which is like chicken pox type of illness, got blisters on my palms and soles of my feet and again high fever. I was not told my CPR was way too high, I was on a holiday. Just got another course of antibiotics. When I came home my parents took me to local hospital and they wanted to hospitalize me immediately because of high CPR. I refused and got horse load of antibiotics. That finally worked and my knee settled down and never had tonsillitis afterwards.

    Then one day I just fell ill. Got just terribly nauseous and it never vanished. No one cared. I was 19 and they said it must be anxiety, but I was intolerant for so many food, suddenly. Never had been.

    When I was 22 psychiatric who was replacing GP at healthcare for my work figured it all out. She touched my joints and said that these feel weird. My joints were not achy nor swollen, but she tested yersinia and what do you know. I still had yersinia antibodies and referred me to specialist. Unfortunately it was never forwarded as when GP came back from his sick leave said I am depressed and anxious no need to refer me.

    This all I found out just few years ago. I had suspected it all the time but I had no evidence as I had no idea I had had yersinia from so young, but the second test results I knew and I read about yersinia thinking it happened that time when I was about 20.

    So that was just a small part of my story, but just explaining how it can be.

    Took this long for my thyroid levels to budge, I have had antibodies, but weird way so doctors ignore me. Finally my TSH is rising tho but as you know it can take several years before your thyroid levels show abnormal enough for doctors to do anything.

    My eosinophil count is ok otherwise except slightly over the range %. My doctor said as everything else is ok, it is allergy as I had told her I do get hives, but flu like symptoms for example if I consume any dairy.

    Your eosinophil count and % are way above the range indicating it is more acute.

    Your TPOab might be high because you are fighting off bacteria as your immune system is fighting so hard, but it can also be that your immune system is getting stronger. Like sometimes when a patient goes gluten free their antibodies rise as weakened immune system is now getting better. So one illness can mask other illness, if you get my point.

    Like I had TSH okish, normal ft4 , but low ft3. When I optimized everything, B12, other vitamins and selenium and boom my TPOab rose to borderline and TSH rose and ft4 dropped to rock bottom. I have had high thyroglobulin and been TPOab negative until I got everything else under control.

    You fix one thing which might have masked another thing as human body tends to compensate things with whatever ability it has, and once that thing is sorted out , other thing shows up.

    So my next question is if you could list up all food you can eat, what meds (if you want to tell) you take and what supplements you take? As that is elementary (i love sherlock :P) to figure out is there potential cause.

    We are all individuals and react differently, but I have been in this boat for long enough and read quite a lot so I might see something you don't. My memory these days is quite poor , but if I have read about something I remember that and can search for it.

    A bit more about eosinophils

    ncbi.nlm.nih.gov/pmc/articl...

    It is stated as rare autoimmune disease, but just as an example I post that link. I got the idea you are male, for some reason male are in higher risk to get these eosinophilic gut inflammations. And there are several different types of this, can be lurking anywhere in your GI tract.

    I cannot offer your a solution, just an insight how important these two test results can be when identifying the cause and outcome. I am not a doctor, but I bet the answer lies in between here somewhere. Unfortunately it might be spiced up with other infections like I said before, parasites, worms, SIBO , fungus, candida and so on.

    If your yersinia infection is acute that is the most probable cause for high TPOab. Whether that triggered eosinophilia I don't know, but I was able to find information of eosinophilia found in hypothyroid patients, but not if eosinophilia causes hypothyroidism or vice versa. Although it was mostly found from older women which you are not lol, but it is statistics, we are individuals. But eosinophilia is connected to RA, asthma and allergies so that might be the connection.

    My skills to find the best possible information is somewhat limited as I am finnish and reading medical stuff in english can be slow so I have to skip quite a lot of detailed information as that is just hebrew when you are not medically trained.

    I hope you now have some sort of picture of what these all could mean and how it works. I know its a lot of information in short time and a lot to absorb. There will be several AHA moments for you once you get the picture and are able to track down your history and are able to put pieces together, why , where and when something happened. It might not offer you a cure, but better view of your situation. You have to become your own doctor chasing after every tiny lead to find the best possible protocol to maybe reach for better health or to control the situation.

    Thats all for now, sorry about long posting. Ask if you didnt understand something. I tend to make a lot of mistakes while this tired I am now.

  • Wow ok lots of information! I'm going to take some time to absorb all of this. I did read about Yersinia and Hashimoto's link last night. I had no clue about this and I feel like it's a whole aspect of Hashimoto's that came to light for me.

