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The Whole Sordid Story, Near As I Can Figure Out


The Fluffy Assassin

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The Fluffy Assassin Enthusiast

This started out as a gigantic email multisend to everyone I know; if I accidentally forget to clean up some of the more obscure personal references, I apologize in advance.

Four months ago, I made a lot of dramatic changes in my diet: gave up soy, dairy, and fruit and fruit juices, replacing the latter with filtered tap water. From this date I started having an array of weird symptoms. Air burps all the time that I couldn't remember doing before, an array of diabetes symptoms (great thirst, making water like Niagara, unexplained weight loss), pins and needles in the hands and feet, and feeling GREAT for two days at a time and then feeling awful for two days at a time. Being a rocket scientist and everything, I kept changing my diet again and again. Every time, when I felt GREAT, I'd ascribe it to whatever change I'd just made, and when I felt bad, I'd make another dopy change.

(The fruit and fruit juices are where the "thinking like an American doctor" part comes in. I was getting the runs every time I ate fruit or drank fruit juice. Rather than wonder what would cause this, I just treated the symptom, like an American doctor would (though s/he would have given me a pill) and cut out fruit and fruit juices, also posting foolish stuff here about being a fructose malabsorber. If I'd worked harder at the time to figure out why, I might have saved myself an emergency room trip, a lot of money and a goodly number of grey hairs.)

By September, the bad days were getting really bad. Really, really bad. Leave a note on my computer for whoever found my body before going to bed bad. I was increasingly convinced that I had diabetes, but had my dad (a doctor and a diabetic) test my fasting blood sugar and it was fine. I went to the emergency room in the middle of the night because I really was convinced that if I went to sleep I wouldn't wake up. Mercifully, it was the quietest wee hours Friday night that any downtown emergency room has ever seen, so they were willing to see me and test me. As I said, they found my thyroid stimulating hormone was high, meaning that I was hypothyroid. The very nice young doctor suggested a clinic I could go to and recommended I do so within the week.

A week turned out to be the soonest that I could get an appointment, so I set to work. I cut out all the goitrogens in my diet (which were many: broccoli, cabbage, kale, turnips, peanut butter, millet), restarted my multi-vitamins which I'd just stopped (they have 100% of the RDA for iodine) and started salting my food. By the time of my appointment, I felt vastly better. My TSH levels came back normal and they declared me cured and sent me along on my way.

Unfortunately, most of my weird symptoms continued, including the uncontrollable weight loss. So I thought back. I thought back to quitting fruit juice in July and substituting tap water. And doing all my cooking, including vast quantities of potatoes, rice and steamed vegetables, all with tap water. Through all the dietary changes, my symptoms had stayed the same and the only other thing that stayed constant was my high tap water use. Crazy people on the Internet (hereinafter CPOTI, present company most definitely excepted) indicated that many people who, like me, have Asperger's are highly sensitive to fluoride. So a month ago, I started buying reverse-osmosis purified water by the gallon, and quit using tap water for anything but washing. And saw a miracle cure. All my weird symptoms went away (except for the pins and needles, which still come and go, but they've certainly become much milder).

I have done other things to get the thyroid going, notably eating much, much more seafood. And I might note that a lot of my lifelong or near lifelong symptoms fit in with fluoride sensitivity, fluoride poisoning or skeletal fluorosis. The spectacular indolence, that other word that starts with 'I' but is usually abbreviated E.D. these days (see? I can be discreet), stiff neck and stiff back making it impossible for me to sit up more than a half hour at a time--all these fit in, and all seem to be getting better already. Puberty at 47 is an interesting experience; second puberty kicks butt all over second childhood anyway. (Well, sort of discreet.)

Current problems are a laugh by comparison to two months ago. Astonishing quantities of earwax and a touch of, uh, let's just say diaper rash. CPOTI suggest that both are associated with candidiasis, which medical science doesn't recognize as something that causes any problems. As the CPOTI have been good to me and as their prescription is cheap and delicious (eat yogurt), I'm inclined to cut them some slack. In general, I'm more inclined to listen to anybody, even the CPOTI, if their suggestions are cheap and easy, preferably delicious, and can't possibly hurt.

