Mast Cell Disorders Forum

phyre

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Vitamin list
12/02/11 at 06:20:14

Since mastos have problems absorbing vitamins in general, I wanted to share what I have learned over the past 19 years. Please add anything you have learned. Please keep in mind that we are all different. What works for me may not work for you.

Vitamin D obviously: The first Dr that I went to about my rash found that my blood was low in Vit D. It looks like many of us have a problem absorbing or maintaning this vitamin.

Vitamin C: If I don't take at least 3000 mg of vitamin C per day, my gums and sinus get really sensitive to cold. I get sores in my nose, and I get spots on the top of my mouth. My nose bleeds constantantly sometimes. If I eat anything that is not soft, it tears up upper mouth. Ridiculous!

Folic acid: If I don't take 800 to 1600 mg of folic acid per day I get bacterial vaginosis and ringing in my ears.

Magnesium: I get muscle spasms and lots of headaches if I take too much calcium. Magnesium balances me out again.

Copper: I get wierd muscle pain that only goes away when I take copper. This is not like the kind of muscle pain you get from working out too hard. This is a dull ache - mostly in my legs. It takes a day or two for the copper to work, but it works every time.

Digestive enzymes: I take these to help build up my stomach lining. This helps you not to react as much to things you are alergic to.

Hope you are well!
Phyre

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iamnotalone

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Re: Vitamin list
Reply #1 - 12/02/11 at 06:48:26

Phyre;
WOW-300mgs of vitamin C a day! It doesnt upset your stomach?
Ive upped mine to 500mgs 3x a day. My gums are always sore and bleed since I got "sick"... I was wondering about Papya enzymes- used to take em years ago, but wasnt sure if its "safe". I dont remember seeing papaya on the no side of the low histamine diet- so maybe I'll try them. The last brand Id bought coupla yr.s ago had mint in them n couldnt take it. What brand do you get ?
thanks, lori

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Joan

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Re: Vitamin list
Reply #2 - 12/02/11 at 15:40:52

Hi Phyre,

I take almost everything you take, but a lower dosage of Vitamin C and Folic Acid. Do you know why the Folic Acid helps with ear ringing? I have bad ear ringing, which I thought was from the gastrocrom.

I can take 500 mg. Vit. C twice a day, if it's Ester C, but don't seem to be able to go higher. I started taking copper because I read that it's necessary for the breakdown of histamine in the body. I think it helps.

Which digestive enzymes do you take? I've found Bromelain to be very, very helpful, but I've been afraid to take some of the others. I know one is derived from a mushroom, and I'm allergic to them. (Some people shouldn't take Bromelain, because pineapple can be a mast cell degranulator.)

A bone metabolism doctor I saw told me to stop taking calcium supplements, since my bone density was normal, but to get enough from food sources. He said research is showing that people are having heart problems from longterm calcium supplement use. I'm going to ask him more when I see him again in January.

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gutless_mystery Tutor Offline I Love YaBB 2! Posts: 57 INDIANA	Re: Vitamin list Reply #3 - 12/03/11 at 01:47:33 I have to take nascobal nasal B12 once a week. This is because I don't have the part of bowel that absorbs B vitamins. It's more acceptable to me than having to get injected B12. It is quite expensive though...with my insurance it is $40/mo
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iamnotalone Mentor Offline I Love YaBB 2! Posts: 296	Re: Vitamin list Reply #4 - 12/03/11 at 04:21:59 FYI; I checked the low histamine diet, and besides pinapple, papaya is also on the NO side of the chart. Ive been taking 4000IUs of sublingual calcium daily for a while: think Ill cut back to couple times a week ! Sublingual B-12 is pretty inexpensive at some of the larger stores, if you can take it; about $4-$6 for 200 (500mcg.s). lori
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missybean

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Re: Vitamin list
Reply #5 - 12/06/11 at 05:59:27

