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Omg...i Might Be On To Something


Rachel--24

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Rachel--24 Collaborator

Jin,

Another thing I've been meaning to mention. A few months ago my best friend had her period and it didnt go away...she just kept bleeding. She went to the Dr. and the first thing they said was that the most common cause for that are polyps and they scheduled an ultrasound to see what was going on.

Sure enough...she had a polyp. They said she needed surgery to have it removed. It took her a couple months to get around to the surgery and her cycle was all a mess during that time...she was just bleeding off and on the whole time.

She had her surgery a couple weeks ago and they found like 5 or 6 more polyps and removed them all. The polyps were the cause of the persistent bleeding.

Have they ever checked you for this??


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Rachel--24 Collaborator
He can stick his head in the sand if he wants, but that very well could be why my grandmother has Alzheimer's now, and how he may end up with it!

Mercury is very strongly linked with Alzheimers. I think all neurotoxins can play a role in the destruction of brain cells...but certainly mercury is the at the top of the list.

The effects of neurotoxins are cummulative. Suppose a person has amalgam....gum chewing significantly increases the rate of mercury vapors released from the fillings...this is pretty well known if you've ever looked into mercury/amalgams.

Most gum nowadays contains aspartame....so in chewing gum...you are not only absorbing greater amounts of mercury vapor...but also you are bringing in another neurotoxin (aspartame) at the same time!

Not to mention other things we consume daily like flouride, MSG, pesticides, preservatives, food dyes, etc....all very toxic to the body and all contributing to the toxic burden which may have started from exposure to mercury from amalgams.

The WORST time I ever had during my illness was when I still had my fillings and crowns and was chewing gum everyday. I was chewing ALOT of gum because at the time I had quit smoking and needed something in my mouth. I was already poisoned but my symptoms during that time became SEVERE and SCARY.

I did make the connection after looking at the ingredients on the gum. I didnt know what aspartame was so I looked it up online....after I did some reading I never picked up another stick of gum. That was in 2003 and I havent chewed gum since.

Rachel--24 Collaborator

So here's two videos about amalgam fillings...

I've posted them before but I'm posting again for anyone new.

This first one is the one that I saw at the dentist office a few years ago...the video is what really made me realize how serious all this really is. Its called "The Smoking Tooth"

This one is also very informative and eye-opening.

"Quecksilber The Strange Story of Dental Amalgam"

miamia Rookie
Miamia, that was funny about the smoked salmon. ;) What else do you like to eat?

Today I made "pork and beans" with organic ground pork, onions, garlic and black beans and on the side steamed chard with lime juice on it. I was feeling so 'carla' about my diet today, not a rinne bar in sight :lol: and then chocolate jumped out of the fridge and into my hands without my even noticing. :ph34r::lol:

There are days when I think Candida runs the show and I'm just along for the ride. :lol:

Rinne-

My tastes have changed since being sick but over all there about the same. I don't have much of a sweet tooth the only sweet I really love is ice cream, or frozen yogurt- (possibly rinne bars?) . I love smoked salmon!! I actually love mos things smoked. A few things I eat now I love toast with smoked salmon , butter(now butter substitute) thinly sliced cucumbers and red onion. I make a thin crust pizza with hommade sauce some ground lamb caramamlized red onions and sauteed spinach. I am a dork and love spinach . I make a few pasta dishes usuallly with olive oil fish and vegees. I ahve this good reipe for a creamy pasta dish with smoked salmon. I use tofutti creamcheese with it I kow it sounds weird but its really good!!! Tofutti cream cheese has soy which I try to avoid but as long as I carla it and don't rachel it I can have alittle of it. I make alot of these paste/ spreads with seeds( pumpkin or sunflower) ground up with olive oil and vegees and put them on corn tortillas.

miamia Rookie

Donna-

the site for the absorbaid is www.naturessources.com

dlp252 Apprentice

Well apparently I am destined to NOT sleep. <_< (that was as close to a sleep smilie as I could get, lol). I could NOT get to sleep. The last time I looked at the clock it was 11-something, so I know it was after midnight when I finally dozed off. Then, as is my usual pattern, I kept waking up every hour. Finally, at 4 I just decided there was no use. :P I got up around 5:15 and ate. :lol:

I got my report from my ART session. They found lots of bacteria and fungal stuff: Borrelia, Babesia, Ehrlichia, Bartonella, HSV1, H Pylori, Listeria monocytogenes, plus some non specific stuff on 4 other bacterial/fungal CDs.