What do I bring all this up? A lot of us (me included) post that, "Whatever I eat, I'm still getting sick." (In my case, there are eleven exclamation marks after that sentence, but the rest of you are much cooler.) And what I want to suggest is that if this applies to you, that you think about what you drink, and what you cook with. Because in avoiding gluten, we tend to cook at home much much more than the average person does, and we tend to eat a lot of rice, potatoes and gluten-free pasta. I sense that I'm not the only one here cooking all this stuff using tap water. If you're in the US or Canada, your tap water is probably fluoridated. (Exceptions, if I recall correctly, are San Diego, Santa Cruz and Long Beach.) Though the CPOTI suggest that fluoridated water is the cause of all the world's ills, or at least thyroid problems, I'm perfectly happy with the idea that it's safe for drinking. However, even the sites in favor of fluoridation note that it's safe at the appropriate concentrations. Which suggests that cooking it down, say to make rice, might lead to one getting much more than the appropriate concentrations. (Others including the not particularly CPOTI Natural Resources Defense Council suggest that the greater danger is from fluoride toothpaste. I don't particularly have an opinion on this (though I did throw out mine in favor of Tom's of Maine to be on the safe side), but pass it along as it's certainly possible).

Regardless, you might want to try using purified water for drinking and cooking if you've ever felt low-energy, if you've ever had trouble losing weight, if you've ever had back or neck stiffness (ok, that's everybody, but still). Reverse osmosis filters for home use are said to run $200-300 and also apparently increase your water bill pretty markedly. (Activated charcoal filters are useless at removing fluoride.) So getting the bottled version (labeled Purified Water everywhere I've looked) at $1/gallon might be a better alternative. I get mine from Target because it tastes the best, but you can find it practically anywhere.

Also also, pets have thyroids, too, and a lower tolerance for fluoride, being smaller than us. Giving Amelia the cat, the fluffy assassin herself, purified water has practically rekittenized her. She flies around, she plays with shoelaces, she demands that I throw her her ball. So if you don't get the water for yourself, at least consider getting it for your pet or pets. They will thank you. Granted, they will thank you by keeping you up half the night, but it's a joyous kind of sleeplessness, isn't it?


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jerseyangel Proficient

Interesting--I'm glad you figured it out :D

I too, had a problem with--of all things--water. In my case, it was the filtered water that was making me stay sick. (I suspect coconut hulls, which are used in most water filters, since I'm intolerant to coconut) I use unfiltered tap water for cooking, but only drink spring water--including using it to make tea. When I made the switch, the change was dramatic.

Jestgar Rising Star

Out of curiosity, did you contact your local water district to get a report of the fluoride (and other chemicals) in your water?

OliveBranch Apprentice

Should one only suspect fluoride problems if one's thyroid is also shown to be not working well, or can it also wreak havoc and leave the thyroid okay? I have pretty major fatigue and neck pain still, but my thyroid has always been normal when checked (many, many times).

This started out as a gigantic email multisend to everyone I know; if I accidentally forget to clean up some of the more obscure personal references, I apologize in advance.

Four months ago, I made a lot of dramatic changes in my diet: gave up soy, dairy, and fruit and fruit juices, replacing the latter with filtered tap water. From this date I started having an array of weird symptoms. Air burps all the time that I couldn't remember doing before, an array of diabetes symptoms (great thirst, making water like Niagara, unexplained weight loss), pins and needles in the hands and feet, and feeling GREAT for two days at a time and then feeling awful for two days at a time. Being a rocket scientist and everything, I kept changing my diet again and again. Every time, when I felt GREAT, I'd ascribe it to whatever change I'd just made, and when I felt bad, I'd make another dopy change.

(The fruit and fruit juices are where the "thinking like an American doctor" part comes in. I was getting the runs every time I ate fruit or drank fruit juice. Rather than wonder what would cause this, I just treated the symptom, like an American doctor would (though s/he would have given me a pill) and cut out fruit and fruit juices, also posting foolish stuff here about being a fructose malabsorber. If I'd worked harder at the time to figure out why, I might have saved myself an emergency room trip, a lot of money and a goodly number of grey hairs.)

