Negative For Mcad But Have Symptoms?? Hope!!

[Godsgal]

I want to tell you about something that I am researching that is really fascinating me. I went on a strict histamine free diet a couple of months ago and my symptoms have been markedly better. All my POTS symptoms.

All the eczema I had on my hands and knees is completely gone. I no longer get hives, rashes, it's really amazing. The random tachycardia, flushing, breathing issues, adrenaline surges, all this POTS craziness has been SO MUCH better for me. I had all the symptoms of MCAD but when I found out there is no clinical evidence for me to have MCAD I didn't understand why I was getting so much better. And I also didn't understand why certain foods were affecting me so much and giving me so many setbacks. SO....I found something called histamine intolerance on the internet.

A lot of the symptoms of histamine intolerance are ones that a lot of us on here suffer-----low blood pressure, blood pressure drops, tachycardia, breathing issues, GI problems. There are a lot of significant ones that sound like a lot of us here. GET THIS.....I learned that histamine intolerant people can have adrenaline surges. When I saw that, I couldn't believe it!!!! Maybe a lot of us on here would feel better if the histamine free diet was started. A lot of foods have high levels of histamines and also a lot of foods can cause them to be released from the body. I know it's changed my entire life for the better!!!! I also know a lot of people on here take antihistamines and feel better.

http://www.histamine-intolerance.info/

Here is the site to read about the symptoms.

http://www.ajcn.org/content/85/5/1185.full

http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

This is one of the links for the diet......I have found on other sites though that nuts have histamines and that bananas release histamine in the body so I avoid those as well. It's a hard diet but I've gotten a big part of my life back.

[juliegee]

Hi Jared-

Thanks for sharing all of this. I find it fascinating. So happy you are having a relief from your symptoms. I haven't thoroughly read all of the links you've provided, but plan to... You are definitely on to something here.

I constantly question my MCAD DX, as it's made based upon clinical signs, my history, how I respond to meds, etc. If I were simply histamine intolerant; that wouldn't explain how SMELLS or STRESS could set off an attack- could it? Have you come across any thing addressing this in your research?

Regardless, I suspect that a histamine free diet would be helpful to those of us with mast cell disorders. Although I'm not aware that I have a reaction to any of the histamine rich foods, were you?

Thanks for sharing-

Julie

[Godsgal]

Julie,

It's my understanding that mast cells contain histamines.....and that would be why anti-histamines help a person get better. In my research of histamine intolerance, one place noted to avoid massages because that can cause a release of histamines in the body. The body constantly releases histamines and tries to digest them. Foods contain them and some foods can release them from mast cells. As we both know, certain triggers like stress, lights, perfumes, etc. can cause an attack because it is causing mast cells to degranulate and releasing histamines. Well, in this research it shows people that are histamine intolerant do not have a certain enzyme to break down histamines. This enzyme is called DAO....diamine oxidase. Certain foods also have DAO blockers. So if you triggered a degranulation of mast cells by stress, exercise whatever, and you didn't have the enzyme, there comes all the symptoms that a lot of us get.

[Godsgal]

Oh...on the food question, Julie, some histamine rich foods affect me a couple hours later and some affect me pretty soon after eating. And I just rid the last thing from my diet yesterday with a histamine affect....nuts....and my adrenaline surges are amazingly better.

[juliegee]

So interesting. Can one be tested for the lack of DAO enzyme? Can DAO be replaced?

Forgive me, more questions- you've piqued my curiosity So, if an odor, for instance sets off mast cell degranulation that can't be attributed to histamine intolerance....or can it? I suppose it can, BUT the diet alone won't address or fix that- right? So, odors, stress, etc do NOT trigger you? Have they ever? Do you still have to take antihistamines?

I would love to try the diet to see what would happen, but have the feeling it won't fix all of my issues Hope I'm wrong. I'd love to stop taking so many meds.

Thanks for sharing. Fascinating stuff!!!

Julie

[lieze]

Thank you so much for sharing your findings gods gal.

Based on this I have just made an appt with an allergist and I am also trying to get into see a dietician.

