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Omg...i Might Be On To Something


Rachel--24

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tom Contributor
It is one of those perfect early summer mornings

Well THAT sounds hard to beat. I love the smell of the air at any time that could make someone say that.


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tom Contributor
:ph34r: I want to eat the freshly-caught fish....

OMG YES!! I've been meaning to weigh in on this. Pretty hard to beat a fish so fresh it was still alive after the fire was started!

(Or is dingy's desire unfulfilled, victim to disciplined deprivation? Hehe but <confused> :huh: )

Since I don't think I have that dreaded mercury problem, I'll eat most fish. Not the ones most likely to be high in merc, which, last list I saw didn't incl much of what I want most anyway.

Aren't bottom-feeders worst? What w/ the 'heavy' in heavy-metal and all.

Morning all! Feeling much better today. . . . .

I DID go to my magic place . . .

Hugs and love to all! I have to work in garden this morning - gently -

Yay great to hear Pseu-zhan!!

I'd thought I FULLY understood "magic place" (and have a 26yr old quaalude scar to prove it :lol: ) but methinks yours must have the ability to compress a few days rehab into one injuriously-imposed "lazy day". :)

Garden work even! Color ME Impressed!!

dlp252 Apprentice

That lodge is someplace I might like to be right now. :P

Rinee - I'll go back and get what Andrea posted...don't try to find it, lol.

Wow, quite impressed with a whole bunch of you today. :P

tom Contributor
(tom adds - Re: Lisa/Tabasco)

I asked Scott if he knew of anyone in your area....he didnt know anyone of over there. You might have to travel a little to see someone good.

Sheeesh am I losing my mind again? I thought u both were in Phrez-gno!

:huh:

tom Contributor
hmmm....I think it's the over-excitement of finding yourself in Rachelville. See, we all enterered into it gradually.....and BAM! here you are, in the vortex. :lol:

<she said enterered>

OH!!!!!! SO unfair to typo-tease!!!!

:lol:

DingoGirl Enthusiast
I'd thought I FULLY understood "magic place" (and have a 26yr old quaalude scar to prove it :lol: ) but methinks yours must have the ability to compress a few days rehab into one injuriously-imposed "lazy day". :)

Garden work even! Color ME Impressed!!

:o um....not THAT magic of a place...:lol: I injured my back in my late teens, twisted funny during a dive and have never been the same. :( I remember having to soak in the tub for days.......heating pads...ice....the last time I had any drugs specifically for my back was in college - some type of muscle relaxants that made me QUITE goofy, I recall, at this very serious dinner that I had to attend....if any of you remember Elaine on Seinfeld when wrenched her back on that horrible fold-out bed at Jerry's parents' house......and she took the drugs....."STELLLLLLLLLLLLLLLL-LLLAAAAAAAAAAAA........." :lol::lol::lol: well it was not unlike that.........cracks me up to this day to think of it.

so have had nothing more than Ibuprofen since, for pain. Did SERIOUS further damage to my back through weighlifting.....oh how I regret that now!!! My back really ached whilst working at that wretched art store - up to 8 hours on my feet non-stop.....it is better now BUT evidently I cannot jump off a bouldering wall EVER, from ANY height! :huh: Compressed or jostled my spine, and sciata, in a VERY bad way.

So yesterday - yes, Tom, a few days' recovery into one!! The *magic pills* have to last me the rest of my life, I think. :P they are pretty fabulous, even if you feel a twinge of pain, may I just say that, you do not really care. :lol:

So the "gardening" today only consisted of mowing the lawn, some watering, and 10 minutes of weed-pulling, nothing more, friends. I do feel the pain today, but will take nothing for it, I feel it is quite necessary to feel the pain on such days so as not to twist or further injure.....I believe Andrea mentioned something like that just recently.

Gorgeous lodge....yes, Donna, we should BE there!!!!! We should ALL be there!! :rolleyes:

Well, I am off to play!!!

:)

GRUMP 1 Contributor

<pouts> I bet Carla'd let Charlie or Grump vote!

I'm going back to my ROOM!! SLAM!!

Jin - the mystery cc is soooo annoying huh? Hope you're better tomorrow.

Hope EVERYONE's better tomorrow!!

No I did not get to vote. But I will vote for you being able to vote.

Ok all hope this all turns out right. Need to get out of here now.

Hope all have a GREAT Fathers day tomorrow. The boys and I are going to go fishing off the bank. Will let you know how it goes.

Grump


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tom Contributor
Yeah i think my father king of peanut butter- literally puts it on everything!!! Does not quite understand what its like to have to live without these things- I should say necessasities

I can say, with 100% confidence, that the 'missing out' feeling does eventually disappear completely. I first started going "obvious wheat"-free very long ago.