By September, the bad days were getting really bad. Really, really bad. Leave a note on my computer for whoever found my body before going to bed bad. I was increasingly convinced that I had diabetes, but had my dad (a doctor and a diabetic) test my fasting blood sugar and it was fine. I went to the emergency room in the middle of the night because I really was convinced that if I went to sleep I wouldn't wake up. Mercifully, it was the quietest wee hours Friday night that any downtown emergency room has ever seen, so they were willing to see me and test me. As I said, they found my thyroid stimulating hormone was high, meaning that I was hypothyroid. The very nice young doctor suggested a clinic I could go to and recommended I do so within the week.

A week turned out to be the soonest that I could get an appointment, so I set to work. I cut out all the goitrogens in my diet (which were many: broccoli, cabbage, kale, turnips, peanut butter, millet), restarted my multi-vitamins which I'd just stopped (they have 100% of the RDA for iodine) and started salting my food. By the time of my appointment, I felt vastly better. My TSH levels came back normal and they declared me cured and sent me along on my way.

Unfortunately, most of my weird symptoms continued, including the uncontrollable weight loss. So I thought back. I thought back to quitting fruit juice in July and substituting tap water. And doing all my cooking, including vast quantities of potatoes, rice and steamed vegetables, all with tap water. Through all the dietary changes, my symptoms had stayed the same and the only other thing that stayed constant was my high tap water use. Crazy people on the Internet (hereinafter CPOTI, present company most definitely excepted) indicated that many people who, like me, have Asperger's are highly sensitive to fluoride. So a month ago, I started buying reverse-osmosis purified water by the gallon, and quit using tap water for anything but washing. And saw a miracle cure. All my weird symptoms went away (except for the pins and needles, which still come and go, but they've certainly become much milder).

I have done other things to get the thyroid going, notably eating much, much more seafood. And I might note that a lot of my lifelong or near lifelong symptoms fit in with fluoride sensitivity, fluoride poisoning or skeletal fluorosis. The spectacular indolence, that other word that starts with 'I' but is usually abbreviated E.D. these days (see? I can be discreet), stiff neck and stiff back making it impossible for me to sit up more than a half hour at a time--all these fit in, and all seem to be getting better already. Puberty at 47 is an interesting experience; second puberty kicks butt all over second childhood anyway. (Well, sort of discreet.)

Current problems are a laugh by comparison to two months ago. Astonishing quantities of earwax and a touch of, uh, let's just say diaper rash. CPOTI suggest that both are associated with candidiasis, which medical science doesn't recognize as something that causes any problems. As the CPOTI have been good to me and as their prescription is cheap and delicious (eat yogurt), I'm inclined to cut them some slack. In general, I'm more inclined to listen to anybody, even the CPOTI, if their suggestions are cheap and easy, preferably delicious, and can't possibly hurt.

What do I bring all this up? A lot of us (me included) post that, "Whatever I eat, I'm still getting sick." (In my case, there are eleven exclamation marks after that sentence, but the rest of you are much cooler.) And what I want to suggest is that if this applies to you, that you think about what you drink, and what you cook with. Because in avoiding gluten, we tend to cook at home much much more than the average person does, and we tend to eat a lot of rice, potatoes and gluten-free pasta. I sense that I'm not the only one here cooking all this stuff using tap water. If you're in the US or Canada, your tap water is probably fluoridated. (Exceptions, if I recall correctly, are San Diego, Santa Cruz and Long Beach.) Though the CPOTI suggest that fluoridated water is the cause of all the world's ills, or at least thyroid problems, I'm perfectly happy with the idea that it's safe for drinking. However, even the sites in favor of fluoridation note that it's safe at the appropriate concentrations. Which suggests that cooking it down, say to make rice, might lead to one getting much more than the appropriate concentrations. (Others including the not particularly CPOTI Natural Resources Defense Council suggest that the greater danger is from fluoride toothpaste. I don't particularly have an opinion on this (though I did throw out mine in favor of Tom's of Maine to be on the safe side), but pass it along as it's certainly possible).

