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Miraculous improvement with Low Hstamine Diet!

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Posted 11/1/2013 10:58 AM (GMT 0)
I've been following the research that shows Fibromyalgia to be a Mast Cell Activation disorder. Over time I found histamine in foods to be a huge problem. Yeast of all kinds and this includes anything cultured or fermented is the biggest problem for me. There are a lot of foods that are either high in histamine and still other foods that are not naturally high but still have the ability to trigger histamine release.

I think there is a threshhold and everyone's tolerance to histamine is different.
I was hoping for improvement with diet but nothing like the phenomenal improvement I've had!
Some people lack enough diamine oxidase to break down histamine in the gut. Yet this not the full answer (diet) because histamine is released from mast cells in the skin when they degranulate also.

I have the painful skin, hyperalgesia and also allodynia and was told by my dermatologist that I have too many mast cells in my skin.
This is another clue since mast cells release histamine and this can increase overall body load. I think this is why weather (a trigger of mast cell release) causes symptoms.

I want to encourage everyone to try the low histamine diet for two weeks to see if your symptoms improve. Then do a challenge and eat high histamine foods for 2 or 3 days.

When I cheat I have more symptoms. But even weather does not ellicit the severe response I used to get. Daily headaches are gone! Overall body pain is gone! Fibro fog is gone! Even my tinnitus gets quieter.
And vulvodynia disappears. And more.

I will post a link to the low histamine diet.
Posted 11/1/2013 10:59 AM (GMT 0)
http://www.mastocytosis.ca/MSC%20HT%20Restricted%20Diet%20Nov2012.pdf

Here is the link to the Low Histamine Diet.

Check it out!
Posted 11/1/2013 6:01 PM (GMT 0)
Marrit, just an FYI. We don't talk about diet here, as per our moderators/administrators. There are too many dietary choices, no credible link to fibro (though there is for many other conditions) and many people have dietary restrictions for different things. It was becoming a divisive issue, so it was banned.

I am glad you have found something that helps.
Posted 11/2/2013 1:38 AM (GMT 0)
Marrit..... because your post might make too much sense..... and doesn't involve oxymethadichloral acetate.... because that's okay to talk about :(


Fish
Posted 11/2/2013 2:07 PM (GMT 0)
Myself09,

I am sorry, I was unaware of a rule that conversations about diet are off limits. I realize that there is no one-size fits all diet that fixes the gut. If the gut could be fixed, for most people, healing would be attainable.

I shared this because there are likely many like me who would find relief from chronic daily headache, migraine, sinus pressure, bladder and or vulvodynia pain, joint and bone pain, spasm, etc with a low histamine diet. Most people by now are aware of the mast cell connection to fibromyalgia. Mast cells release histamine, which drive the body's histamine load up. Histamine equals inflammation and pain.

For anyone wanting to dig deeper, look up the research on mast cell activation and fibromyalgia. Also, look up mastocytosis. IF fibromyalgia is indeed a mast cell activation disorder, then following a low histamine diet might offer significant relief. It might not eliminate the symptoms altogether but offer enough relief to come off most, if not all meds.

Further, recent research into the gut biome is revealing that AlL fibro patients have small bacterial overgrowth (SIBO). Bad gut bacteria can trigger every symptom of fibro downstream. In fact, research is also pointing to the gut as the source of autoimmune disorders.

Those who truly want healing and are not interested in merely treating symptoms forever with meds MUST address the gut. I used to think the gut was just part of the problem, but with the latest research into the biome, I now am convinced it is THE origin.
I can provide links to clinical studies for those interested.

After 20 years with fibromyalgia and eating gluten free for 10 years (which got rid of IBS symptoms initially), finding a link to histamine via yeast and fermented/cultured/aged foods was huge for me. It 's been like the difference between night and day.

For those who are already eating gluten free and have done all they know to do naturally, for those who can't use needs because of sensitivity (due to the aforementioned mast cell activation), I can only encourage you to TRY the low histamine diet. You'll know in less than a week if this is going to help.
Posted 11/2/2013 2:09 PM (GMT 0)
Fishchris,

Did you share your solution and if so, can you link me to it? I can't go through the multiple posts to find it. Thank you.
Posted 11/2/2013 2:11 PM (GMT 0)
Er, that should be "for those who can't use meds" -- great spell check feature :)
Posted 11/2/2013 3:38 PM (GMT 0)
Marrit-I was just passing information along. The board mods had to make a decision, since the discussions on diet was getting incredibly divisive and frustrating for many, including myself. Personally, I was glad that the ban was set into place, since I was getting tired of assumptions being made about my diet, and incredibly broad statements being applied to my very varied illnesses.

I am glad you have found something that helps for you. I do suggest to many that clean eating, exercise, and sleep can really help a fibromite feel better, day-to-day. I, personally, believe in moderate exercise as a response to my pain and stiffness.

