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You May Already Know About The Mercury In Fillings...
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A lot of the symptoms you posted can also be experienced by those frequently smoking a controlled substance. If this is one of your habits, you might want to consider that.

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hello everyone. i just talked to this guy named Leo at the Dental Amalgam Mercury Syndrome (DAMS) hotline thingy, and well i basically read bout everything he told me. but he told me about some lady who had her amalgams removed wrongly and got the symptoms of MS!! wtf! so im a little less hurried about this, man i can't believe it. for once, this is one thing that is actually making sense to me. i just got to make sure they follow the right procedures.

ok rachel hasn't responded in days i would like to have someone give me their experience. also how would i get my insurance to help cover it?

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man im really sad my family doesn't believe me. they keep pointing out all these official articles, and im too tired to argue.

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I am glad to know you are continuing to investigate. :) I think it would be great if you could get your Mom on side with your diet, if she has health issues she may see a real improvement.

As for the tongue, no white is not healthy and normal, white indicates candida as I understand it. A healthy person's tongue is pink and clean looking, no white stuff.

Lots of us have felt crazy and alone and beyond sad too, I remember at nineteen having a passport photo taken and the photographer asked me to smile, I couldn't smile, I couldn't think of one thing I had to smile about. I don't think I smiled at all that year.

I've also felt a kind of crazy rage where I wanted to crawl out of my body, the sensation was like something was scraping the inside of my skin and it made me feel insane. That's all gone now, I haven't had that stuff since I stopped consuming any MSG.

I am on the SCD and last night I had pizza for supper, a super easy crust:

1 1/3 cup almond flour

1/3 cup dry curd cottage cheese

1/2 tsp salt

1/2 tsp dried rosemary (not the powder)

1/2 tsp dried oregano

1/2 tsp dried thyme

1 Tablespoon olive oil

1 large egg

Put all ingredients in a food processor, combine well, divide into two and put on baking trays with parchment paper on them, using a piece of plastic wrap pat down the batter so that you have two round flat circles about 8 - 9 inches across. I leave the edge a little higher so that it helps to hold the toppings on.

Toppings, what do you like? Last night I fried some onions for long time and put them, cheese. tomatoes and olives on top, and then baked it at 325 degrees F for 25 minutes.

As so many other have stressed, diet, diet, diet makes an enormous difference and until you commit to doing just one for some period of time you won't be able to see if it is making a difference.

As to what others are doing or thinking you will find you have to decide for yourself what is true for you and what is not, I see many people who are unwilling to rethink their diets though they are ill, they seem to be completely convinced that they are some kind of miracle machines who can put anything they are told is fuel into them and they will just keep going forever and that whatever is not working can be fixed with some kind of pill.

Did you say you were on Ritalin at one point? As I understand it that drug alone may cause problems.

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yeah that's what i expected, especially when i go to one of my "specialty doctors" i have in the past 6 months.

its like saying "i have a headache what is the problem?" and your bombarded with explanations. i don't know. but again if you want, i can tell you guys the many doctors ive been to! id be glad to really, maybe because im thought of as a hypochondriac by most .

Boy does that list you gave hit home. Imagine feeling like that for more than 15 years with explosive constant daily D, balance issues and migraines thrown into the mix. Add those and you have most of my adult life. I understand that you feel like you are thought of as a hypochondriac. I certainly have been there as have many on this board.

I do hope you are still on the gluten-free diet, doing it full force and that you will give it at least a couple of months to help. I am not saying that you don't have other issues mixed in, you may. But you also may not. I didn't have this board when I was first diagnosed and I was simply happy to have the daily and nightly painful bouts of D stop. I laughed under my breath when the elderly doctor who finally diagnosed me told me that I might see a lot of my other issues go away also. I was crying for joy six months later when I ran up my stairs without even thinking about it. It had been years since I could even walk up them without using my arms to haul myself up and I had needed walls or canes to walk without falling over. Then the degenerative process in my joints stopped and I could use my hands again, my vision cleared up and I stopped seeing 'auras' and sparkly lights all the time. I became more calm and rarely angered and the only time I became depressed or had obsessive thought patterns was when glutened. For me my diagnosis seemed like a miracle. But it took time. I still hope that while you investigate other issues furthur that you will keep to the diet.