Regardless, you might want to try using purified water for drinking and cooking if you've ever felt low-energy, if you've ever had trouble losing weight, if you've ever had back or neck stiffness (ok, that's everybody, but still). Reverse osmosis filters for home use are said to run $200-300 and also apparently increase your water bill pretty markedly. (Activated charcoal filters are useless at removing fluoride.) So getting the bottled version (labeled Purified Water everywhere I've looked) at $1/gallon might be a better alternative. I get mine from Target because it tastes the best, but you can find it practically anywhere.

Also also, pets have thyroids, too, and a lower tolerance for fluoride, being smaller than us. Giving Amelia the cat, the fluffy assassin herself, purified water has practically rekittenized her. She flies around, she plays with shoelaces, she demands that I throw her her ball. So if you don't get the water for yourself, at least consider getting it for your pet or pets. They will thank you. Granted, they will thank you by keeping you up half the night, but it's a joyous kind of sleeplessness, isn't it?

Ahorsesoul Enthusiast

The Fluffy Assassin, Excellent information. I've been thinking of a water system for the last year. We use to live where we had our own well but now have moved to city water. I can smell the chemicals in the water. tfs

The Fluffy Assassin Enthusiast

I'm no expert-- not a doctor, nutritionist, dietitian or chemist. But I note that my thyroid as measured by the standard TSH test was normal when I was still pretty sick. Is that what you've had tested, or have you had the actual thyroid hormones (T2, T3, T4 as I recall) tested? Very few doctors test these; I've found one locally, but haven't gone to see her yet. If the pins and needles don't go away pretty soon, I'll be doing that directly.

My suggestion is to try purified water for a month or so and see if you feel any better.

Should one only suspect fluoride problems if one's thyroid is also shown to be not working well, or can it also wreak havoc and leave the thyroid okay? I have pretty major fatigue and neck pain still, but my thyroid has always been normal when checked (many, many times).
GFinDC Veteran

Interesting stuff Fluffy. I always use one of the charcoal filter pitchers. Didn't know it wasn't good for flouride though. I started using a filter pitcher years ago because of high lead levels in the city water supply. Then later they had high bacteria levels and red water. Then later they started having houses that were only 5 years old springing multiple pinhole leaks in their copper water pipes due to some chemical concoction they put in the water. They had people replacing all the copper pipes in their houses that were basically brand new. That was interesting. They debated for months about what chemical additive was causing the problem. I guess there were too many to make a good guess. All kind of funny since the EPA HQ is right here in DC. At least the city handed out filter pitchers for people at one point. The water isn't red anymore but they do flush the hydrants all summer to keep the bacteria count lower. That's neat your cat likes the bottled water. My Muffin gets charcoal filtered water here. Thanks for the info! Although really, it's so hard to believe there could be a problem with the water in an modern city don't you think? Kidding! :lol:


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The Fluffy Assassin Enthusiast

I haven't done. As this is the city's old mill town, it also occurs to me that there might be bad stuff in the water other than fluoride due to old crappy pipes. I want to get the water tested myself to make sure there's no heavy metals or anything else like that. I don't have any brilliant ideas how to do so, but if the pins and needles don't clear up soon (also a symptom of, for example, arsenic poisoning), I'll be getting on it (and as I note above, seeing a better doctor).

Out of curiosity, did you contact your local water district to get a report of the fluoride (and other chemicals) in your water?
Glamour Explorer

I went to filtered water about 3 years ago. Brita. Became diligent about it about a year ago. About 2 weeks ago bought a Seychelle filter pitcher. I cook with it, etc.

filters for bath and shower to remove chorine about 3 months ago.

Lisa Mentor
Open Original Shared Link
YoloGx Rookie

This is interesting. This is the second reference on water today I have run across. It amazes me if its true that the charcoal filters don't get the fluoride. I need to check this out. I would never drink water directly out of the tap. One thing that has helped stop pins and needles as well as general body and neck and back aches and pains has been regular use of olive leaf extract. But I guess that's another story. Meanwhile it sounds like a great idea to get your water checked--soon!