I realize my last ER trip was just after guzzling orange juice to raise a low blood sugar which I see is on the no no list for high in histamine.

my symptoms after were horrible, knees got wobbly and about gave out on me, lightheadedness, irregular heart beat, shakiness, I had weird noisy patterned respirations I wondered if were stridor, I was losing alertness, could not remember my kids ages, and felt like I was going into respiratory arrest.

Can you give a basic list of what you do eat?

I'm really curious because my safe food list is so so limited right now and I am barely able to consume enough calories to sustain me.

I am hanging steady right at 90 pounds.

[firewatcher]

The histamine-free and migraine-free diets are almost identical. I've had several friends attempt to do this diet to get rid of migraines. It is hard, but it worked for them. The kicker is that you can't pre-cook any foods, left-overs are a huge histamine producer!

[issie]

THANK YOU! THANK YOU! THANK YOU!

All along I've been knowing that food has a play in things and felt that food allergies were a key to part of the problems. I've been off of glutten, sugar and dairy and that has helped allot. Last night I ate some pecans and had a major reaction. I had to hurry and take allergy meds because my throat started feeling weird and my face started going numb. So, I had decided that nuts were not good for me either. I've always known that the night shade family was an issue (tomatoes, potatoes, peppers etc. - they make me hurt more) and can't drink alchol and especially wine. Can't eat salad off of a food bar because of the sulfites they put on the lettuce to preserve it. Morphine is horrible for me and it does nothing to help with pain. Since having my hysterectomy and not having periods and not using all the estrogens or progesterone as replacements - much better. (one of the articles showed that estrodiol can cause a release in histimines as can progesterone. I never knew why if I even used a natural compounded progesterone - I had hot flashes, flushing and felt awful. It was supposed to do the opposite.) If I use estrogen it is the milder form, compounded estriol. If I eat chicken or anything from the bird family (I test positive for an allergy to these.) I itch and feel bad. I know that I don't digest protein properly and had decided that I needed to use enzymes and probiotics to help my gut ecology and to digest foods better. That is one of the things suggested for this.

One of the diet things that is suggested for fibromylgia is no sulfites. I tried that diet, but wasn't able to do it completely - so it didn't work for me. But, it makes sense that it would be beneficial since it can cause a release of histimines. I've never done well with citrus.

Oh......so much of it makes sense. Okay, now if we can just figure out - and do- what we need to do to see if this will make a difference.

Thanks for sharing this with us!!!

[lieze]

Okay well right now this is all I am able to tolerate period...that I know of....

ensure but I can only handle about 1 1/2 per day....too much and my bp and or heart rate goes too low from the magnesium....I think

milk

yogart

banana

egg (I sometimes have trouble with)

bread (I sometimes have trouble with)

apple

peaches (last time I ate them I had a reaction last bite) but I had done well the past couple weeks....may back off

pudding

applesauce

a little cheese but sometimes notice a reaction ( i do okay with the kraft pasteurized type)

corn chips

gatorade

that's about it guys I'm desperate to be able to add more foods to my llist

my skin actually feels itchy right now on my face and neck---there is no visible rash and I

know this is gross but I have not used soap there

If I would try to eliminate dairy and gluten at this point there would be nothing left for me to eat I'm afraid

I do feel a bit better just a bit stronger on this limited diet.

I am not having the huge dramatic episodes where I feel like I am suffocating.

[Sarah4444]

This is really interesting. It makes me wonder if MCAD could be some combination of something causing mast cells to degranulate too easily with triggers such as stress, smells, foods, etc. and then also an impaired histamine metabolism?

[issie]

apple

peaches (last time I ate them I had a reaction last bite) but I had done well the past couple weeks....may back off

applesauce

corn chips

gatorade

According to the list that was in these articles this is all that is okay that you are doing. The ensure is either milk or soy - so that's out too. You are not getting enough protein. You have to have protein to live. Also, you don't have any green vegies or any other type for that matter. Vegetables, most of them are okay on this diet. There are allot of people sensitive to corn - so don't know if that's an issue or not. You have to consider how they are prepared and what type oil too. If you eat the same thing every day - you WILL develop a food allergy to them. It is best to rotate foods every 4th day. Like if you eat apples today - don't eat them again until the 4th day.