There's a stretch of years that didn't quite plant much in the way of permanent memories, but I was "off" wheat starting somewhere betw mid'97 & 2001.

Pretty telling admission that I can't narrow it down any further huh?

Anyway, I haven't had the slightest thought of missing the old favorites in quite awhile now. Not that there's not an occasional daydream. But no bad feelings.

It'd be as silly as feeling sad that I'm really *not* on a tropical vacation w/ Jessica Alba. :P:lol:

tom Contributor
....."STELLLLLLLLLLLLLLLL-LLLAAAAAAAAAAAA........." :lol::lol::lol:

Oh LMAO :lol::lol::lol:

Pray tell - are we talking potentially YouTube-worthy if it had existed?

CarlaB Enthusiast

Hi all! I've been busy, don't know if I'll be able to catch up.

Yeah....see this is what I had read a long time ago too. This same article written by that same Dr. explaining the Western Blots.

This is exactly why I asked Dr. Harris about my IND's....because I had *thought* they were significant.

He said that they werent....it just means they should redo the test because its inconclusive.

I don't think the two contradict each other. All the doctor was saying is that the fact that they could not say negative shows further testing needs to be done after an abx challenge. I think they're saying the same thing in different ways.

Their biggest impact song by far was a medley of sorts - "We Are The Champions/We Will Rock You". It's 30 yrs old this yr and is still played in sports stadiums nationwide and perhaps in lands beyond. I'd certainly expect their own U.K..

And not just by the stadium personnel.

When the fans stomp & clap to make that

Bomp Bomp boom!

Bomp Bomp boom!

THAT is the beginning of "We Will Rock You".

Brings back high school memories.

My homeroom teacher was the hockey coach. Our team stunk. He told them that they could not win state, but if they did, he'd eat a carnation in front of the whole school.

He ate that carnation ... we sang that song. :lol:

Yup, I was in HS in the 70's ... graduated in 81.

CarlaB Enthusiast
Hey....did anyone else here get a pm from Ron Hoggan...the guy that co-wrote Dangerous Grains??

Nope. My bet is that he only read the first post.

I saw like 30 guests on here earlier tonight. :huh:

That's cause we're famous. :P

Anyone have this waking up WAY earler than you'd like after not falling asleep forever too?

You'd think it'd be easy to sleep in.

Yes. I wear ear plugs to bed, it helps.

I asked my father if he thought when i was better I sould be able to eat jars of almond butter in one sitting- he was like "would you really want to do that?"

Some people just don't understand!

I used to crave salty things a lot. I've never really craved sweets, but I've liked to have a little something sweet after a meal (you should see how long it takes me to eat a chocolate bar ... you know those huge ones that they have at Wild Oats ... can't think of what they're called) ... I used to eat ONE piece after dinner every night. That's all I really wanted.

NoGluGirl Contributor

Dear Everybody,

I am really excited about my gift for Dad. It is really neat. I know he is going to love it! I got him a twisted Venetian glass pen from Levenger! I have been using the gift for leverage since it arrived on Wednesday! That way, he cannot irritate me!

Next year, I am going to order it sooner! Then, I can use it for leverage much longer! :lol: Yes, that is my evil plan! Hopefully by then, I will be well and moved out! I am tired of getting glutened from my parents! I know I got glutened this week, because (Scat talk warning!) my poop is floating again!

Sincerely,

Jin

CarlaB Enthusiast
And HERE's something I think of every time I see your header - u joined on my birthday! :)

I joined on my hubby's birthday ... I find that odd ... but at the time he was living in Ohio with five of the kids and I stayed back in Indiana until our oldest graduated from HS, so we couldn't have gone out or anything for his b'day.

No I did not get to vote. But I will vote for you being able to vote.

Nope, you are here for our entertainment. You men may vote amongst yourselves, but it has no weight in Rachelville. You will need to fight for men's suffrage.

NoGluGirl Contributor

Dear Rachel,

Thank you for the info on ART. :D That is interesting stuff you have been posting. I also like what you posted about mercury filling removal. I have read about Hal Huggins D.D.S. and wish I could go to a biological dentist. We actually have a shortage of dentists in general here.

The good thing is, I have no mercury fillings. I only just got a root canal last summer. I made sure it was a composite filling. I need two more root canals, but am not sure if I should get them pulled instead or not. :unsure: I will need a partial if that is the case. They can have mercury as well.

I guess Ron Hoggan did not get the chance to read the entire thread! :lol: Gee, I wonder why? It is only 1200 plus pages! That should not take too long, right? :lol: Compared to reading Shakespeare, this should be easy!