Bea

ravenwoodglass Mentor
I haven't done. As this is the city's old mill town, it also occurs to me that there might be bad stuff in the water other than fluoride due to old crappy pipes. I want to get the water tested myself to make sure there's no heavy metals or anything else like that. I don't have any brilliant ideas how to do so, but if the pins and needles don't clear up soon (also a symptom of, for example, arsenic poisoning), I'll be getting on it (and as I note above, seeing a better doctor).

If you call your local health dept you should be able to get info on who to call to test. I am glad you seem to be getting some relief. According to the link Lisa was nice enough to post your area has really low levels of floride (.81 with 4.0 being the max allowed, so I wonder if that is it or something else maybe in the water that you are sensitive to. Or it could be something else entirely. Maybe you are finally getting some good healing on the diet and that is why you are feeling better.

Have you been taking sublingual B12? That should be the first thing you do for the pins and needles. Are you now thinking your not celiac and it was the water all this time?

Jestgar Rising Star
Open Original Shared Link

That looks like what I get every year.

So your city doesn't add fluoride, and the naturally occurring levels are quite low.

YoloGx Rookie

The other thing that helps me against pins and needles feeling is to take co-enzyme B complex on an empty stomach every day. I get tablets from Country Life since I can't handle the common sublinguals with their sorbitol. I need it mainly for the B-1 since without it I have Beri Beri like symptoms (part of my Scandinavian heritage it seems). Check it out! Beri Beri degrades the nerves etc. as well as messes up the digestion (creates poor carbohydrate and protein absorption). In Sweden for instance it can go with celiac -- as it has with me.

Meanwhile you might have crappy old pipes whether or not your city does. We have several old houses on this lot that I manage. The piping is quite old--not the modern copper except where we have made repairs. But the old stuff in the ground is not good. Could be a similar thing for you.

You may well need to install a shower filter as well.

Certain building materials are another area to look out for too such as old press board in particular as well as modern stuff they put in sheetrock (after installed, cleaned up and painted its safe), plaster mixes, fix all etc.

Detox herbs again (my old rant) are a godsend (dandelion et al--not the tinctures due to gluten in the alcohol) ...even eating lots of fresh cilantro (look out for possible gluten in the pills!) and parsley as well as lots of fresh greens (blending them is a good idea so you get more supposing you can handle raw veggies) and even beets.

Plus, if you can get it, sauna and/or mud packs (french clay or food safe bentonite such as Indian Clay). Start with the hands and feet with the mudpacks so they don't wear you out. PUt in a little apple cider vinegar into the mix. Use paper towels or old towels to clean up.

And anyone can exercise...well almost anyone. Depends on how you feel. Start slow and work your way up.

Further, good fats are often needed such as coconut oil, olive oil and real (best organic) butter and even sunflower or safflower oil if you aren't getting them in your diet. I think its one reason I scarf down sunflower seeds. If you can handle them, eggs are great for strengthening the nerves. Taking extra Magnesium and other good minerals also may be essential.

Bea

Swimmr Contributor
I'm no expert-- not a doctor, nutritionist, dietitian or chemist. But I note that my thyroid as measured by the standard TSH test was normal when I was still pretty sick. Is that what you've had tested, or have you had the actual thyroid hormones (T2, T3, T4 as I recall) tested? Very few doctors test these; I've found one locally, but haven't gone to see her yet. If the pins and needles don't go away pretty soon, I'll be doing that directly.

My suggestion is to try purified water for a month or so and see if you feel any better.

I am going to get some water TODAY. I have seen something about water before, but really didn't take it that seriously. I think I will now. Also my pets only get spurts of energy. Even before my female and male cats were fixed...especially my male. He is just so cranky and so lethargic. Not lazy. He reminds me of Eeyore. He gets the most excited an hour before feeding.

Swimmr Contributor
The other thing that helps me against pins and needles feeling is to take co-enzyme B complex on an empty stomach every day. I get tablets from Country Life since I can't handle the common sublinguals with their sorbitol. I need it mainly for the B-1 since without it I have Beri Beri like symptoms (part of my Scandinavian heritage it seems). Check it out! Beri Beri degrades the nerves etc. as well as messes up the digestion (creates poor carbohydrate and protein absorption). In Sweden for instance it can go with celiac -- as it has with me.