I had a doctor tell me one time that I should boil the meat and then throw it away and only drink the broth out of it. That way you get the protein and your digestive system doesn't have to break down the meat. Back then I wasn't digesting protein properly either. Still not. It is going to be a challenge for all of us - if we decide to try this. Here's hoping that you can find some things that you can eat.

Figs were okay on that list. I know they are supposed to be really good for you.

[skiberthoud]

Thanks for sharing this great research! And Issie, I thought of you as soon as I read it!!!

[lieze]

I'm not able to eat anything else.

Haven't done well with meat I know potatoes and peas are out.

So fruits and dairy, one egg and one piece of toast is all I can eat.

I've lost 10 pounds and without the ensure and diary I'm afraid I would be severely anorexic and malnourished.

As I can replace those items with other foods I'm willing but until then I don't have much choice but to eat them if I want to live.

[firewatcher]

A couple things about the foods on these diets:

***they are super-high on potassium rich foods*** WATCH your sodium intake, make sure it is enough, the potassium will cause you to dump the sodium!

If you look into Chinese food therapies, all these approved foods are cool or cold in nature and focus on the lungs and lung support. You may end up with diarrhea and other odd ailments. My Oriental Medicine doc evaluated me, and told me to avoid almost every food on the approved list and eat LOTS of the stuff on the no-no list. Actually, I feel better eating the banned foods.

[lieze]

I'm wondering about that Firewatcher if we all have to find our own list of approved foods.

I can't live without my dairy....

I don't have a problem with reading food labels....watching for preservatives that could be setting me off but I am in such a dangerous situation weight wise right now if there is a food I can tolerate I don't have a choice right now but to eat it.

I feel like I need to listen to my body and instincts and slowly try to add other foods, one bite at a time.

[Godsgal]

Before I started eating the histamine free diet, I was so sick and losing so much weight because I couldn't tolerate food. I understand about getting so small but when I started this diet I was able to tolerate more with less digestion issues. One thing that has been great is that my intolerance to sunlight and certain lights has gotten much better since starting to do this diet. Before I restricted my histamines, I couldn't even let sunlight or fluorescent lights touch my skin or I would start flushing, tachycardia, diarrhea. All that stuff is a thing of the past for me now. It's wonderful.

http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm This is the link to the diet. The only thing about this is the nuts. I read on another site that nuts and banana are a problem.

I followed this diet to a "T" and it has been great. Yes....I still get some strange reactions to strange things sometimes but they are a lot less often and my resting heart rate has dropped a lot as well along with the pesky adrenaline surges.

I started losing so much weight I was very concerned about dying too. 4 pounds a week. And that was eating plenty of food! I have been able to maintain my weight and have gained 2 pounds so that is nice.

Everyday, I eat fresh fruits, fresh or frozen vegetables, olive oil, only all natural seasonings with a ton of sea salt of course. I eat raw honey, fresh cooked meats, and eggs. That's it. That's all I eat. It's really tough sometimes but everytime I cheat, I suffer.

[Godsgal]

I don't think anyone can be tested for the DAO enzyme and what I read about this issue is that the recommended treatment is doing a histamine free diet and seeing how you react. There is a supplement called histame that supposedly supplements this enzyme but there is little known about whether it works or not. Google histame and I think you can read testimonials about it. I have read that everyone has their own personal allowed histamine threshold, certain people can tolerate more than others. Kind of like being lactose intolerant. Some people can tolerate yogurt and some people can't touch it. Again, an enzyme that digests lactose is lacking. For me, the diet has gotten rid of a lot of triggers for me.....sunlight and lighting. They are a lot better than they used to be. And I don't take histamines. Chemicals like in hairspray or perfumes still bother me so I avoid them. And if an odor triggers mast cell degranulation, then histamines are released. And if you are histamine intolerant, you will have symptoms because the mast cells are releasing histamine and you have no enzyme for it. I'm on a really strict diet and I feel human again, thank God. I would recommend you just do it. Desperate times call for desperate measures. I have to live a long life for my boys. If I never eat chocolate again, so be it.