Dear Donna,

Oh no! How did the geese get poisoned, then? The investigation revealed they were poisoned by Auxigro and their food. Now what are we going to do? :o Well, at least you liked the story! However, these new finding warrant a new investigation. :blink:

Dear Mia,

I am so glad you like your new therapist! He sounds so capable! Plus, he seems like he could really help you! :) You are not a nerd, either! It is great you have a healthfood body! That is why you are a Rachelville chef! You should be proud of yourself for having such willpower!

I understand why you do not like G.I. doctors. I hate them. All of the ones I have seen are rude. They also think they know everything there is to know. <_< "You could not possibly be Celiac," the one said. We know how that turned out! :rolleyes:

Dear Patti,

I cannot have gluten-free doughnuts either! :( They always have yeast! I get D from it! Stupid yeast! :angry:

It messes up everything for me!

Dear tom,

Alaska sounds nice! Fishing is something that scares me because of the worms. I hate worms! I like to eat fish, though. You catch it, I will cook it!

I was happy to see the information on Queen. A lot of people do not know anything about them. Like you said, they probably thought they were a one-hit wonder. They had plenty of great songs. The group just never got the credit they deserved for them.

I have difficulty sleeping as well off and on. There are times I am tired, but hardly sleep at all. I may have three or four days straight where I can only sleep a few hours. Then, I will have a few days where I sleep as many as twelve hours.

My sleep schedule is really messed up as well. I will be on a normal schedule for a while, where I will go to sleep at 10pm and sleep until the next morning. Other times, I am waking up at midnight and going to sleep the next day at around noon!

Dear Susie,

I agree that eating only a quarter of a doughnut a week is pure insanity! :lol: That cannot be normal. There is just no way. I bet Dr. Phil would agree. Carla could be certifiable! :lol: (Just teasing of course, Carla!)

I am glad you enjoyed the trial coverage! :lol: It is so rediculous, but it was fun to make up! I cannot even believe I made it up! I cannot blame Percoset. It is good you came out of your coma, so you could be back here with us again! ;)

Elaine on Seinfeld! :lol: That is hilarious! Too bad that Susie episode was not on tape! Those pain meds can really do weird things to people! I really only take Tylenol or a sinus pill when needed.

Dear Carla,

Your restraint is definitely admirable. I wish I could say the same for myself! :lol: I am doing better about eating healthy, but get stuck in a food rut. I may need to do a rotation diet. Some of this trouble could be from other allergies. I heard Celiacs often do not notice other allergies and sensitivities until they have been gluten-free for a while.

I bet that was a great assembly! :lol: I wonder if the carnation was tasty? We had a fun assembly where some male teachers cross-dressed as the Spice Girls! Then they had to dance in front of the school! It was so funny!

Dear Charlie,

Thank you for your thoughts on the copyright issue. I am sure even in other industries besides the video game industry, you pretty much have it tossed into the trash if there is no submission form. I know for a fact Marvel warned about this. Intellectual property can be a difficult case in court. I want to have my ducks in a row.

It sounds like you have dealt with this type of thing. It can be very unpleasant. My trouble is, I am emotionally attached to everything. That is problematic. My art portrays my feelings, frustrations, and hopes. Letting go of that is like relinquishing my right to be an individual.

I am sorry to hear about the writer's block. Inspiration often comes to me at the strangest times. However, I have found writing with a pen that writes in purple is great to get the creative juices flowing. It sounds quirky, but it works! Whenever I am at a road block, this really helps. Try it! ;)

Dear Rinne,

That garden of yours sounds so heavenly! I would love to see a picture! I love pansies! They are one of my absolute favorite flowers! Those flowers just look so happy, like they are looking up and smiling at you!

Dear Lisa,

I understand feeling screwed no matter what you do or do not do. It feels like a major risk either way. I am not surprised about the severity of your symptoms considering the amount of mercury fillings you had. No wonder you are so sick! Ten fillings! That is a nightmare!

Trust me, you will feel much worse if you keep them in. As Rachel said, it is difficult to deal with the symptoms of detox. She has been there. She also survived. Mercury has been linked to Alzheimer's and many other issues. You do not want to end up like that. My grandmother is lucky to know anything. She is always scared and confused.

Dear Andrea,

It makes sense to me that you do not want T or the others undergoing treatment they do not need. If they are able to get the bad stuff out of their system with supplements, I do not see why anything else should be done. I hope you guys do not have to scrimp too much. That is so hard to do. You should not have to reduce your food. You are already limited in that respect.

Thank you for providing the information on Dr. Sheehan. I have the link bookmarked now. I can go back to it when I need to. That is a good thing to have readily available. I have no idea how I could find someone here or near here that does this type of stuff. If I e-mail Scott, he might be able to help.

Dear Grump,

I bet you and your sons have a great time! It will be good for you! Maybe you will catch a huge fish! Perhaps a relative of Carla's attack bass her daughter caught! We will love hearing about it!