Meanwhile you might have crappy old pipes whether or not your city does. We have several old houses on this lot that I manage. The piping is quite old--not the modern copper except where we have made repairs. But the old stuff in the ground is not good. Could be a similar thing for you.

You may well need to install a shower filter as well.

Certain building materials are another area to look out for too such as old press board in particular as well as modern stuff they put in sheetrock (after installed, cleaned up and painted its safe), plaster mixes, fix all etc.

Detox herbs again (my old rant) are a godsend (dandelion et al--not the tinctures due to gluten in the alcohol) ...even eating lots of fresh cilantro (look out for possible gluten in the pills!) and parsley as well as lots of fresh greens (blending them is a good idea so you get more supposing you can handle raw veggies) and even beets.

Plus, if you can get it, sauna and/or mud packs (french clay or food safe bentonite such as Indian Clay). Start with the hands and feet with the mudpacks so they don't wear you out. PUt in a little apple cider vinegar into the mix. Use paper towels or old towels to clean up.

And anyone can exercise...well almost anyone. Depends on how you feel. Start slow and work your way up.

Further, good fats are often needed such as coconut oil, olive oil and real (best organic) butter and even sunflower or safflower oil if you aren't getting them in your diet. I think its one reason I scarf down sunflower seeds. If you can handle them, eggs are great for strengthening the nerves. Taking extra Magnesium and other good minerals also may be essential.

Bea

I get overwhelmed when I read your posts :( They're crammed full of info, which is awesome. What does the sauna and/or mud packs do??

YoloGx Rookie
I get overwhelmed when I read your posts :( They're crammed full of info, which is awesome. What does the sauna and/or mud packs do??

Don't mean to overwhelm Swimmr! Honestly I have gone through most of the stuff I suggest and often still use it. I finally wrote a new outline for a book I mean to write on all this stuff--kind of a book for the sensitive celiac/gluten intolerant who has been through everything.

The saunas and the mud packs (one at a time, eh?) help remove toxins through the skin so they don't have to go through your probably already overloaded liver (and thus in effect your nervous system and brain and kidneys etc. since so many aspects are affected by toxins). Nevertheless its best to take it slow and don't over-do since it will likely tire you out--at least it has for me!

Bea

The Fluffy Assassin Enthusiast
That looks like what I get every year.

So your city doesn't add fluoride, and the naturally occurring levels are quite low.

City does add fluoride Open Original Shared Link

Sodium Fluorosilicate, just like Mom used to make. If I'm sensitive to fluoride, as I suspect, any would be a problem. If it's lead or arsenic or something, as I fear, well, we have a load of other problems in my neighborhood or at least at my address.

The Fluffy Assassin Enthusiast
If you call your local health dept you should be able to get info on who to call to test. I am glad you seem to be getting some relief. According to the link Lisa was nice enough to post your area has really low levels of floride (.81 with 4.0 being the max allowed, so I wonder if that is it or something else maybe in the water that you are sensitive to. Or it could be something else entirely. Maybe you are finally getting some good healing on the diet and that is why you are feeling better.

Have you been taking sublingual B12? That should be the first thing you do for the pins and needles. Are you now thinking your not celiac and it was the water all this time?

For the 10 or 20 years before I quit gluten, I had wandering paresthesia (pins & needles), which went away after gluten freedom. This is different, confined to the hands and feet, and only starting in July. The other thing I did in July but which I didn't mention in the long post (except in my sig line) was the great increase in vegetable consumption. As nearly all these vegetables are imported from Latin America, it's possible there's a problem with the water or fertilizer or whatever there. I'm gradually shifting to organic, another thing that's recommended for Asperger's people like me. Maybe that'll help with the pins and needles. The other weird symptoms, I'm convinced, were due to bad water, though whether it was the fluoride or something else I can't say with confidence.

YoloGx Rookie
For the 10 or 20 years before I quit gluten, I had wandering paresthesia (pins & needles), which went away after gluten freedom. This is different, confined to the hands and feet, and only starting in July. The other thing I did in July but which I didn't mention in the long post (except in my sig line) was the great increase in vegetable consumption. As nearly all these vegetables are imported from Latin America, it's possible there's a problem with the water or fertilizer or whatever there. I'm gradually shifting to organic, another thing that's recommended for Asperger's people like me. Maybe that'll help with the pins and needles. The other weird symptoms, I'm convinced, were due to bad water, though whether it was the fluoride or something else I can't say with confidence.