If anyone wants more detailed info about WHAT he or any of my other practitioners suggests/suggested to take for any of this you can PM me.

More in my reply to Rachel below...

Donna, I had totally forgot about ART today!!

I was surprised when I read this....sheeesh....hope I dont forget my own next weekend!

It seems like from both of your ART sessions Lyme is showing up as your main issue?? Did he test metals at all?

I hope nothing else shows up for me next weekend...I dont need any additional co-infections or anything else.

I cant take any EFA's either....I havent even tried in a couple years. I used to take a fish oil EFA and it kept messing me up so I tossed it. I've since read that yeah....fish oils can contain mercury...another thing I totally overlooked.

I just avoid anything having to do with fish now. I was curious if your EFA contained fish oil.

Don't worry, we won't let you forget! :P Yes, Lyme is apparently my main issue...seems weird to me, but he found it so clearly both times. And, both times the organ most affected is my thyoid...even stranger. :huh: So, this may be why I have so many thyroid symptoms, but it never shows up on thyroid testing...there's nothing actually WRONG with the thyroid, but it's being surpressed or affected somehow by the lyme.

He DID test metals and that was showing up big time as well. I had sort of dropped down the amount of stuff I was taking for that by stopping the chlorella and lowering the amount of pectasol I was taking, but he really thinks I need to continue both of those. Fortunately ALL my doctors think the same way. :P BUT, I am starting the chlorella at a lower dose...today I only took 1/2 teaspoon instead of the full teaspoon that Anna said to take.

The differences this time were the types of bacteria...last time he didn't find so many, and they weren't specific. Also my supplements tested differently...he found 4 that are either blocking me or are just not adding anything...that's great...hate taking stuff. :P I DO suspect that things will be at least little different for both of us each time because we are beginning to treat...albeit slowly....the different stuff.

The EFAs do not contain mercury...I bought them directly from Dr. S who assured me they did not have mercury...I stare at the shelf in Whole Foods and I am just overwhelmed, so these seemed like the best choice. I HAVE tried others in the past and have not done well on them for one reason or another.

I like anythin better in a powder it takes out the issue of reacting to something in the capsule or covering plus I have grown to hate swallowing pills

I hate swallowing them too....that was the MAIN reason why I started taking everything out of the capsule, but then gelatin started showing up on BioSET, so I figured it might be important to not swallow so many gelatin capsules, lol.

There are days when I think Candida runs the show and I'm just along for the ride.

Wish I didn't know how true THIS is. :P

More stuff on mercury....

You post info like this so often and yet, I'm often just in shock over it, lol. Calomel in beauty cream...fortunately I don't use much of that stuff, and I use mineral makeup, but sheesh, who would think about this stuff...I DO dye my hair (or have it dyed at the salon more accurately).

(I'm not too sure about that. I looked at CDC on this and she didn't meet alot of there requirements....but some).

I'm not so sure I would soley trust what the CDC says on anything, but that's just my angry-over-the-lyme-thing with them thing. :P:lol:

Those shoes and that robe sound so cute and cozy! You know what I love? I would love to have those Marabou slippers! You know, the heels with the feathers on them? Those are so cute!

Cute, but would they be comfortable? :P The first thing I did this morning when I got out of bed was to put on my pink furry flip flops. :lol:

About the low blood sugar....shaking, dizziness, feeling hot, etc. I had all that when I first went on the candida diet and cut out carbs and sugars. It was VERY bad....I was shaking and NEEDING candy and pasta. I would feel weak...like I was gonna pass out. I remember one time I was trembling as I tore open a snickers bar...I couldnt get it in my mouth fast enough....and I thought I would pass out if I didnt eat it.

I think alot of it is cravings and withdrawl...in my case it passed. You get past it and the cravings stop. I stayed on the diet totally free of carbs and sugar for 4 months and I never experienced those symptoms after the initial withdrawl...once everything passed I was feeling TONS better than I'd felt while still eating those foods.

Exactly what happened to me only it wasn't a snickers bar that I had to inhale... :P The craving for sugar that candida can produce is truely amazing and it can most certainly affect body functions. I was extremely weak and shakey the first time I went low carb, but after the first two-three weeks, I had more energy than you can imagine and the cravings stopped. Completely.