[Godsgal]

Hi Lieze,

You asked for a basic list of what I eat. I will tell you that I stopped losing weight and actually gained 2 pounds. Everyday I eat around the same things: fruit for breakfast...any allowed fruit. I can eat eggs so I have those with veggies cooked in. Fresh cooked chicken, turkey, or beef. All my stuff is cooked in olive oil. And I will put olive oil on my salads with herbs. All commercial salad dressing has vinegar (no-no). I have found that the olive oil, eggs, and avocado I eat everyday has helped stabilize my weight. That plus not vomiting or having diarrhea helps too I also can tolerate rice. I eat honey and rice milk. That's it. I eat nothing out of a box (except rice) and all my produce is fresh. I don't use any seasoning packets or canned stuff. None of that. I just avoid the produce that is high in histamines. I don't eat dairy b/c I'm allergic. It's a tough diet but feeling like my old self and not feeling like I'm going to die in front of my kids is worth it. Hope this helps you. And if you need recipe ideas let me know....I've had to learn how to be creative!

[lieze]

I'm so glad that you've found something that has helped you.

[issie]

I agree with you, when you're in an anorexia state - you have to eat what your body will allow you to. When my sis started recovering from it, she ate allot of dairy and eggs. In fact, the first thing she ate was egg whites and she continued on from there. Try, drinking the meat broth. You can get allot of protein that way and you will digest it. Try making fruit smoothies and drink them and add either rice, hemp or whey protein powders to them. Take probiotics and enzymes. You can take the probiotics any time, but when you eat take the enzymes - get a full spectrum one that covers all the foods. Right now, with the place you are - don't do this drastic diet. You're body is in too bad of a nutrional state and you MUST eat - whatever - you can. My sis also ate a whole lot of broccolli. She craved it. Have you tried that? Hoping for you to feel better. I went through this horrible illness with my sis and it was hard on every one. I watched as my sis slowly was dying and watched as she returned to us. It was a long, hard and painful process. Hang In There - you CAN do it! Anorexia is a HORRIBLE disorder and hard to get a handle on. It will throw your hormone levels off and it is difficult to will yourself out of it. She took five anabolic steroid shots and that helped her to start eating. I think I've told you about these before. It might be beneficial to you.

[issie]

There is also a pea protein powder that I just read about. It's supposed to have more protein and nutrients than whey and cover more of the nutrition requirements.

[skiberthoud]

Just a side note. When my oldest daughter had her allergy testing done, she had the Serial Endpoint Titration testing. The first thing they titrate is histamine to see histamine tolerance/intolerance. Hmmm...

Don't know how this adds to the conversation but I just remembered that...

[lieze]

I wondered about that....I am going to the allergist in April....and I am trying to get in with a dietician also...

I'm not sure it's just histamines I'm reacting too I think it may also be glutamate....

For people that have MSG allergies there is also a protein called glutamine.

Glutamine breaks down to glutamate in the body, meats and beans and peas which I don't tolerate well at all are high in glutamine...

Milk and eggs are relatively low and maybe why I can tolerate them.

[Godsgal]

Milk and eggs are allowed on the diet. It's just being cognizant of what you're eating and avoiding the stuff high in histamine. Like spinach....I used to eat spinach salads. Now I use romaine instead.

Hope everybody has a great day today! Praying for everybody's wellness!!

[songcanary]

Godsgal,

I am SO glad you posted this topic. I had been doing my own quiet research into this very thing a while back but got sidetracked along the way. I have multiple food allergies and I am really good about avoiding my trigger foods. But quite often I would have a reaction and know for a fact that I did not eat a known allergen. I would think 'what?????'. I have generalized itching and hives. As I am studying the diet I can see that this may be very helpful. There are many foods on this list that I eat because they aren't known allergens, but they sure do have the histamine! Looking forward to relief. Bless you.