Hey--did you ever try taking olive leaf on a regular basis? It actually kills off fungi as well as viruses, bacteria and parasites without harming us. Really a wonder. If you decide to take it, however, do it slowly. At first you are likely to get a Herxheimer effect otherwise.

Bea

The Fluffy Assassin Enthusiast
Hey--did you ever try taking olive leaf on a regular basis? It actually kills off fungi as well as viruses, bacteria and parasites without harming us. Really a wonder. If you decide to take it, however, do it slowly. At first you are likely to get a Herxheimer effect otherwise.

Bea

Thanks for the suggestion. I'm doing so much better on what I call prison food (cup of protein, cup of starch, two cups of vegetables) that I'll probably stick with that for a while. Also have started exercising again (one of your earlier suggestions) to my great joy. I had quit when I couldn't stop losing weight; I seem to have stabilized now (knock on wood).

AKcollegestudent Apprentice
That looks like what I get every year.

So your city doesn't add fluoride, and the naturally occurring levels are quite low.

See, the way I read that is a) in the sidebar they say that they do add it at the treatment plant and B) if their goal is 4 ppm, then they're adding a lot of fluoride to bring those levels up. I'm actually slightly terrified of these numbers right now and am now interested in the differences between where I grew up and where I go to college.

...And apparently, I don't get fluoride in the water at school or at home. Cool.

YoloGx Rookie
Thanks for the suggestion. I'm doing so much better on what I call prison food (cup of protein, cup of starch, two cups of vegetables) that I'll probably stick with that for a while. Also have started exercising again (one of your earlier suggestions) to my great joy. I had quit when I couldn't stop losing weight; I seem to have stabilized now (knock on wood).

Glad to hear you are doing so much better! It really is so nice to be able to exercise! Something one really appreciates when you have gone through a period of time when you can't. Stirs up the mitochondria and all that and makes you feel young again!

I suggested the olive leaf due to you mentioning the aspergillus--which I have heard is very hard to kill using standard methods.

Am fighting something off myself--haven't been quite right ever since I took that damnable clindamycin for a week for an ear infection after which I had a delayed reaction and developed a type of projectile mucous colitis for a couple of weeks. Thank god its helping to use the olive leaf as well as large doses of the the enterically coated acidophilus as well as take the marshmallow root plus the detox herbs. I am going on walks but have yet to achieve using my malibu pilates chair again. Can tell I will very soon however. Am thinking of doing yoga tonight. Meanwhile I seem to be more sensitive than usual to various foods I think because of the devastation to my intestines due to the antibiotics. The AMA approach would be to take even more antibiotics! Arrgh!

Bea

JamieSims Newbie

Right now I'm astounded and swearing my head off (but not on this forum). I couldn't figure out why on earth my gluten intolerance issues were lessening but my RA and and glands (or thryroids) were going bonkers. Sometimes, more like rarely, I do get pins and needles. :huh:

More so tho, my elbows and hands start to ache, then progresses to my thyroid, and then I'm on that awful 'dirty drug high' as I call it and I am in pain. Even if flouride isn't the cause I am definitely going to try purifying my water and hope that alleviates the symptoms. Even that would be good.

Considering I just had a real bad attack this week, Fluffy Assassin your timing is very good. With any luck I can avoid another. And my cats thank you too. :rolleyes:

The Fluffy Assassin Enthusiast
See, the way I read that is a) in the sidebar they say that they do add it at the treatment plant and B) if their goal is 4 ppm, then they're adding a lot of fluoride to bring those levels up. I'm actually slightly terrified of these numbers right now and am now interested in the differences between where I grew up and where I go to college.

...And apparently, I don't get fluoride in the water at school or at home. Cool.

4 ppm is the maximum level permissible. I think most systems aim for something less than half of that. Yes, it's all very confusing. Here's where you find whether or not your system's fluoridated: Open Original Shared Link Apologies if you've already seen this.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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