Chlorinated water issues?

[Melonlover]

Hello,

I'm new to the group and can honestly say my heart goes out to anybody else who really suffers with a Mast Cell Disorder because although I have not yet got a confirmed diagnosis I strongly suspect that I have MCAS and that in my case it may well be hereditary as my mother had nearly identical symptoms. I like so many others in this group am suffering BIG time with the horrendous symptoms and the NHS Dr's I feel have been so unhelpful and of course, I couldn't possibly know what the problem is!!! It's stress etc etc. I have said to them all along yes that may be true to a certain extent but I think there is something else going on. I have had lots of tests all have come back negative. I have multi organ involvement and have been in an out of hospital etc over the last 3 years. The pain at times is just unbelievable and to still have no help at all I really just don't know what to do. I have tried just about every avenue I can think of to find some help with getting a diagnosis.

I have got multiple diagnosis along the way ranging from Fibromyalgia, to Bipolar etc. I personally don't think they are correct, but what do we know about our conditions? I have been through absolute hell with the medics as I am sure so many of you have been to reading some of the other posts.

Last autumn I started to have really bad problems with foods and water. Most foods cause me issues and water well I can no longer drink it by the glassful like I used to. I have to take it by the sip. I would be intersted to know if anyone else has a similar problem?? If so what do you drink????? I seem to be so reactive at the moment to just about everything. I can tolerate filtered water slightly better, but not a lot really. I have read that some patients with MCAS can react to chlorinated water. I have tried things with regards to the foods like lower histamine diets and nearly wasted away. The end result being a trip to hospital having to have fluids etc. I have just about every symptom going too. Gut issues have settled a bit with anti-histamine 1&2 blockers. The pain, itching and burning too much to bare at times. Has anyone got any ideas how I can start to move forward with my life with this suspected illness? To be honest everything is so broken now I really don't know what to do for the best. I'm so sorry this is so long, but I'm completely at the end of my tether with all the reactions to multiple chemicals, foods+ water, drugs, strenuous exercise, uv light etc etc. I am fast becoming a recluse now. Any thoughts would be gratefully recieved.

Thank you.

[Medigirl]

Cannabis. It’s the only thing that’s saved me.

[JayCeon]

Hi there - I don't tolerate water well, whether showering or drinking, incl. only small amounts of tea (luke warm, otherwise I quickly burn my tongue). Some alternatives with water in them strangely work, but basically I can drink nothing but almond milk. I get heartburn from rice and oat milk, and I've stopped soy milk cos of histamine, but it's OK sometimes.

For these whole conundrum of conditions, I've sided mainly with fibro and MCAS to explain most symptoms, but there's 4 other fairly big ones that need quite some attention.

My best decision was to minimize things that docs recommend and do things myself by analyzing each symptom, finding out the many triggers of each and trial loads of treatments, loads of supps, specific exercises, minimizing triggers in food and environment. (Even stopped my antihistamine again, cos I realized it was causing more problems than it was solving.)

I get that a low histamine diet can take our appetite, I had a similar effect, but not from histamine, but from TCM recommendations and trying a speck of T4. I think there it's important that we look for more things we like eating, so I look at the (SIGHI) histamine list to remind me of things that are OK to eat, and I trial each food to see if it does work even if it's high in histamine, no list can assume it is "right" for us, that's extremely individual. I have 50 foods/drinks and rotate them all the time, putting in bits'n'bobs of things I know are dangerous for me. Sometimes even walnuts altho my tongue burns for 3 days after. Some people take DAO 20' before every meal to keep the food reactions down, I only when I'm gonna be risky.

Oh, it just occurred to me that more liquid foods can be a good alternative to drinking too, like yogurts. I only tolerate 100ml of soy yogurt, but almond jogurt and to get my appetite back I've returned to dairy incl. sheep and goat. Or adding a bit more olive oil or coconut oil to my veggies in case I cook. I can tolerate green beans and strangely even baked beans, but not usually white or red or other beans....

You haven't mentioned supps - my go to are Bruce Hoffman's hoffmancentre.com/natural-treatments-for-mcas/ Hardly any risky ones there, but anything can be a problem, incl. of course fillers and capsules. Cellulose is OK for me, so I make sure I get just that and nothing else in mine.

Plus for me personally, the neurotransmitter GABA is a good help for many things as I have low serotonin, it helps me with many fibro symptoms, like bladder pain, it reduces histamine and my focal seizures. But GABA is a science/art in itself, Trudy Scott can help a lot on that journey or just knowing your body.

Is that any help?

[Bilka in reply to JayCeon]

H, just a suggestion, perhaps you can benefit from an advise from nutritional therapist, regarding food/drinks. Chlorine normally would evaporate if glass of water left on the side for like half an hour or boiled ,then cool down and refrigerate if you like t drink cold.