Seeking treatment for Histamine Intolerance

[FruitEnthusiast]

Hi friends! Been a long time, back here seeking info, ideas, referrals or treatment for my Histamine Intolerance. Referrals, info, ideas? I’m NCGI, completely disabled, losing weight. Need to find professionals who treat HI in So Cal?

[trents]

What does NCGI stand for? We have become a culture of acronyms.

I note your forum handle is FruitEnthusiast. Your probably already know this but some fresh fruits and lots of other foods either trigger the release of histamines or are antagonists for the enzymes that break them down: https://theceliacmd.com/articles/histamine-intolerance-causing-symptoms/

[FruitEnthusiast]

Thanks for yor response trents! NCGI is Non Celiac Gluten Intolerant. Yes I am aware of histamine levels in foods. I can eat some fruits not others, cherries are on my “can eat” list. I haven’t been on this site for years. Is it still a place for NCGI people to come with issues or has that changed? At that time NCGI was used frequently here. I’m looking for Drs that can treat a Histamine Intolerance. I’m very familiar with what it’s like to live with it but haven’t found professionals to help. I think what I need is an Allergist. I was hoping to contact GottaSki, she helped with this years ago but I’m still struggling with it. Maybe I posted in the wrong category? 

Thanks again,

Sara ?

[icelandgirl]

Hi Fruitenthusiast!

I remember you from a few years ago.  This is definitely a board for NCGI still.  ?

Gottaski is definitely the person I would go to for HI.  She was diagnosed with MCAS, I believe.  She is not around much at all.  I can't actually remember the last time I saw her post, but you could try DMing her.  I've done that in the past and she is super kind and helpful!

I hope you get some help and answers!  I wish I could help with your situation.

Hugs!

[FruitEnthusiast]

Thanks so much for remembering me icelandgirl!!

I found GottaSki’s email! Sent her a note!!!  

So good to be on here again. My computer died but I’m able to do this on my phone!!!

Thank you for your support, it means the world right now! ?

[cyclinglady]

Hi!  

It can be hard to find a doctor who is knowledgeable about Mast Cell Activation Syndrome.  Consider starting with an allergist.  

https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

https://www.aaaai.org/conditions-and-treatments/related-conditions/mcas

Have other issues like Crohn’s, SIBO, etc.  been ruled out?  

 

[FruitEnthusiast]

Hi cycling!!

Thanks, was hoping to find more progress made in the Histamine arena by now. I don’t have symptoms of MCAS I’m aware of, just HI. No symptoms of Chrohns, just chronic C, no pain involved. I’ve asked several Drs about Sibo, none have thought I need to be tested for it. 

 

In your opinion is Sibo a standard test all of us with these issues should have?

[trents]

FruitEntusiast,

I appreciate your post as it made me think histamine intolerance may be be causing my headaches and migraines that I seem to get during the night when I'm sleeping almost every night, especially in the spring season. I'm thinking my histamine levels are always elevated from various low level food-related allergies and various environmental elements. Then when spring pollens start being added into the mix it just pushes me over the edge.

Your post has caused me to investigate histamine intolerance the last couple of days. But from my research it seems like a very difficult problem to address with any degree of confidence in the sense of coming up with any definitive answers or solutions at this point in time, given the state of the science.

I've had allergy testing done a couple of times, once using the skin prick method and another time using the serum testing method. The discouraging thing, first, was that there was little agreement between the results of the two tests, giving me little confidence that allergy testing has much validity to it. This confirmed a lot of what I had read and the lack of interest that many physicians exhibit toward allergy testing. The second discouraging thing from those tests was that both found I was allergic to like 30 different common foods. That would make an elimination test diet very challenging. You got to eat something besides rice and potatoes to be healthy. I envy those people who have discovered through experience that only one or two foods trigger their reactions.

cyclinglady, this link you included in your post: https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/, I found to be very relevant to what I am experiencing.

[FruitEnthusiast]

trents,

glad my post was helpful, I too wish to be finding more help available here in the US. One deflating aspect of this is that it’s being treated in other countries like the UK. Which means we are behind in America on the holistic side of things. Maybe all us HI people could get a special rate to fly over there for help together - oops there goes another idealistic fantasy thought... wish I had the budget to be helped where it exists. 

Yes all the Histamine adds up, fills up our internal Histamine bucket as I’ve heard it described. Important to keep the bucket contents low.

Here’s a link for the best site I know that lists Histamine levels in foods, from Switzerland (oh to go over there). Hope it helps. I still find my body doesn’t always coincide with the list, so some trial snd error involved. I don’t have environmental allergies so I feel for you, sounds extra hard. Keep fighting the good fight ?

https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

[FruitEnthusiast]

...also the way I combat all those long lists of ingredients is I don’t eat anything processed - too much stuff in there. I make everything from scratch using all whole foods. Lots of work but worth the results! Avoiding canned foods helps and whatever you do avoid canned fish - look up Histamine poisoning from canned fish. I went tbrough that and it really set me back. I’ll never touch it again.

[trents]

One of the dynamics in these things for couples and households is having to compromise with the other people involved so as not to be able to tailor your diet to the degree you would like to. And I don't find it very practical to try to eliminate canned and processed foods from your diet when you live in a place where fresh foods are not available much of the year.