Wow- The copper thing really interests me. That is exactly how my arm muscles feel, that feeling you get when you work out to hard. Thank you for mentioning that. My arm muscles fatigue just from folding 2 or 3 towels......pathetic right? I think I'm going look into this copper thing.
Digestive enzymes totally help me not be so reactive. I have tried several brands even the prescription ones. They all help that itchyness I get after eating.
I have had a problem with multi viatmins making me puke for years until I found ones made with whole foods work good and don't make me sick.
B-5 which helps support the adrenals.
You guys say your gums are sore and bleed, I used to have a massive problem with this. Do you floss? I used to hardley every do it because my teeth are so close together the floss would get stuck and it hurt like H. Once I found the right floss that fit I floss regularly and I hard bleed anymore and my gums aren't sore. Water pic is another option. Oh......or GSE (grapeseed extract), a couple of drops in a little water and swich it around in your mouth and spit it out. It is nasty but I have used it when I had an infected gum until I could make it to the dentist. Kills the bacteria and the pain was completely gone with-in hours. I swiched that stuff about every two hours the first day. You might have to swich listerine after to get rid of the GSE taste. It is powerful stuff but it works good.
Melissa

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Joan

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Re: Vitamin list
Reply #6 - 12/06/11 at 16:30:02

Melissa,

Are you able to drink enough fluids? When I get that muscle weakness/fatigue, extra fluids, especially with electrolytes helps. My doc told me to fill a jar with all the water I should drink in a day and to have as many glasses throughout the day as needed to finish it. It helped fatigue and muscle pain and low energy. I was so surprised! That might not help you, but it did work for me.

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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: Vitamin list Reply #7 - 12/07/11 at 00:55:27 Joan, that is a fabulous idea! I am going to do that! So....how much water do I need per day?
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Joan

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Re: Vitamin list
Reply #8 - 12/07/11 at 08:48:38

There are a lot of variables. I like the hydration calculator at this site:

http://nutrition.about.com/library/blwatercalculator.htm

It takes into account one's height, weight, climate, exercise, etc., and then calculates the amount per day. It also warns people with adrenal or kidney problems to check with a doctor before trying this, and reminds people NOT to drink it all at once, or it can deplete electrolytes and cause serious effects.

Foods contain liquids, too, so should include milk, juices, sodas, soup, etc., in the total. If I have another drink, I'll just empty an equivalent amount out of my bottle.

He didn't know why, but a lot of people don't feel normal thirst, according to my doctor. Over the years, there have been several docs who couldn't diagnose me, but who were able to pass along helpful suggestions to feel better. I'll always be grateful to them!

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phyre

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Re: Vitamin list
Reply #9 - 12/08/11 at 15:05:00

Umm! I did not know so many people replied. I thought I would get emails.

Thank you for your input!

Fortunately, I don't get sick as long as I don't take all my vitamins at the same time. If I don't take 3000 mg go vit c, the roof of my mouth get soft too. I told so many drs and they don't seem to know what it is. Another mystery symptoms. What's new? Wink

You may not need to take as much folic acid as I do for ear ringing, but you might need more than what is in a multi vitamin. It can't hurt because your body doesn't store folic acid.

I try to drink between 60 and 80 oz of water per day, but I still get this strange muscle soreness once every once in a while. I don't take copper daily - just when I need it.

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phyre

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Re: Vitamin list
Reply #10 - 12/08/11 at 16:18:44

I forgot to answer the digestive enzyme question. I don't stick to one specific type. They have multi-digestive enzymes. Right now I am taking one for the glutton intolerant. I am not glutton intolerant though. I have no idea which ones have mushrooms. Be careful!

I used to take bromelian, and I stopped cause after a while my blood got too thin. Bromelian is great for joints because it helps to break down protein, and it is a natural anti inflammatory.

Papaya enzyme is good too. Enzymes are the best thing for building up your stomach lining and reducing reactions.

That is really interesting about copper and hystamines. Thx

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