    As for the foods and medications and supplements I will make a list when I get home from work.

    I'll also go through and comment on your personal experience because some of those experiences are similar to mine (I still have blisters of my feet, and I've had them on my palms too, and between my fingers).

    And yes I am male hehe, my girlfriend keeps telling me not to get ahead of myself with all this new info because I may be let down in the end, she's seen me suffer for years and be sent from doctor to doctor with little help. I know she's right, but I feel for the first time I might actually be onto something, so pardon me for being excited about it :)

    Thanks again Justiina, I'll reply more in depth later today.

  • To a certain point I agree with your gf. Finding a cause doesn't mean there is a cure.

    But it gives one peace of mind when everything starts to make sense. I have changed a lot as a person after being able to understand the bigger picture.

    Why becomes because and you end up the master of your disease or disorder instead of being a slave.

    Doctors don't understand the importance of knowing why you are ill. But even if you can't fix it , you have the answer and can concentrate on other things. Less stress which has huge impact!

    I have improved a lot without medical help by understanding these things as I have done things differently.

    I do believe there is possible cure for you at least to a certain point and at least some level of relief of your symptoms which makes life much easier. It might require more detective work to find a right doctor.

  • I read through your story and I’m sorry that you’ve gone through all that. And yes this is a lot of information to absorb, but thats not a problem, better than no information. Thanks for all the links it’s a great place for me to start my own research.

    About my past (I hope this isn’t too long):

    My problems in the past have always been with digestion. I thought about it and I now remember when it first started, when I was a young child I would go to Romania every summer and winter, I grew up in Canada but visited my grandparents during school breaks.

    From age 5 I would get so sick every single time I went, I would end up with diarrhoea, and would spend a lot of my vacation seeing doctors, and being treated with medical equipment that was so outdated, like giant reusable needles (Romania had just come out of communism and they weren’t yet westernised). So year after year I would go back and get sick. Eventually I stopped having these intense reactions, the food and available produce in Romania was starting to catch up to my western diet from Canada. And I wasn’t sick anymore for a while.

    Once I was about 12 I just started having a lot of stomach problems in general, I stayed home from school often, which I didn’t mind, I almost looked forward to it to be honest. I learned to pretty much ignore the pain, because no doctor really did anything for me, and they all just thought it was a little bug that will pass. But eventually I realised what I ate had an affect on how I felt.

    At 20 I cut out all meat and felt fantastic till about 25, at this age the first signs of Hashimoto started appearing, but nothing major. Also at 25 I travelled for a year in Asia and ate all sorts of who knows what, got sick in some countries, did fantastically in others. I was taking Malaria pills for at least 6-7 months during that year. I eventually ended up in Nepal where I didn’t need the pills, and also all the food was completely fresh, nothing GMO, I felt amazing for the time I was there. But I did have a strange reaction to the skin under my eye and needed Anti-Histamines to combat it, I almost lost my eyelid to it, the doctors said it was caused by a beetle.

    From 26 and on the symptoms of Hashimoto’s continued to get worse (I was still undiagnosed), stomach problems got worse and worse, at this point I hadn’t had meat or milk in 6 years, and I stopped eggs, and started trying to eat only fresh produce.

    Just after my 30th birthday my health had declined to a point where I was completely sick with all symptoms for 4 months straight, my throat was enflamed, I was 50 lbs heavier than I am today, I was falling asleep and cold all the time. My tongue was also swollen and discoloured, with some red spots coming and going and pain, and my stomach was just a complete mess it didn’t matter what I ate.

    I ended up finding a doctor who took one look at my tongue and said we have to start looking into my stomach problems (I didn’t even tell him about my stomach, I thought I had a bad cold), along the way my Hashimoto’s was discovered, and I was also sent to a number of heart tests because they found out I have a slow heart rate (45 beats per minute resting, it goes under 30 when I sleep).

    I’m sure i’ve missed some information, but this is what’s come to mind. As for the food I eat I’m basically on an AIP diet (so no Gluten, dairy, etc) but I can eat some brown rice and nuts seem to be ok. Quinoa and Kale give me a horrible reaction, I can’t eat Tomatoes (sick instantly), no Soy, No meat other than fish. Can’t have corn itself, but cornflakes are ok. Things that are fatty, greasy, oily, make me sick, small amounts of avocado oil or coconut oil seem ok, but not always. That’s the main idea of it.

