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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Triggers >> Water, anyone? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1355075699 Message started by PepperPOTS on 12/09/12 at 05:54:59

Title: Water, anyone?
Post by PepperPOTS on 12/09/12 at 05:54:59

I know I've seen PamH write about reacting to water and my local doc also mentioned it. Here's my experience thus far...

After my initial appointment with my local doc, when he said I should *never* drink tap water again, I went out and bought a ton of bottled water. For about a week, I only drank it and no tap water and didn't notice a difference and started thinking that it probably wasn't a trigger for me. So, I went back to tap water.

Now, after getting some more of my symptoms under control, I'm noticing that after I down a glass of tap water to take my cromolyn sodium, I often feel mildly wheezy, itchy, tight, and stuffy in my throat/nasal areas, so I'm reconsidering water as a trigger.

Previously, when purchasing bottled water, I bought Dasani. It has added minerals (or added *somethings* - I can't remember what right now). Maybe I didn't notice any improvement in symptoms because I was also reacting to the added stuff in Dasani. And, I don't always react when I drink tap water, so that adds another fun factor to the mix! ;)

Long story short, I'm wondering what brands of bottled water others might've had success with because I think I might give it another shot. PamH? Anyone?

Also, my local doc said to stay away from water bottles made from polyethylene (like the jug kind with the handle you can get at Walmart for around a dollar) because they can trigger symptoms. I had a good laugh with my husband after that appointment when we got my Gastrocrom filled: I read on the insert that the ampules are made from polyethylene. ;D This doc made several questionable statements during my appointment, so I don't know whether this is valid info. Just thought I'd share the ongoing humor I try to find in MCAS. :)

Title: Re: Water, anyone?
Post by iamnotalone on 12/09/12 at 08:42:32

Pepper;
I know this may sound nuts, :D, but I don't like the taste of Dasani. I know- my husband gives me that "huh?" look when I say I can tatse different waters. We had city water in our last home. It tasted so strongly of chlorine, it burned the throat. Several neighbors also noticed this. Now, we have a well, & I can taste the minerals in it, (yes we use softener). SO; I drink bottled water. Ice Mountain is a pretty good price at Sam's Club. I keep it in the house during the summer because of plastic vs. heat/sunlight. I keep it in the garage during the colder months. With all the antihistamines we take it's a given we need to stay hydrated, so good luck pepper, try a couple different brands in single bottles first, til you find the 1 that's right for you. :)
good luck ,
lori

Title: Re: Water, anyone?
Post by KatFromMD on 12/09/12 at 09:12:12

Rather than dealing with the expense and waste and plastic issues of bottled water, have you considered getting a filter? I've been thinking of getting a whole house filter, but as it is I have a filter on the shower and one in the refrigerator, and that's the only water I drink. I fill my own reusable water bottles when going out somewhere. My aunt has a filter under her kitchen sink, with it's own small spigot (where a sprayer might go on the sink) just for the filtered water. Sure, a high quality filter still isn't as good as reverse osmosis, but it's definitely as good or better than most of the commercial bottled water you can buy.

Title: Re: Water, anyone?
Post by MarciaB on 12/09/12 at 09:59:28

I don't know if water is a trigger for me but I'm very sensitive to how it tastes. I use Crystal Geyser or distilled nowadays. And I only buy gallon containers. I could taste plastic in those small bottles. I add Concentrace trace minerals to each glass.

I don't like drinking from plastic either so I only use glass at home.

I've found that I like the taste of water better if I rinse my drinking container out with lemon juice and then tap water first. I'm guessing it gets rid of whatever dish soap might be left.

A whole house filter would be great but as a renter it's not an option.

Tc ... Marcia

Title: Re: Water, anyone?
Post by brethor on 12/10/12 at 02:35:43

Actually water is one of my biggest triggers :( I get major rashes and flushing, shortness of breath and always have to medicate before a bath or shower. I am also very sensitive to bottled water so I have filters on all of my taps at home. In my case it has made a noticeable difference. I also have POTS/Hypovolemia so staying hydrated is crucial but it is even harder now with all of the antihistamines...I am really struggling....I just started with coconut water and find it is good as an alternative to the yucky gatorade ;)

Bren

Title: Re: Water, anyone?
Post by PamH on 12/10/12 at 04:32:50

Hi,
I was told by someone on the Salicylate forum to try a distilled with out minerals. It worked! My osmossis system and all bottled waters were making me react. I couldn't understand why filtered water would be a problem for me. I was told that the filter itself is probably causing some of the problem....wow sounds crazy. Distilled water is the cleanest I have found (without the mineral added). Now I do buy it in the jug that looks like the milk jug and have not had too many problems... I have tasted the jug if it sits in the car during extreme temperature changes. I try to keep water in the car at all times. If I can taste the jug, I don't drink the water.
Good luck!

Title: Re: Water, anyone?
Post by PepperPOTS on 12/10/12 at 05:39:44

Thanks, everyone, for your responses!

Lori, we have well water, too. Unlike you, we don't have a softener or any filter. We have safe (well, "safe" for average people!), delicious water without those, fortunately. I'm glad you found a water source that works for you! And, good tip about keeping the containers out of the heat.