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I am glad to know you are continuing to investigate. :) I think it would be great if you could get your Mom on side with your diet, if she has health issues she may see a real improvement.

As for the tongue, no white is not healthy and normal, white indicates candida as I understand it. A healthy person's tongue is pink and clean looking, no white stuff.

Lots of us have felt crazy and alone and beyond sad too, I remember at nineteen having a passport photo taken and the photographer asked me to smile, I couldn't smile, I couldn't think of one thing I had to smile about. I don't think I smiled at all that year.

I've also felt a kind of crazy rage where I wanted to crawl out of my body, the sensation was like something was scraping the inside of my skin and it made me feel insane. That's all gone now, I haven't had that stuff since I stopped consuming any MSG.

I am on the SCD and last night I had pizza for supper, a super easy crust:

1 1/3 cup almond flour

1/3 cup dry curd cottage cheese

1/2 tsp salt

1/2 tsp dried rosemary (not the powder)

1/2 tsp dried oregano

1/2 tsp dried thyme

1 Tablespoon olive oil

1 large egg

Put all ingredients in a food processor, combine well, divide into two and put on baking trays with parchment paper on them, using a piece of plastic wrap pat down the batter so that you have two round flat circles about 8 - 9 inches across. I leave the edge a little higher so that it helps to hold the toppings on.

Toppings, what do you like? Last night I fried some onions for long time and put them, cheese. tomatoes and olives on top, and then baked it at 325 degrees F for 25 minutes.

As so many other have stressed, diet, diet, diet makes an enormous difference and until you commit to doing just one for some period of time you won't be able to see if it is making a difference.

As to what others are doing or thinking you will find you have to decide for yourself what is true for you and what is not, I see many people who are unwilling to rethink their diets though they are ill, they seem to be completely convinced that they are some kind of miracle machines who can put anything they are told is fuel into them and they will just keep going forever and that whatever is not working can be fixed with some kind of pill.

Did you say you were on Ritalin at one point? As I understand it that drug alone may cause problems.

Hi Dylan,

If you are interested in the SCD diet, you can find more information here:

http://www.celiac.com/gluten-free/index.ph...c=44279&hl=

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Hi, the recipe I gave would fit the gluten-free diet and that is what I would suggest you do first, just follow the gluten free diet, for many people that works and it has more variety than the SCD. I love the SCD but I only chose it after two years of following a strict gluten free diet and still suffering.

What are you eating?

Thanks for posting the link Lisa.

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one of the reasons ive been so impatient, well i just haven't taken ritalin. in years, but i did today and i feel less anxious. so i can take time to think it over. i did, and i still believe, not only scientifically but in my gut, i must be sensitive to mercury. first off, isn't everyone? it's poisonous.

Yes, mercury IS poisonous to ingest, for everyone. But please know that my mental and physical health has seen a pretty complete reversal withe the gluten-free diet (along with a huge diminishment in processed foods) and.....I have a mouth FULL of mercury fillings. Actually have had some removed in teh last few years by the fully conventional and "unsafe" method and didn't notice anything untoward in mental or physical health. So - while some people are extremely sensitive to this, others are not and, I wouldn't jump to the immediate conclusion that this is the root of your problems.....it could be, but may not be.

Diet is a HUGE factor in mental health for many people. Not all - - I watch my boss and what he eats and am astounded - it's not the best diet and he is a preternaturally upbeat and energetic and happy person. Makes me furious :lol:

I haven't, I don't intend to. I think that a lot of the things they listed are vague. They could pertain to anything, or nothing. That particular site seems a bit like a scare blog. I pretty much skip sites that expect you to believe what they're telling you, without offering any proof.

Yes, most sites and info of a holistic nature, IMO, seem to be SCARE blogs and with little scientific proof, and this is unfortunate as there is validity in many holistic treatments. and it seems universal that different sites addressing different conditions list nearly the exact same list of symptoms.....very curious.

Perhaps it might benefit mr. moore better to have the option of the full board membership, in the quest to answer some of his health concerns, rather than by a one on one Personal Message.