    Medication: T3/T4 10/100mcg split morning and afternoon. Mesalazin 500mg, Pantoprazole 40mg, Telfast 120mg.

    Supplements: L-Glutamine 5g, Benfotiamine 160mg, Siberian Ginseng 425mg, Zinc Citrate 30mg, Folic Acid 1mg, Magnesium 200mg, vit-D 20,000IU (per week), High EPA Omega 3 oil, Probiotics, and a supplement called T-balance.

    I had to stop selenium, I took 200mcg a day for 2 months and ended up going WAY over the upper limit, on top of this it was during the time my antibodies doubled.

    I started the supplements in November, had my ‘episode’ in December, and by January my antibodies doubled. In march I have another blood test including antibodies, I would like to have a good result next time.

  • foodsmatter.com/allergy_int...

    That fits with kale and quinoa. Tho quinoa if unrinsed can contain a lot of saponins which can cause a lot of symptoms.

    But all these should go away once gut is fixed.

    So you take pantoprazole which is PPI? Does it help at all?

    Do you take any B12?

    If PPI doesn't help then it could indeed be eosinophilic something as PPI'S doesn't relieve the symptoms. Google eosinophilic + and those conditions you mentioned earlier duodenitis and something else.

    Based on your history it is quite obvious you have picked a bug or two during your childhood.

    And probably more while travelling around.

    I know one woman who spent long time in India and got parasite infection that was ridiculously persistent leaving her very ill and at some point she was only able to eat cooked potatoes and even that was difficult at first. She went through a long course of herbal antibiotics which eventually did the trick and she got her health back. But for long periods her gut was so irritated she felt like she eaten needles.

    Once her gut slowly healed she was able to add food back to her diet and now she eats almost everything.

    Lining of your gut has to heal properly. L glutamine is good with zinc but my nutritionist recommended vitamin A too. That was helpful for me to fix leaky gut.

    Vitamin A sort of seals the deal what l glutamine started.

    Vitamin A is also important for thyroid function. As you avoid dairy and liver as it is meat product you do not get vitamin A.

    K2 is important too as no soy and no dairy. Deficiency to K2 does not only affect bones , but can cause stomach problems.

    To me K2 as well is very helpful!

    I take quality cod liver oil with added vitamin A and hypoallergenic K2.

    Zinc can be controversial tho. I get even on small dose overdose symptoms. It doesn't mean it's too much for me, but I am unlucky one reacting that way.

    You are on very limited diet which means you are somewhat malnourished. Fats would be so important hormonal wise.

    You are in complicated situation.

    You might have fought off the original trigger, but caught new ones.

    It's like peeling an onion. Layer by layer.

    Is your doctor practising functional medicine? If not could it be possible to find one?

  • I'll start looking into those other supplements. I have a naturopathic doctor who specializes in Hashimoto's and he helps me with diet and supplements so I'll bring it up with him. (Is that what you mean by functional medicine?)

    What does PPI mean? I only started taking these meds a few days ago and so far they cause bloating and random pains. The pantoprazole isn't too bad if I eat soon after taking it. But I haven't seen any changes yet, I've still had digestive issues.

    I don't take any B12, I used to eat Greek yoghurt to keep my B12 up, I found out I could eat it every 4 days without getting too sick, but my naturopath stopped me on all dairy cuz it all made me sick. I haven't had it tested in a few months.

  • PPI is proton pump inhibitor , it stops stomach acid production. Which means your thyroid medication and vitamin absorption is compromised.

    Histamine wise I would try ranitine like zantac as that is H2 blocker. It reduce/dilute stomach acid too but not stop it completely.

    You need to take B12 if you use PPI.

    So you have got B12 tested? Do you have the results?

    I am not sure if I have understood it right but have you had endoscopy or colonoscopy?

    So many questions :D but like I said it's like peeling an onion. I think optimising nutrients and vitamins is vital whatever the cause is as it can reduce the inflammation dramatically.

    And have you had your T cells tested? As you might have symptoms of t2 domination but in reality it's t1. That is another area where wrong type of supplementation causes havoc.

    I will send you more links a bit later. So more information to absorb but it could give you better view of how things works.

    One cannot understand it all at once , but its easier to try different things and understand the reactions.

    And your doctor is right. Dairy can cause a havoc even though it would be something relatively healthy like Greek yoghurt.

    Dairy can also cause TPOAB to rise!