Kat, yes, I agree that filters would be less wasteful than bottles. We recycle and I hate to generate waste/recycling. And, I'm glad to hear that filters work for you! However, like Pam, I had read that problems with filters can occur. I just can't deal with installing a filter system that could cause more problems right now. I'm *hoping* bottled water will be a short term help and that I can return to the tap after I get my symptoms better managed, overall.

Marcia, great thought about rinsing your glass before drinking! I'd wondered awhile back about dishwashing detergent residue. Maybe I should give that another thought!

Bren, I have POTS, too! I have the hyperadrenergic type. However, after seeing Dr Afrin and doing so much reading about MCAS, I think, for me, POTS symptoms are a manifestation of my MCAS. When first diagnosed with POTS, I salt and water loaded (soooo much salt and 2.5-3 L of water/day). In my case, it never did a thing to help. It is tough to manage. If you're seeing improvements from it, hang in there. And, if you're salt loading, too, and need any ideas on how to get it all in, I can PM you what helped me if you'd like!

Pam, distilled without minerals is what I thought I'd read in one of your posts. I'm going to try it. I'm glad to hear the milk jug, in controlled temps, has worked out for you, too. Thanks!

Title: Re: Water, anyone?
Post by MarciaB on 12/10/12 at 09:55:47

brethor wrote on 12/10/12 at 02:35:43:

In my case it has made a noticeable difference. I also have POTS/Hypovolemia so staying hydrated is crucial but it is even harder now with all of the antihistamines...I am really struggling....I just started with coconut water and find it is good as an alternative to the yucky gatorade ;)

Bren

Hi bren

I have pots too and I'm working on the dehydration angle as well. I definitely feel better from drinking coconut water but only from fresh coconuts. I usually add the meat to it in a blender.

The pre-packaged coco water doesn't work as well. I was wondering if you were using a pre-packaged and if so which one ? Fresh coconuts are a pita.

Also, I don't feel dehydrated from taking 25 - 30 mg of zyrtec daily but 180 mg allegra and 25 mg benadryl dry me out horribly. Nasalcrom did too. Have you tried these ?

I may even feel less dehydrated on zyrtec than I did prior to taking it but I'm taking it for angioedema too.

Title: Re: Water, anyone?
Post by MarciaB on 12/10/12 at 09:59:44

Hi pepper

I just keep a glass jar of fresh squeezed lemon juice in the fridge and re-use it until it starts smelling less lemony. Probably for 2 weeks. I use it to rinse my blender too.

I've gotten some great info here. Thanks for starting this.

Title: Re: Water, anyone?
Post by DeborahW, Founder on 12/11/12 at 09:09:53

I'm a fan of Ice Mountain water. No problems with that for me! Evan is also fine for me, as is Fiji water (although more pricey).

Title: Re: Water, anyone?
Post by Futurehope on 12/13/12 at 03:52:18

I have interstitial cystitis, and many of the bottled waters have too many minerals that "burn" my bladder. The only one I drink is Aquafina after someone suggested it on the IC forum I was frequenting.

Title: Re: Water, anyone?
Post by zippy890 on 04/14/13 at 12:59:03

Figi and Iceland Springs work well for me. Interestingly, the Iceland Springs seems to be low in deuterium. Now, don't get too bent over the deuteirum. It's not something to stress over, just a theoretical thing that is kind of interesting. It seems, esp. in people who are poorly buffered in terms of endogenous antioxidant capacity, deuterium might actually make an enzymatic difference, esp. over decades. You can search around and read about deuterium from the U.S. Geological Survey. Or was it Meterological ? I was surprised to see that deuteriated water does evaporate and precipitate, and percolate in soil, at different rates. You can also read about "Heavy Water" on Wikipedia. There is a biological effect at concentrations NOT found in nature. It is lethal, in fact. Allied Forces attacked the Germans during WWII to disrupt their supplies of deuteriated water, and hopefully stop them from achieving an atomic device. Quite an interesting read.

I'm wandering here. Sorry.

I also have a carbon filter on our faucet, which I can tolerate some. Otherwise, I distill most of my drinking water (WaterWise Home Distiller), and I add back a few minerals with Concetrace Drops that don't seem to bother me. It's a hassle, but I can't drink straight tap either. :(

Todd in Tenn.

Title: Re: Water, anyone?
Post by gnbailey on 04/14/13 at 14:16:21

I react to any water that has minerals added but I have good luck with Aquafina. I have even found that you can take your water through airport security if you tell them that you need it to take your medications. TSA will test it (without adding anything to it) and let you keep it. :)

Title: Re: Water, anyone?
Post by Bruce Hart on 05/14/13 at 18:51:19

I can't tolerate tap or plastic bottled water. I use glass gallon jugs and my mom fills them up at the reverse osmosis dispenser at the local grocery store. I think super center Wal-marts have reverse osmosis dispensers too, at least the one I went to did.

Here's the jugs I got: http://www.specialtybottle.com/jug-cleargallonglassjug128ozwblkplasticlid.aspx

It's cheaper that way in the long run too than to keep buying the expensive bottled water.

Or maybe you could look for some cheap reverse osmosis water filters for your home.