Outstanding point.

One more note to Mr. Moore: I have been on the gluten-free diet for three years now. the first year involved extraordinary ups and downs but stabilization finally - mostly - came. You simply HAVE to get yourself stabilized on a really healthy gluten-free diet for several months, eating mainly whole/unprocessed foods, if possible. It takes a while to reverse conditions in the body and mind brought on by the poisons of the western diet.

You ALSO must realize that there will STILL be vagaries and inconsistencies in your mental health even while maintaining a perfect diet, though these should be fewer and much milder, and the important thing to realize about these small pitfalls is that you must patiently WAIT for the dark clouds to pass, and don't micro-scrutinize every passing emotion. Life happens. Things happen. For women - hormones happen. Grief happens - I went through a terrible heartache this past summer and was beyond astonished to know that I could become that deeply depressed again, but I did and was absolutely flattened for a time. Things got so bad that I resumed taking an antidepressant again, at the urging of friends and loves ones. Months later, I take it just every other day, and hopefully will not take it at all at a future time. But if I need to, I"ll take it forever.

IF after many months on a strict and healthy gluten-free diet you STILL feel like a mad person, then other things must be considered. Other food intolerances, for example. As mentioned above I resumed my Lexapro and this turned things around for me after being demolished by grief in June; BTW I was more than twice your age at the time of dx and my neuropathways and brain had much more opportunity to be screwed up.

Exercise helps mental health and the release of endorphins. Too bad I hate it so :lol: as I must get back to it.

YOU CAN DO THIS!!!!!!!!!!!

:)

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man im really sad my family doesn't believe me. they keep pointing out all these official articles, and im too tired to argue.

It is sad. People are stubborn and don't want to think outside the box. But...when they see your health change, something will "click" with them. You may not have them on your side now but you have all of us on your side. We understand esp. the ones that have gone thru the similar things you have gone thru. It takes time and patience. We live in a fast pace world and nobody wants to wait. If you are sick its even harder to wait.

As for your family, if they won't listen, do what is best for you and hopefully they will soon follow. Lead by example rather than words. You have enough to deal with for yourself right now. Worrying about their health just puts more stress on you and that's not good.

Please be patient, keep researching, eat right and find a good doc...the same things I and others keep saying.

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last night i found something that cemented my belief in the mercury poisoning:

http://www.truehealth.org/mercurysymptoms.html

there was another word i forgot which, that said those with it become extremely withdrawn and anxious. which is something that i DEFINITELY noticed in 7th grade, which is when A) i got my tonsils out and B) and i got another fillings. it was so weird because in 6th grade i was pretty outgoing and perceptive, then 7th grade came and all of a sudden i started being afraid of what people thought of me to like a crazy degree. like i'd hide behind tall people, even though was tall and avoid eye contact or standing up in class. it was SO WEIRD.

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there was another word i forgot which, that said those with it become extremely withdrawn and anxious. which is something that i DEFINITELY noticed in 7th grade, which is when A) i got my tonsils out and B) and i got another fillings. it was so weird because in 6th grade i was pretty outgoing and perceptive, then 7th grade came and all of a sudden i started being afraid of what people thought of me to like a crazy degree. like i'd hide behind tall people, even though was tall and avoid eye contact or standing up in class. it was SO WEIRD.

I was in excellent health at that age... the best physical health of my life. IMO, 7th grade just SUCKS. Most people are going through puberty. Hormonal imbalances can make people pretty crazy and mean :angry: I went to school for 22 years and I have to say that 7th grade was definitely the worst. Ugh. I would NOT like to go through that again.

It's natural to reflect back on your life when you're having a hard time... just remember that not everything is a sign of a serious problem :lol:

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I think it is important to remember that there are some things we can have control of; some things it will take time for us to have control of and somethings we may never get control of.

Diet is a strategy that allows you to have some immediate control of what is affecting you and even if mercury is a major problem the diet will help you to begin detoxing.

If you can develop a focus that you can stay with it will help others to see your commitment to changing your life. Who can argue against a healthy diet?