What about frozen veggies? Are they probably going to be better than canned? You would think that freezing would dramatically slow down or stop the degradation that creates histamines. Of course it might depend on how long the green beans sat around in the processing plant before being frozen.

[FruitEnthusiast]

Yes eveyone has a different situation, with it’s own challenges for sure, so we just have to do the best we can. I know of no problems with unprocessed frozen foods at all, it’s never been a problem for me.

[Posterboy]

FruitEnthusiast,

I am getting ready to go to a conference ...so I will be out of pocket for the next week or so...so don't be offended if I don't right back too you....I find I can't keep up these days...busy good is a good thing....but it leaves less time for forum things.

But I wanted to give you some links that might help you....the reaction to canned fish can be from high tyramine levels...which can trigger a HI reaction.

Here is a great thread on it.

here is the research you mentioned on canned fish and high histamine and tyramine content.

https://www.researchgate.net/publication/286017493_Determination_of_histamine_and_tyramine_levels_in_canned_salted_fish_by_using_HPLC

if you just have a HI (histadelia) then taking Niacin will treat this.

www.encognitive.com/files/The%20Role%20of%20Vitamins%20B,%20sub%203,%20and%20C%20in%20the%20Treatment%20of%20Histadelia.pdf

(I could only find  the pdf to the research).

here is some other research on Niacin and Mast Cell issues that might help you.

https://www.tulsaworld.com/lifestyles/health-med-fit/on-nutrition-niacin-flush-may-be-confused-with-allergic-reaction/article_6dd3ff58-bfb9-5c3e-87fb-e7aa516d9f30.html

https://www.lymedisease.org/lyme-sci-mcas-agony/

https://www.mastattack.org/2015/04/mast-cell-mediators-prostaglandin-d2-pgd2/

https://www.ncbi.nlm.nih.gov/pubmed/17008871

https://www.ncbi.nlm.nih.gov/pubmed/18784348

I know two nutrients well....Magnesium and Niacin.....they both helped me tremendously.

I usually try and explain these things ...but as busy as I have been ...I just try and post the links to the research  and let other's see if makes since to them.

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

Approx. only 10 pct or less of people will take Niacin because of it's flushing (which is temporary)....but I had a friend who had a HI (histamine intolerance) and it did help them.

good luck on your continued journey.

Posterboy,

[FruitEnthusiast]

Thank you Posterboy,

Only glanced at thread so far but noticed a mention of B12. I am trying to get a definitive diagnosis for a very severe B12 deficiency, and my folic acid is low too so the Niacin sounds pretty interesting. I’m anemic too but waiting for tests on that. I take the daily max of magnesium already for C - helps a lot for that.  Think I might find something in the info you forwarded - thanks!

 I believe my reaction to canned tuna was histamine (scromboid) poisoning from tainted and/or aged fish. Won’t touch it again, miserable and overflowed my Histamine bucket so bad I could barely eat anything for 6 mos at least. 

Thanks for making the time, I’ll look at all you sent!

FruitE

[Posterboy]

On 4/10/2019 at 6:39 PM, FruitEnthusiast said:

I take the daily max of magnesium already for C - helps a lot for that.  Think I might find something in the info you forwarded - thanks!

FruitE,

The hardest part about taking any vitamin/mineral is finding the right form/frequency to take it in ...

while taking magnesium oxide can help the big "C" it is not well absorbed by the body. see this good thread on magnesium.

taking Niacin has had similar issues. ..it flushes people in higher doses and why most won't take it. .. find a 50 or 100mg and just take it with meals....you will have a warm sensation in 20 minutes (always take with food) after a couple days this (warm sensation) will go away and so should the itching.

Here is a good article on how it used in the treatment of Primary (Frank) Pellagra back in the day...that I ran across trying to help someone with his skin lupus...but alas they won't listen..I hope you will!

https://www.dermatologyadvisor.com/home/decision-support-in-medicine/dermatology/pellagra/

Notice large does are not needed ... and can be counter productive due to flushing associated with higher doses because of low acceptance of this fact. .. a natural process of the opening of your blood vessels/capillaries allowing more oxygen to reach your muscles and why it is often used in low amounts in work out supplements.

but take it with meals at only 50mg or the more commonly/widely available 100mg niacin tablet size and you should notice your histamine issues subside over a few months use....

today pellagra is subclcinical and usually only happens in those who also have (other) GI problems...it is more commonly called "refractory pellagra" or 2ndary Pellagra because it happens 2ndary to your celiac diagnosis.

gluten free works did a good article on this a few years ago.

https://glutenfreeworks.com/blog/2017/07/18/niacin-vitamin-b3-deficiency-in-celiac-disease/

I have now used up my available (forum) free time for the week. .. .thanks to a rain day.

Let other's know if it  helps you ...so it can help other's too! that is all I  have tried to do.

https://www.celiac.com/blogs/entry/2167-open-letter-part-1-to-fellow-gi-sufferers-etc-like-ibs-uc-and-other-gi-diseases-like-infant-heartburn-gerd-that-grows-into-in-time-to-ibs-uc-chrons-and-ncgs-as-a-teenager-or-celiac-disease-in-time-as-an-adult-look-beyond-to-the-parent-disease/

see also this forum thread that talks about Corn(starch) can trigger DH symptom's in some Celiac's.

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

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,