All my problems started again when I started taking little bites of stuff. I just can't do it.

But, I didn't get that same feeling this time when I went back on the candida diet, which is one of the reasons I was thinking candida wasn't a huge problem for me. It's slowly but surely sinking in that it IS a problem and that I really need to get serious.

rinne Apprentice
Rinne-

My tastes have changed since being sick but over all there about the same. I don't have much of a sweet tooth the only sweet I really love is ice cream, or frozen yogurt- (possibly rinne bars?) . I love smoked salmon!! I actually love mos things smoked. A few things I eat now I love toast with smoked salmon , butter(now butter substitute) thinly sliced cucumbers and red onion. I make a thin crust pizza with hommade sauce some ground lamb caramamlized red onions and sauteed spinach. I am a dork and love spinach . I make a few pasta dishes usuallly with olive oil fish and vegees. I ahve this good reipe for a creamy pasta dish with smoked salmon. I use tofutti creamcheese with it I kow it sounds weird but its really good!!! Tofutti cream cheese has soy which I try to avoid but as long as I carla it and don't rachel it I can have alittle of it. I make alot of these paste/ spreads with seeds( pumpkin or sunflower) ground up with olive oil and vegees and put them on corn tortillas.

The pasta dish with salmon does sound good, I've been avoiding soy and all grains including rice, the corn tortilla was my "being bad". :lol: I lead a very dull life. :lol: If you share your salmon pasta tofutti recipe I may make it when I am feeling really reckless or should I say wreckless. :P

I went a whole day without one rinne bar. :ph34r::o:lol:

.....

Cute, but would they be comfortable? :P The first thing I did this morning when I got out of bed was to put on my pink furry flip flops. :lol:

Donna, thanks for the update.

I now want furry pink slippers. :lol:

Rachel, so many of my symptoms have improved and I am sure some of it is related to detoxing the mercury.

Jin, I know for me that when I am on the sugar loop, as in candida is running the show, then the worst of the withdrawal from the sugar is only about two days and once I am through that then sugar doesn't even taste good to me. I'm working myself up to it again as I really have overindulged lately. On the up side I have gained weight and I am grateful that I can gain weight again.

Andrea, I hope you thoroughly enjoyed your treats. :)


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CarlaB Enthusiast
It worked for me! The candida diet ALONE was the only reason I was able to function again and return to a full 40 hour work week after having been on disability for 2 years.

ABSOLUTELY!! Getting rid of the candida and the amalgams gave me over a decade of healthy years. Some symptoms, but not enough to know I was sick.

Then, four years ago when I got sick, I did the candida diet again. NO carbs except for veggies. I even got half-n-half in my lattes because it's lower carb than milk. I avoided corn, carrots, etc.

I got BETTER. Not completely, but much better. That lasted for a while, then I progressively got sicker again ... but I'd be much sicker now if it weren't for that.

And you do feel worse before you feel better because you herx.

I'd like to eat like that now, but anything I eat makes me nauseous. I also am too weak to cook for myself. I would worry about losing weight eating like that, but last time I gained 10 pounds ... probably due to the breve lattes! LOL

You WILL feel much better on a VERY strict anti-candida diet, but you will feel worse first.

I'm thinking I might have to try it myself ... :( Though I don't seem to have much of a candida problem. I think it's just more along the lines of how we're meant to eat.

CarlaB Enthusiast
Your new furniture sounds nice! It is wonderful you guys got to move in so quickly! That house sounds wonderful!

You know that we've lived her since Jan. 2006, right? I think you do, but I don't want you to think we just moved. Actually, Morgan and I stayed back in Indiana until she graduated in May 2006, then we joined the rest of the family.

It's funny because we built our old house, and it was absolutely designed for us and perfect ... but I LOVE this crazy, old house so much ... and it's far from perfect!

CarlaB Enthusiast
I am a dork and love spinach .

Hmm, I must be a dork, too. I don't eat much spinach right now though because it's hard to get out of my braces.

I had trouble playing my flute at Mass today ... I didn't have enough breath support to get the notes out. :( I just realized today that it was the lack of breath support causing the problems ... that's why I play so much better when I feel better.

It's one of the kid's birthdays today, so we're going to see Pirates of the Caribbean.