  • Good to know about the B12, I just emailed my Naturopath about it and will see what dose or action he recommends.

    My last B12 test was 19.09.2016

    683 pg/ml (191 - 663)

    During this time I was doing the Greek Yoghurt thing and even did a lazy course of Methylcobalamine, I would take a 5000mcg tablet every few days when I remembered. Looking back I can't find any other B12 results, either I lost those results or I've not had it done before.

    I did both endoscopy and colonoscopy at the same time, endoscopy found the Duodenitis (could be the cause of DAO deficiency, I read) and colonoscopy found the Colitis.

    I know nothing of T cells, I don't know if I've had this tested, I could look through my results tonight and see if something pops up. There's a lot I still need to learn, I thought I knew a fair bit about Hashimoto's until you dropped the bacterial-link bomb on me and I realised I had ignored a big part of the research simply because I assumed it didn't pertain to me. I thought the same thing about T3 a few months ago (that I wouldn't need it, and yet I'm on it now).

  • selfhacked.com/2014/06/16/s...

    Here you go.

    Good you had both endoscopy and colonoscopy, less things to worry about.

    Is there any result that is under or over the range except the ones you have mentioned? One number here there over or under the range might not mean nothing but it might be connected to other values somehow.

    Like your neutrophils are low as well and that would indicate bacterial infection could be involved too.

    By H2 blocker I mean it is histamine blocker as histamine is needed for stomach acid. For some H2 blocker helps because it was histamine related.

    I wouldn't give that much value to DAO enzyme as if you are on low histamine diet your DAO is lower as less needs to be produced. It is low but can't jump into conclusion before you have tried DAO and H2 blocker. If those work then your DAO was low naturally not just because you were avoiding certain food.

    It is possible to combine PPI you are on with H2 blocker if your doctor is unsure would H2 blocker be enough. Generally PPI'S are not recommended for long term.

    Will post you few more links. Unfortunately one by one lol I am on my phone in bed because I exercised and now I keep falling asleep.

  • Thanks for all the info! I'll hook into H2 blockers, Telfast is apparently an H1 blocked according to Wikipedia. Spoke to my Naturopath and I'm going to start taking B12, K2, and Quercetin (due to high eosinophil). He also recommended N-acetyl last week but I haven't bought it yet.

    From my latest tests I included everything that was out of range. I think I omitted my TSH, FT3 and FT4, which weren't so great either. I got an email from the Gastroenterologist and he said he's going to mail me the rest of the results that came in today, so we'll see what comes.

    As for the PPI, I think I'm just supposed to take it for a month to hopefully repair the inflammation to my small intestine, he also reduced my course of Mesalazine to only one more week (thank god because it causes me so much pain). But the histamines I believe they expect me to take for life, I don't like that idea... if I'm stuck with this histamine intolerance I think I'd like to try DAO supplements instead.

  • Yeah I figured PPI is just to help reducing the inflammation.

    You might have to take at least H2 blocker with DAO. But zantac or pepcid are not harmful the same way so it is ok to take them.

    At least it's worth to try different combinations of meds to find the best possible solution.

    I hope not more bad news from gastroenterologist, you have had your fair share and now it's time for good news!

  • Ok good to know. I feel much more prepared for my upcoming appointments. Thanks again! Lots of reading to do now! 🙂

    If I have any more questions I might post another reply, but for now I think i mostly need to see how this course of meds goes and start these new supplements and hope for some improvements.

  • Yeah you a lot to chew for a while :D

    If possible keep me posted how it goes. You can pm as well.

    I am very curious what will be the thing that sort of cracks the case.

    Who knows your doctors might have knowledge I am lacking so you might be able to tip me. I have next appointment in two weeks to discuss do I even get thyroid medication!

  • I will definitely keep you updated :) good luck with your appointment! Oh the joys of thyroid medication hehe. Hopefully you don't need it yet, or even better never need it, but if you do have to take it it will definitely help restore some value to your life.

    Do you mind me asking how long you've had antibodies without needing medication? I know some people can go for a lifetime like that.

  • No idea! As I was never tested when I was very ill. Then during the years I tweaked my diet to gluten, sugar and dairy free which might have had an impact.

    I differ from many fellow sufferer with having high thyroglobulin ,but not no thyroglobulin antibodies. Thyroglobulin is usually used to measure has your cancer treatment worked but as it has been ruled out, my high thyroglobulin means my thyroid gland is leaking and that can happen in hashimoto.