I would also just add that this is a fibromyalgia board, and you might get more discussion on diets on an IBS forum. While I do not doubt that some people may have a pain response to certain foods, my personal experience is that when I have a crohns flare, everything else also flares. In other words, an individual system is very personal.
Posted 11/2/2013 6:05 PM (GMT 0)
Thanks for sharing. Everyone definitely has things that work best for them and others may it may not react the same. Hopefully this helps someone!
Posted 11/2/2013 8:13 PM (GMT 0)
Myself09

I'm disappointed that there have been divisions in the past so no one in the future is allowed to talk about diet and fibro.

I understand why Fish just left. What a travesty.
Posted 11/2/2013 8:17 PM (GMT 0)
Stinky634,

Perhaps you can hold out for a fecal transplant. It cures c diff and they are looking at using it for Crohn's. Some doctors already are. They now use a capsule of purified fecal bacteria instead of enema or colonoscopy to transplant it.
Posted 11/2/2013 8:20 PM (GMT 0)
BTW , this adds more weight to the research that points to the gut as the origin of autoimmune disorders.

Looking into the gut biome has changed the research and will soon change the way we view illness forever.
Posted 11/2/2013 10:00 PM (GMT 0)
Marrit, thank you so much for this information. My son was diagnosed as an infant with Mastocytosis urticaria pigmentosa. At the time (19 years ago) I was told that it was just something he'd outgrow. I was never told (and the internet was so difficult to navigate back then) that anything further could come from that. All through school we had diagnosis' of autism, dyslexia, chronic constipation and most recently anxiety. I'd long forgotten the old diagnosis until I saw this post. I kept thinking, where have I heard about mastocytosis before? Then I remembered, and this diet might be what he needs! Too bad I didn't know about it when he was a baby.

Joy
Posted 11/3/2013 4:40 AM (GMT 0)
That's awesome. Thanks for sharing.

I felt extra pain today after eating a turkey burger, so I'm always trying to figure out what may or may not help me feel less pain, diet wise, but I suppose I'm not allowed to share that.

I still really think that *my* fibromyalgia pain and fatigue disorder was caused by Ecoli after spinach food poisoning on vacation. I think it changed the way my gut and immune system act. I can't have dairy these days and the list of foods I can eat is becoming more and more limted. I guess I cant' talk about that new update either. I've been interested in research about fecal transplants, because my gut is telling me (pun intended) that the Ecoli got in there and screwed everything up and messed up my flora and got everything imbalanced and that there is a bacteria party going on in there, and no the good kind. I have no idea though.

But its really frustrating that my pain increases after eating certain dishes and that I'm not allowed to talk about it here and B that is happens in the first place.

I like these kinds of posts though.. they give me hope! I'm glad its working for you!
Posted 11/4/2013 12:39 AM (GMT 0)
I've never heard of the low histamine though I've had a lot of improvement with managing my condition by changing my diet. I'm trying to type this in quick because I'm sure like all of the other posts concerning diet it will soon be locked and I wanted to thank you for the information.

I'm lucky enough to have found a much more open minded forum to visit so this will be my last post here. Even my pain management specialist, who is very knowledgeable about fibromyalgia has discussed research that shows that dietary changes can affect pain levels so I disagree with the complete ban on the discussion. It's sad because when I first joined this forum it was nice and now the aggressive manner in which food talk is discouraged has made it very uncomfortable.
Posted 11/4/2013 2:40 AM (GMT 0)
Perhaps there could be an alternative - such as suggesting a separate thread to discuss diet, moderated by those who have had success in this area? Or maybe there could be some 'rules' about 'how to' discuss it so that it does not have to become divisive. Perhaps asking Peter about it could be a good place to start?

Marrit, I also stopped posting because of the responses I received several years ago when I shared how diet and supplements were helping me. But it had been much friendlier here than previously, so I started to read here once in a while. I agree, it's sad that division happened to the point that diet discussions are banned.

I am always very excited when I see others discovering the link between gut health and fibromyalgia. That has also been a part of my experience and success in treating the symptoms also. There is much hope!

Have a nice night everyone.

embers

Post Edited (manyembers) : 11/3/2013 7:48:51 PM (GMT-7)

Posted 11/4/2013 4:09 AM (GMT 0)
Count me as another one who has found significant pain and fatigue relief from changing my diet. I mean - 180 degrees from where I was just a few months ago.

Thank you so much for the info on the low histamine. I think I naturally gravitated towards it out of survival!! Haha After watching my body react to 'easy' food (aka fast food, packaged, carbie/bread foods), I finally gave in and really only do fruits/veggies/proteins. I also notice a significant reaction to alcohols which is a total bummer, but like you suggested, there is a threshold. And if I eat super clean all day I can have a glass of wine without major issue (thank Buddha!).