AndreaB Contributor
Don't worry, we won't let you forget! :P Yes, Lyme is apparently my main issue...seems weird to me, but he found it so clearly both times. And, both times the organ most affected is my thyoid...even stranger. :huh: So, this may be why I have so many thyroid symptoms, but it never shows up on thyroid testing...there's nothing actually WRONG with the thyroid, but it's being surpressed or affected somehow by the lyme.

The differences this time were the types of bacteria...last time he didn't find so many, and they weren't specific.

I thought that list was a little bigger but I didn't remember.

I'm not so sure I would soley trust what the CDC says on anything, but that's just my angry-over-the-lyme-thing with them thing. :P:lol:

I don't trust them but I thought I'd see what the list said. I'll have to do some more research.

I realize that children go through the terrible 2's and on but I really think metals have played a part in how she is now. The problems we are having now have escalated over the years.....so getting more and more sensitive and moody.

I went a whole day without one rinne bar. :ph34r::o:lol:

Good for you! :D

Yes, I did enjoy my treats. :D

Hmm, I must be a dork, too. I don't eat much spinach right now though because it's hard to get out of my braces.

I love spinach too. :)

Mtndog Collaborator

OMG- I leave for a day and have to read 7 pages!!!!!!!!!!! Must never leave again :P

Interesting about the shellfish- I'm thinking maybe it is a problem as the sickest I have ever gotten were the two times I ate at one particular Legal seafoods location (they have a gluten-free menu) and I ALWAYS attributed it to them doing a poor job with gluten cc. Hmm...I know shrimp was involved once. But i ate lobster at another of their locations and didn't have a problem. I was at a BBQ yesterday and a lot of people said that it sounded like an allergic reaction. May have to wait a bit and try shrimp again and see if it happens. If I have to give up shellfish I will be mad :angry: Actually- my favorite is crab. dagnabit!

Carla- You eat like my husband. He just likes to "taste" a bit of brownie and ice cream. I think he's nuts. He carlas his gluten-free brownies and ice cream. I rachel them, but most show restraint in the future. tried to carla some sunflower butter last night. But could I? OH NO......totaly rachel-out! I used to carla pizza- I always only wanted a half slice for some reason.

so- morning. Morning people are: Mia, patti (and her crap-shoot) :P

Morning yuckys are: Bev, Rachel, carla,

Donna, Charlie middle

OMG- someone else who hallucinates smells! Thank God I'm not alone...I hallucinated skunk last night. Hubby thought I was crazy.

Oh- interesting news I found out yesterday from a friend who lives in a nearby town that has ENTIRE families with neuro-Lyme

SusieQ (aka squats with wolves) TOO FUNNY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What a trip that must have been. Hope you enjoyed your chocolate yesterday.

JUDY- I CAN"T BELIEVE YOU WENT TO RATEMYPOO!!!! AHHH NOOO!!!!!!!!!!!! :ph34r:

Andrea- I got a case of Enjoy Life choc chips like 5 months ago and still have a bunch left. do you want them? My only concern is melting in transit. PM me if you do.

OK- must divide up posts.

Mtndog Collaborator
:ph34r: Guilty party here...but I'm much better than I used to be. :P That's why I can't do the one bite thing that Carla spoke of...the yeast cause the most intense cravings so one bite will start it all off again.

Omgosh! Someone give me some PB and chocolate chips...I could just sit with a jar of PB and sprinkle chocolate chips in it.

Oh please oh please oh please. Donna- you and I could sit in fluffy robes on down-filled couches or chaises doing this together. :rolleyes:

andrea- Glad you got your treats!!!!!!!!!!! I missed what happened to your brother? But glad he is OK. Can i have a quick synopsis?

I have to tell you that talitha sounds so much like my 3 1/2 year old niece and my sister when she was young. It's strange watching my niece because it's like watching my sister grow up all over again- same temper tantrums.

AndreaB Contributor
OMG- I leave for a day and have to read 7 pages!!!!!!!!!!! Must never leave again :P

Yes, you can never leave. You aren't allowed to have too much of a life if you want to keep up here. :P

I'm beginning to think the estimate of 70% east coast and 40% west coast exposure to lyme may be on the conservative side. :ph34r:

AndreaB Contributor
andrea- Glad you got your treats!!!!!!!!!!! I missed what happened to your brother? But glad he is OK. Can i have a quick synopsis?