    My Tpoab has now been borderline during past year either indicating increase of them or decrease of them after a flair up.

    I have reached the point where my ft4 dropping to rock bottom has finally caused increase in TSH to be taken seriously. Fatigue I used to think was bad is now beyond bad and been for a year, no change.

    I used to have only low ft3 and high thyroglobulin. Made me feel ill and couldn't tolerate physical stress. Now low ft4 (10 in range 10-22) causes my sleepiness on top of my other symptoms.

  • That's interesting that you have high thyroglobulin and low antibodies. I don't know much about that specific scenario but it almost sounds like you've got something under control there! I would go into my own struggles with antibodies, low t4/t3, and high TSH (been a years long battle) but that's probably for another post! Hehe

    Just a quick bit of info about the gut issues, it looks like the Gastroenterologist is letting me cut the Mesalazine treatment short, I only have to do one more week of it instead of a month. He said that some results came back indicating that the inflammation may only be the "rest" of an an infection that is now healing. I don't have any news about the Pantoprazole, so I think it means that I can stop it after the bottle runs out (30 pills). But I believe the antihistamines they expect me to take for life...

    So even with a life of stomach issues, the damage caused to my gut has been minimal, I'm feeling pretty positive about that. I've also noticed the antihistamines sort've work, but not fully, I'm still having some small reactions to foods, I've tried reintroducing a couple things (nothing major) and I still seem to be getting a some minor allergy type reactions. Is that normal?

    I tried chickpeas (hummus) yesterday (I really missed the stuff), and right away my throat started closing up and i started getting a phlegmy cough. I couldn't believe it, I used to have this symptom all the time and I thought it was the thyroid meds that had resolved that, seems it was possibly histamine related?

  • Depends what was in that hummus, could it be source of histamine. Like citrus?

    If I were you I would try DAO and pepcid before food challenge.

    (Pepcid is prescription free. Zantac is not. Both H2 blockers.) It's good you don't need that other medication for long as the inflammation is reducing and no damage done!

    Pleghmy cough can be tricky. I had too

    Just started at one night out of nowhere and continued for 7 months. Certain food triggering it. To me it was not only about histamine, it was blood sugar as well.

    It all started after iodine trial that worsened my condition.

    For me it went to so bad during a flu that I was crawling and hyperventilating. But i just had the idea of eating on my mind and eating helped until next meal and again I was crawling and hyperventilating.

    It settled down after the flu but still I had hard time breathing during dinner. So I had to walk around and inhale deep and cough

    Then it just went away and i continued eating. Then it just stopped one day. But i fixed my diet a bit and started to eat resistant strach.

    I found out that in hypo this isn't uncommon. It has something to do with low cortisol. That's why eating relieves it eventually as blood sugar rises and it releases cortisol which like in asthma the asthma inhaler would do.

    There are a lot of people diagnosed asthma but are hypo in reality. T3 treatment worked better than asthma inhalers in one study.

    So. If it went away when started thyroid medication ,maybe you need higher dose now.

    You just need to be patient and let your system heal properly and take it easy with food experiment.

  • I tried to get the cleanest hummus I could find (fewest ingredients) I believe it was chickpeas, garlic and most likely lemon. So I think just the chickpeas and lemon together are already a dangerous combination.

    I'm going to try the DAO supplements once I finish this course of medication, so in a couple more weeks. Do you know of a good brand? Or anything I should be looking out for when purchasing DAO?

    Yes my phlegmy cough has been around since the hummus, I've also been eating too much sugar lately, I took advantage that I seem to be able to stomach some foods now and I think I indulged a bit too much in the past few days, I need to get back to a proper diet (it's just been so nice to taste some of these foods again), since you bring up your blood sugar in relation to the phlegm I've noticed that could be it for me too, I ate some gummy bears (organic type), some dried fruits, too many bananas (I know I know, it was just so tempting, but I'm feeling the damage now...)

    Interesting also that you bring up breathing problems. I find that I have asthma type symptoms that come and go randomly, I haven't had them in months but it came back a bit recently I'm going to look into the connection with Hashimoto's and blood sugar that you mentioned.

    I was just put on a higher dose of T3/T4 so let's see what happens, I'm still adjusting to it. Thanks for telling me to take it easy with the food experiment, you're right and I do need to be told. I can feel that I've done some damage in the past few days, and it's not smart since I'm literally taking medication to repair the damage I've already done 😓.