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One more note to Mr. Moore: I have been on the gluten-free diet for three years now. the first year involved extraordinary ups and downs but stabilization finally - mostly - came. You simply HAVE to get yourself stabilized on a really healthy gluten-free diet for several months, eating mainly whole/unprocessed foods, if possible. It takes a while to reverse conditions in the body and mind brought on by the poisons of the western diet.

In our culture of expecting instant gratification, it's easy to think that if you try the diet for a meal or two, things should get better. But it took you 19 years to get into this mess and there is no Star Trek magic to just beam you out of it. It's gonna take time - that's just how it is.

There are plenty of official web sites and articles that you can show your mom and other family members if you think that would bring them around to your side.

http://psy.psychiatryonline.org/cgi/conten...stract/45/4/325

http://www.medicalnewstoday.com/articles/53741.php

http://www.jhsph.edu/publichealthnews/pres...izophrenia.html

http://www.ncbi.nlm.nih.gov/pubmed/12298186

http://www.ncbi.nlm.nih.gov/pubmed/1577401...ogdbfrom=pubmed

Gluten intolerance my very well not be your ultimate issue and may not be causing all of your problems. Some board members where were definitely gluten intolerant when they came here discovered that when their other issues were resolved they could resume eating gluten as well as other foods they once could not tolerate.

I forget - have you had the celiac blood test?

  • Antigliadin antibodies (AGA) both IrA and IgG

    Antiendomysial antibodies (EMA) - IgA

    Anti-tissue transglutaminase antibodies (tTG) - IgA

    Total IgA level.

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thanks everyone for supporting me. now i have some questions:

how accuarate, if at all, would a hair or blood sample be for determining CHRONIC mercury toxicity?

ive heard about candida overgrowth but i thought only women got it, like you know, yeast infections. so that's what the whiteness is on my tounge? weird! but like i said knowledge is power. and i realize you can know TOO much. which is why im trying to distract myself so i can rationalize things.

ok so is it safe to say that, despite what mainstream denstists say, mercury is bad coming from your teeth? i noticed that a lot of "national" or "american" associations say it's not, but like germany and sweden and others have it banned. im wondering if i was born elsewhere i wouldn't be weird? like one thing i always do is im always stretching my legs because they always feel very tight, and it becomes a ritual so 'll go hide and stretch. same with pushups my chest skin starts to feel weak and rubbery.

well im gonna keep trying the diet. it actually DID help a bit i noticed i wasn't so moody, but my vision is still blurred and murky, and just weird.

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last night i found something that cemented my belief in the mercury poisoning:

http://www.truehealth.org/mercurysymptoms.html

there was another word i forgot which, that said those with it become extremely withdrawn and anxious. which is something that i DEFINITELY noticed in 7th grade, which is when A) i got my tonsils out and B) and i got another fillings. it was so weird because in 6th grade i was pretty outgoing and perceptive, then 7th grade came and all of a sudden i started being afraid of what people thought of me to like a crazy degree. like i'd hide behind tall people, even though was tall and avoid eye contact or standing up in class. it was SO WEIRD.

It is likely that the celiac was triggered by the surgery and your getting fillings at the same time may actually be of little consequence.

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the candida overgrowth could of been triggered too, right?

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Candida overgrowth may be related to antibiotics, have you been on them very often?

Please don't take my opinion that your white tongue is candida as the absolute truth, I am no doctor and perhaps there are other causes that I don't know about but as I said a healthy tongue is pink and clean looking.

Have you looked at the side effects to Ritalin?

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I imagine you had your tonsils out because they kept getting inflamed?

The thing is, the tonsils are a window to the health of the body. Inflamed tonsils are telling you that your body is toxic. Chronically inflamed tonsils are telling you that your body is VERY toxic. Having them removed may stop the inflammation but it does not cure the reason why you are getting the inflammation in the first place. In fact, without the tonsils the body now has one less avenue through which it can expel the toxins.

It's a bit like going to the doc because you keep getting headaches and him saying, "well we don't know why you keep getting the headaches, but we can stop them if we cut your head off"!!! :huh:

You may have issues with mercury, but I suspect that your issues are far more likely to have their roots in your diet.