My brother was having digestive issues with bread (but not pasta) and he also had what looked like DH on his arms. I told him to go gluten free and that there was no turning back since he had DH.

In talking to him yesterday he reported having more energy, being able to climb stairs a little easier and I had forgot to mention that some of his spots are fading. He can't believe that gluten can make so much of a difference.

He's obese and is hoping to be able to lose some weight now. He's never been successful. I told him gluten could be affecting that. I also told him he doesn't want to starve himself or his body is going to hold on to every calorie he eats. The definate plus side is that he is eating healthier. :D

jerseyangel Proficient
Oh please oh please oh please. Donna- you and I could sit in fluffy robes on down-filled couches or chaises doing this together. :rolleyes:

Ooh--can I come, too :D

some of his spots are fading. He can't believe that gluten can make so much of a difference.

The definate plus side is that he is eating healthier. :D

The spots, too? Wow--I'm glad he gave the diet a try and is seeing some changes for himself. ;):)

Keep us posted--would he consider joining up here?

AndreaB Contributor
Keep us posted--would he consider joining up here?

He doesn't have his own computer. I don't know if his roommate would share or not.

I have mentioned the forum to him though. :D

jerseyangel Proficient

Andrea,

That's good. Maybe sometime he'll take a peek, and you never know! I'm just so glad he's off to such a promising start.

My computer is annoying me :angry: Last night, it was loading so slow that I gave up and went to bed. Even now, it's taking longer than usual.

Well, off to the grocery store and Starbucks for tea. Be back later :)

AndreaB Contributor
My computer is annoying me :angry: Last night, it was loading so slow that I gave up and went to bed. Even now, it's taking longer than usual.

Our computer is really slow at times too.

Yesterday (and this has happened before), we could only get into this site. Nothing else would come up. We always have to reboot to get the other websites to work.

Rachel--24 Collaborator
I'm beginning to think the estimate of 70% east coast and 40% west coast exposure to lyme may be on the conservative side. :ph34r:

Andrea...it is a bit on the conservative side cuz the Dr. actually stated 90% on the east coast and 40% here in Nor. Cal. I dont know if she was referring to the whole west coast with 40%...I just heard "here in our area they estimate that 40% have been exposed".

In talking to him yesterday he reported having more energy, being able to climb stairs a little easier and I had forgot to mention that some of his spots are fading. He can't believe that gluten can make so much of a difference.

Yay...I hope your brother does well with this and also loses weight as a result. :D

Patti....enjoy your Starbucks! I'm so jealous when I see everyone at work with their Starbucks in hand.

Thank God my store doesnt have a Starbucks inside....most Safeways do now.

One of the first things I want when I get better is a caramel frappacinno. I dont think I ever drank Starbucks when I was healthy....I started drinking them the first couple years I was sick. I totally missed out on alot of years of yummy caramel frappacinnos. :(

Bev....I've heard of towns where whole families are infected with Lyme. I'm pretty sure in those areas there must be other things contributing...possibly a moldy environment?? I've read on LymeNet of entire families getting sick after moving into a house with mold problems...then all the family testing positive for Lyme. They were not sick until hit with the mold exposure.

I really think that most of the population has been exposed to Lyme but it really takes more assaults on the body from other sources to really weaken the immune system allowing the lyme to become a problem. Thats the way it seems to work...lots of people can have the exposure but not get chronically ill.

I posted this a long time ago...you may have been gone during that time but this is a documentary about Lyme that is being made. "Under Our Skin" The Untold Story Of Lyme Disease.

Open Original Shared Link

In the "sample characters" section I read this...

Elise, an expectant mother

"When we moved to this town, the people we bought the house from said, 'Be careful of Lyme disease.' Then we met all of the neighbors and we found out that every house had at least one case, and in many houses all of them had been infected

jerseyangel Proficient

I never made it to Starbucks--or the grocery store :(

About 2 miles from the house, my stomach started cramping up and I felt nauseous. I always panic in those situations, so Mark turned the car around and brought me home.

I hate this--it's just what Miamia and I were talking about yesterday....

Gonna try to at least hit Acme for a few essentials in a little bit.

happygirl Collaborator

Ditto to what bev said...we go away, and it takes forever to catch up!!!!! I just finished reading.