Thanks again! :)
Posted 11/4/2013 1:30 PM (GMT 0)
I trace my illness to some type of gut infection, being laid out on the sofa for 10 days with severe nausea, unable to keep anything down. No one else in the family got sick. After that, major digestive problems in the upper GI, poor digestion, GERD, esophageal swelling, etc. That lasted 2 years, then I gradually began to heal BUT fatigue was horrific (perhaps to due inability to eat, vitamin and mineral deficiencies?).
Next thing was nerve damage in my feet -- really nasty case of unknown origin.
Later, CFS one whole winter, lived on Tylenol, thought I just couldn't recover from some type of virus.
Fast forward 12 years ... another 10 day presumed gut infection with major diarrhea, lost 10 pounds in 10 days. Then the muscle spasms and cognitive neuro issues began, symptoms gradually accumulated, poor sleep, migraine, then joint pain ... then about 6 months later yet another episode of gut pain, diarrhea all over again. This time it did not resolve and I subsequently realized I could no longer digest gluten, then yeast, and now 12 years later I have identified high histamine foods (which particularly means yeast and anything with yeast, cultured, fermented, etc although there are a few others not in this class) as a huge trigger to pain, inflammation, congestion, fatigue, etc.
Namian, Your symptoms are exactly like mine though I would have to add to that list considerably as well.
I think whatever happened to my gut, the biome was changed permanently. Previous to this, I had a rare UTI and was prescribed Cipro. I'll never know if this contributed, but if it didn't, the infection itself surely must have changed gut biome.
Also, my understanding is that with only skin involvement in children, mastocytosis is usually "outgrown." But not always. Some children do go on to systemic mastocytosis, from what I've read. It would be worth pursuing a diagnosis because mastocytosis can be very serious. There are several types, the worst being mast cell leukemia. I wouldn't want you to miss something serious. The low histamine diet I posted was from the Mastocytosis Society, so yes, diet can help that. Sometimes medications are also needed, depends on how severe the problem is. Triggers for mast cell release are not only food but weather, stress, activity, bug bites or stings, surgery, medications, the list is different for each person. (Hmmm, sounds kind of like what triggers fibromyalgia symptoms, too!)
Thank you to everyone who posted and shared! I was feeling discouraged this past weekend, but I know now that there are many of us who would discuss dietary information intelligently and non-divisively if given the freedom to do so.
I'm holding out for the fecal transplant if they ever offer it to Fibromites with "co-morbid conditions", which purportedly will make taking probiotics a thing of the past.
Fecal bacteria is the new frontier. :)
Posted 11/4/2013 1:42 PM (GMT 0)
Namian, one more thing. Years ago when I developed the sudden 24-7 tinnitus and hearing loss, my ENT told me that whatever I ate would affect it. At the time, I wondered why he said this because I could not see a link to diet.
Recently I noticed when I was strict with the low histamine diet, my tinnitus became really quiet.
I would have to test this repeatedly to see if that's the total fix because weather tends to either tamp it down (low pressure systems) or ramp it up (cold and high pressure). But nevertheless, I never forgot what I was told, and I intend to test this to see how much permanent relief I can get with diet.
Unless one has experienced the loud screeching tinnitus that never turns itself off, one cannot know how stressful and distracting it is. When I got this so suddenly, I thought it would go away. I never dreamed 7 years later, I would still have it, and to a certain extent have learned to live with it. It hasn't not driven me to insanity as I at first thought it would.:) My favorite pastime is reading, though, and it makes locking onto the subject matter difficult at times, creates a kind of ADD. And it is a further hindrance to sleep even with white noise. White noise does not block it out but gives my brain something else to listen to, and that helps to sleep.
I don't know if you can relate but thought I'd throw this out there for you and anyone else dealing with tinnitus, to play with your diet to see if there are any food triggers.
Posted 11/4/2013 1:58 PM (GMT 0)
High sodium can do that, too. I have had tinnitus for over twenty years. It comes with my autoimmune inner ear disease. If I eat too much sodium...which I rarely do...the noise gets louder.

People who have Meniere's disease have the ringing, too. Too much sodium causes some of this for them, too.

Sherrine
Posted 11/6/2013 9:48 PM (GMT 0)
Yes, Sherrine, Meniere's can be helped with low sodium possibly due to sodium causing fluid retention? Allergy testing is recommended for Meniere's and immunotherapy if allergies are found. I don't have Meniere's, and I had to bump my salt intake up due to low blood pressure causing POTs symptoms, and it has helped.

How was your autoimmune inner ear disease diagnosed, do you mind my asking?

Mine is "idiopathic" as it came on suddenly, first the L ear went way down, then it came back some and the R ear went down. Both ears eventually ended up with about the same amount of hearing loss, but tinnitus is only in the L ear.

I think anything that excites the nervous system can ramp up the tinnitus. This could be MSG or anything one is sensitive to. So perhaps that's why my ENT said what I eat is going to affect it.
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