Whilst some people can cope relatively well with rubbish food, others can't. Junk food will affect most people eventually but with some it manifests earlier than others. You quite obviously have had issues with gluten, sugar, probably dairy and a host of other foods for a long time and it is your diet that has given you these problems. Not everyone gets gut issues - with some it just affects the brain and nerves.

There are people out there with mercury fillings who do not have a problem with them. For those people, the mercury will still escape into their bodies, but they very likely have very strong and supportive gut flora and therefore strong detox pathways.

Those of us exposed to things like antibiotics and other drugs, even basic painkillers, , aspirin, codeine, Calpol, etc., at a fairly young age and whose parents also have health issues that suggest they also have poor gut flora, have not inherited a strong immune system from them, and have had what little we did have further decimated by any amount of chemically-derived drugs and food additives.

Funny isn't it how people like to keep their homes, or their cars clean and yet they fill their bodies with absolute junk then can't figure out why they got sick! Ok so maybe you don't think that your diet over the years has necessarily been junk, but perhaps it has been junk to YOUR body.

If you want a clean body you have to eat clean food - I don't mean just washed, I mean pure, unadulterated, unprocessed, un-mucked-about-with, natural, fresh, organic, life sustaining, vital, health-giving food.

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last night i found something that cemented my belief in the mercury poisoning:

http://www.truehealth.org/mercurysymptoms.html

there was another word i forgot which, that said those with it become extremely withdrawn and anxious. which is something that i DEFINITELY noticed in 7th grade, which is when A) i got my tonsils out and B) and i got another fillings. it was so weird because in 6th grade i was pretty outgoing and perceptive, then 7th grade came and all of a sudden i started being afraid of what people thought of me to like a crazy degree. like i'd hide behind tall people, even though was tall and avoid eye contact or standing up in class. it was SO WEIRD.

You might want to consider that the onset of puberty in guys is on average 12.5 years which would have been right around the time of your transition between grades 6 and 7. The onset of puberty and all of the crazy changing hormones during that time can trigger a whole bunch of things. Depression, anxiety, celiac disease, or whatever condition you may have might have been triggered by the onset of puberty. Not a rare occurrence.

And with suddenly feeling self-conscious and socially anxious at that time when you weren't before, that's probably because around age 12 you (like everyone else) developed the cognitive ability to put yourself in someone else's shoes and understand that they might be judging and evaluating you. I'm not downplaying how difficult this has been/is for you but just know that it was totally normal for this self-consciousness to develop at that time. It sounds like this experience may have been more severe for you than others, which could probably be due to a variety of reasons.

Anyway, I hope you can figure things out. And I certainly hope that you can get the support of you family or someone significant in your life. I know it can be tempting and promising to look for and hope for a magic bullet causing your distress but like many have said most issues are multifactoral. Depression involves really feeling helpless (from my point of view anyway) so it can feel good to have one extrinsic factor to which you can ascribe your distress and feel in control of. Be careful not to pin everything on one cause because if you change that and still feel distressed, you're only going to feel more helpless. Whatever you choose to do, please base it on advice from a professional/expert, not on advice from some unknown person like me!

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Candida overgrowth may be related to antibiotics, have you been on them very often?

Please don't take my opinion that your white tongue is candida as the absolute truth, I am no doctor and perhaps there are other causes that I don't know about but as I said a healthy tongue is pink and clean looking.

Have you looked at the side effects to Ritalin?

yeah its mostly anxiety and stuff. the reason i started anxiety pills is because i felt i had no control over my mind or body, my body because my vision is getting slowly worse, despite the eye doctor saying my pupils are fine, no cataracts or whatever. and my hearing actually does has a ringing which drives me CRAZY sometimes if i don't have headphones on.

i think you guys are on to something, when i got my tonsils out SOMETTHING triggered SOMETHING. but im not gonna play dr. house anymore. i just got the good news my insurance WILL cover my filling replacement!!! :lol:

but ill have to pay copays, oh well. after looking at the copays ive payed for the countless doctors ive been too im convinced this is the source of my problems, and it probably always has been, it just took me till now to realize it.

one thing that pissed me off is that one of the nurses was like trying to downplay the imporance of getting them replaced and was worried about my wisdom teeth. i was too nervous from the ritalin to talk, but basically if i have to ill pay out of the pocked for the fillings, and the insurance can cover the stupid wisdom teeth. i mean, my body is techinically in danger.

but what do i do till then?!