    Back to my boring old diet! Haha

  • Don't blame yourself for wanting to run to a finish line instead taking baby steps.

    I have done it many time enough to learn lol.

    One ingredient at the time. Not one food like hummus has two or three ingredients.

    Keep diary.

    I have not tried DAO so ih have no experience. I am still just on low histamine diet.

    I fortunately am so lucky to live in finland that I get a lot of help from nature and fresh berries full of support to immune system and natural probiotics. Some fox , deer, bear and rabbit poo and pee as well i guess but... :D

    If you can afford and can get BILBERRY ( which is like blueberry but many times healthier as it grows in twigs in forest) dried or powder it is something you could try to help your gut.

    It has always been used to treat stomach issues over here.

    It is very healthy and has a lot of antioxidants.

    Or tea made of leaf of cloudberries. That is new black as scientists have discovered the leaf has something that is superb for your gut because it grows on swamps and anything eatable growing on swamps is full of good stuff.

    If you can tolerate herbs like basil and oregano those are good.

    Basil is very potent antiviral and supports immune system. Garlic too.

    Ideal would be grow some herbs and eat them fresh, it adds natural probiotic as the best probiotics are I'm soul but just eating dirt isn't recommended :D

  • dang,

    I recently undertook a Diamine Oxidase Activity and Histamine Level Test which showed results at boarder line. I am supplementing DAO Histaminase with Bioflavonoids by Biotic Research Corp and SAMe by Seeking Health as directed by my nutritionist..

  • Thanks! I'll look into that. Have you noticed an improvement from taking it? Is it something you have to take with every meal?

  • Fell across the abstract below and thought of this thread:

    Appl Biochem Biotechnol. 2017 Jan 20. doi: 10.1007/s12010-016-2390-3. [Epub ahead of print]

    Diamine Oxidase from White Pea (Lathyrus sativus) Combined with Catalase Protects the Human Intestinal Caco-2 Cell Line from Histamine Damage.

    Jumarie C1, Séïde M2, Marcocci L3, Pietrangeli P3, Mateescu MA4,5.

    Author information

    1Department of Biological Sciences and Centre TOXEN, Université du Québec à Montreal, CP 8888, Branch A, Montreal, Québec, H3C 3P8, Canada.

    2Department of Chemistry and Centre BioMed, Université du Québec à Montreal, CP 8888, Branch A, Montreal, Québec, H3C 3P8, Canada.

    3Department of Biochemical Sciences, "A. Rossi-Fanelli", Sapienza University of Rome , P.le A. Moro 5, 00185, Rome, Italy.

    4Department of Chemistry and Centre BioMed, Université du Québec à Montreal, CP 8888, Branch A, Montreal, Québec, H3C 3P8, Canada. mateescu.m-alexandru@uqam.ca.

    5Department of Chemistry, UQÀM, CP 8888, Branch A. Montreal, Québec, H3C 3P8, Canada. mateescu.m-alexandru@uqam.ca.

    Abstract

    Diamine oxidase (DAO) administration has been proposed to treat certain gastrointestinal dysfunctions induced by histamine, an immunomodulator, signaling, and pro-inflammatory factor. However, H2O2 resulting from the oxidative deamination of histamine by DAO may be toxic. The purpose of this study was to investigate to which extent DAO from white pea (Lathyrus sativus), alone or in combination with catalase, may modulate histamine toxicity in the human intestinal Caco-2 cell line. The results show that histamine at concentrations higher than 1 mM is toxic to the Caco-2 cells, independently of the cell differentiation status, with a LC50 of ≅ 10 mM following a 24-h exposure. Depending on its concentration, DAO increased histamine toxicity to a greater extent in differentiated cells compared to undifferentiated cultures. In the presence of catalase, the DAO-induced increase in histamine toxicity was completely abolished in the undifferentiated cells and only partially decreased in differentiated cells, showing differences in the sensitivity of Caco-2 cells to the products resulting from histamine degradation by DAO (H2O2, NH3, or imidazole aldehyde). It appears that treatment of food histaminosis using a combination of vegetal DAO and catalase would protect against histamine toxicity and prevent H2O2-induced damage that may occur during histamine oxidative deamination.

    KEYWORDS:

    Caco-2 cells; Catalase; Diamine oxidase; H2O2; Histamine; Oxidative damage

    PMID: 28108908

    DOI: 10.1007/s12010-016-2390-3

    ncbi.nlm.nih.gov/pubmed/281...

  • Thank you!

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