Patti---that is the absolute WORST. I am sorry that you had "issues" today. xoxo

dlp252 Apprentice

Okay, so it's soft down filled chaises or sofas for Bev, Patti and I...and pink furry slippers for the rest. :P

I went a whole day without one rinne bar.

I now want furry pink slippers.

:lol:

I'm thinking I might have to try it myself ... Though I don't seem to have much of a candida problem. I think it's just more along the lines of how we're meant to eat.

See, this is what I thought too, but I am really starting to believe that anyone with lyme has the tendency to have, or develop if they don't have already, candida problems.

It's one of the kid's birthdays today, so we're going to see Pirates of the Caribbean.

Oh, man, I wanna come! :P

I realize that children go through the terrible 2's and on but I really think metals have played a part in how she is now. The problems we are having now have escalated over the years.....so getting more and more sensitive and moody.

I bet it certainly didn't help!

Well, off to the grocery store and Starbucks for tea. Be back later

Oh, man, I wanna come! :P:lol: I LOVE Starbucks and almost stopped yesterday...there's one right next to BioSET!

Donna...dont know if you've ever checked out this site but Scott is pictured in the "Faces Of An Epidemic" section. He's in the second row..far right.

I think I'll have to ask him how production is going for this movie....I dont know if they have all the funds for completion or not. Seems its been in production a long time. :(

It will be great for awareness if it ever gets out there.

Oh, duh, lol. I never realized that site had a site. :P I saw the movie, but never noticed the website part. :blink: Yep, there he is...some of the other people look familiar too but probably can't be. I'll watch the movie again tomorrow at work...it's been a while since I watched...and I don't think I knew I had lyme at that point.

Mango04 Enthusiast
I'd like to say I'm just short of 'obsessed w/ words', but I might be unequivocally obsessed. Unfortunately it leads to a lot of pet peeves about language - lately it's newspeople on tv saying "an historic". To me it sounds as wrong as saying "an history test", but I swear they say "an" ~5x more than "a".

Stupid to have this nonsense bother me, huh?

One fun site for wordsmiths is

www.word-detective.com

You'd probably enjoy it.

random drive-by:

I think I've posted this before, but while we're on the subject of words, "pumpernickle" is a great one :lol:

Did you know that by derivation pumpernickel means "bread that makes you fart"? In the dialectal German of Westphalia, from which it comes, pumpernickel was "originally an abusive term," says The Barnhart Dictionary of Etymology, "a compound of pumpern to break wind + Nickel goblin, rascal."

....from What in the Word? by Charles Harrington Elster

Judyin Philly Enthusiast
That's why I said I could do without it--it's disgusting!

I can't believe you went there :o

I CAN'T BELIEVE IT EITHER...............I'M STILL REGRETING IT

BIG TIME

IT KEEPS POPPING INTO MY HEAD....I DO THAT...ESP WITH AUTO ACIDENTS......CAN'T GET RID OF THE VISIONS...WELL GUESS I DIDN'T KNOW HOW BAD IT REALLY WAS.

CAN'T EVEN TYPE ABOUT IT.........................UCK

JUST CAME ON LINE AND THE FIRST EMAIL WAS PATTI'S SO HAD TO RESPOND..

WILL READ ON AND TRY TO FORGET............................ :ph34r:

**********************************************8

NOW TO BETTER THINGS..

UP AT 6:00 AT THE ART SHOW AT 7:15.

SET UP BY 9:00

IT WAS JUDGED AND THEN AT 12:00 SAID THEY WERE CANCELING DO TO RAIN.

NOW WE HAVE TO DO AGAIN ON THE RAIN DATE FOR NEXT SUNDAY

JIM IS THE FEATURED ARTIST OF THE MONTH AT THE MEDIA LIBRARY FOR THE 2ND SATURDAY ART EVENT ON SAT NITE FROM 5-9...WE HAVE TO BE THERE

THEN SET UP AT 7:00 THE FOLLOWING AM...

RIGHT NOW I'M DEAD..LEGS AND FEET ARE KILLING ME.

GOING TO READ THE FORUM AND THEN TAKE A NAP.

HOPE ALL IS WELL WITH MY DEAR FRIENDS.

HAPPY SUNDAY..ALL

JUDY

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      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Most likely cross-contamination I believe.
    • cristiana
      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
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