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Alex:

i know for sure since other guys were like that it was common, i made a lot of my quiet friends back then. but this stood out:

erethism: Erethism or erethism mercurialis is a symptom complex of mercury poisoning, presenting with excessive shyness, timidity and social phobia[1][2].

i experienced this after my tonsils were taken out in 7th grade after xmas, but it really showed its head in 8th grade. there is NO psychological explanation because, as a kid and adolescent or whatever i LOVED attention, but i wasn't obsessed with it, or paranoid about it and was not considered a shy child. EVER. i was the most talkative, even hyper verbal kid.

god i just can't believe they put this poop in your mouth and say "oh yeah, it's stable! even though there is extremely dangerous poison in it because you just so happen to be poor, we're gonna LOVE watching you slowly mentally regress!"

but, of course, i DONT know yet. your all right. there is not magic bullet. but what if everything else fails?

anyways what should i do till then? i feel very imperfect around people.

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erethism: Erethism or erethism mercurialis is a symptom complex of mercury poisoning, presenting with excessive shyness, timidity and social phobia[1][2].

this is a manifestation/result of sooooooooooooo very many things.

and Alex is right - - I was goign to mention that the onset of puberty can wreak terrible havoc in teens - at the age of 13, I became deeply and consistently suicidally depressed, at the onset of menstruation. Cried every single day. Was terrified of people. Lots of similar angst. No new fillings at that time.

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this is a manifestation/result of sooooooooooooo very many things.

and Alex is right - - I was goign to mention that the onset of puberty can wreak terrible havoc in teens - at the age of 13, I became deeply and consistently suicidally depressed, at the onset of menstruation. Cried every single day. Was terrified of people. Lots of similar angst. No new fillings at that time.

im sorry but that's wrong and i just said when and how it started. itis caused by MERCURY POISONING and ONLY mercury poisoning. unless i had poisonous hormones that were released when i got hair down there. but that wouldn't make sense would it? honestly you think i haven't thought of it? as soon as i talk to someone a million different equations pop up, andfinding whats wrong with me is a big equation. maybe someday i'll share my story with people.

i really want to stop being with people. is there a place kids can go and just feel safe and alone?

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Erethism may only be from mercury poisoning, but 'excessive shyness, timidity and social phobia' could be a symptom of many things. I could find many of my personality/behavioral traits under autism. My physical symptoms can be found under lupus, lyme disease, MS..........the list goes on.

I think everyone is concerned that if you have all your fillings replaced and you don't get better....what then? By all means, if this is something you feel is right for you, then go for it. But don't put all your faith into this one possible solution, because that's all it is.....a possibility. I sense that you want a fast solution to all your problems, one that won't take too much effort. I know you have been struggling for a long time and you want it fixed NOW, but sometimes what seems to be the easiest solution is not the solution at all.

You seem resistant to changing your diet for an extended amount of time. I'm not saying you are wrong or that others are right, but simply be open to all possibilities. You once said you noticed a difference when you changed your diet.....and that was only for a brief time. You have tuned out what is staring you in the face. Imagine what other changes would occur if you continued! You asked what you could do until you see the dentist.......that is my recommendation. Sure it takes work, and sometimes the progress is slow, but you are worth it.

Like my sig says....."The greater the obstacle, the more glory in overcoming it"

......and it is usually a long road to total recovery, as most of us have learned. But we glory in each step we take, no matter how big or small, towards better health and well-being. We are the voices of experience. And while we don't have all the answers, we have all been where you are......in our own ways......whether it's fighting to regain control of our minds, or our bodies.......we have all had our struggles.

You are on a journey. And maybe for you the dentist is you first step. But I doubt it will be the last. All of your issues have built up over time, and it will take time to tear them down. Be patient and keep a positive attitude........and NEVER give up! :P

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    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
    • I sit in an ice bath after a long training (running or riding).  It speeds my recovery, I swear!  
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