Sincerely,

NoGluGirl

P.S. Judy, Julie, Bev, and Laura --- Hi! Where are you guys?

rinne Apprentice

I am having something truly strange happen and wonder if any of you have had anything like this experience.

The peripheral vision in my right eye is like a ferris wheel of light though I'm only seeing half of the wheel. :unsure: Before it started happening I felt almost as if I was going to faint.

.......

Seriously--how could anyone misconstrue anything you post as being irritating? :blink: You have a very kind, gentle way with your words.

Thanks Pattii, how sweet of you to say. I can be a brat though. :P:lol:

Hehehe couldn't help but think of last year in Alaska when 3 of the days were spent at a hotel w/ no in-room fridge, and over an hour from any store whatsoever - much less a store w/ anything useful to ME - and I survived on primarily almond butter, w/ a few rice tortillas, and some apples.

Great spot tho. Also a very popular bar & restaurant. Visited it w/ my brother Pat every time I'd been in Alaska. Last time, about 2-3 hrs into the ride, we parked the snowmachines (snowmobiles to non-alaskans) on the 6-8ft snowpack and strolled in for his favorite, thick spicy chili - sure to warm up any intrepid winter traveler.

His memorial was held there, as it was the only place big enough w/out heading all the way back to Anchorage. Still wasn't big enough.

.....

I'm glad you shared this story. :)

Well THAT sounds hard to beat. I love the smell of the air at any time that could make someone say that.

:)

......

I used to crave salty things a lot. I've never really craved sweets, but I've liked to have a little something sweet after a meal (you should see how long it takes me to eat a chocolate bar ... you know those huge ones that they have at Wild Oats ... can't think of what they're called) ... I used to eat ONE piece after dinner every night. That's all I really wanted.

But then you are Carla of carla-ing. :P:lol:

The eye thing seems to be clearing up. Truly bizarre. For a while I thought it was just the light hitting the keyboard but when I got up I realized it was me.

I'm thinking brain lesions. :o

Bad bugs. :rolleyes:

tom Contributor
This is exactly why I asked Dr. Harris about my IND's....because I had *thought* they were significant.

He said that they werent....it just means they should redo the test because its inconclusive.

I asked him if it meant that the tech *saw* something....not strong enough to be "clearly" positive...but still *something* there??

He said no....it means the tech couldnt get anything "clear" either way. He wasnt comfortable to call it negative and not comfortable to call it positive....its not a weak positive. Its inconclusive.

I'm pretty sure IND is short for Indeterminate.

It's pretty common lab jargon, in my experience.

Any good lab practitioner knows, in far more detail than the end-user of the results needs to know, all the ins&outs, limitations, possible sources of deceptive results (equipment precision, humidity variation, material purity/variability etc), and just about all other possible circumstances (& combinations thereof) that can cause the signal/noise aspect of the results to force admission of a "heck *I* can't really say" result.

Like a marble in a box - u can shake it, tilt it etc and be pretty darn sure it's a marble, and that it's ONE marble. But until u can open the box and look, its color is IND.

(See I don't have to *just* be goofy!! :lol: )

P.S. Sure wish I could use the QUOTE button. It just doesn't work on this phone.

tom Contributor
He ate that carnation ... we sang that song. :lol:

:lol::) gotta smile @ prompting a memory as fun as that!

tom Contributor
I am having something truly strange happen and wonder if any of you have had anything like this experience.

The peripheral vision in my right eye is like a ferris wheel of light though I'm only seeing half of the wheel. :unsure: Before it started happening I felt almost as if I was going to faint.

It might be what's called photopsia. Not the almost fainting part. I'd have to guess that whatever caused that also caused the ferris wheel.

Mine was pretty small and temporary and not at all carnival-related.

NoGluGirl Contributor

Dear Rinne,

I have some strange things going on with my vision as well more recently. Some of it is due to the Thyroid. However,

I think you might want to get an MRI or something. That sounds like it could be very serious. I have not have an MRI, and am worried about the vision issues I have been having.

Dear tom,

I agree that IND means indeterminant. The lab jargon can be really weird. Doctors like to make up stuff so they sound smart. What egos they have! Meanwhile, the rest of us laugh at their stupidity!

Some of these labs are not very reliable, either. That is so unfortunate. You spend hundreds or thousands of dollars for mediocre (at best) lab work. Many labs have been found to be less than proper about their testing procedures. My doctor is very cautious in relying to heavily on lab testing for the most part.

Sincerely,

Jin

tom Contributor
Yes. I wear ear plugs to bed, it helps.

It's pretty quiet around here. The slow falling asleep isn't new.

The strange new part is that upon 1st waking, "back to sleep" doesn't seem to be an option anymore. Even after only 3-4 hrs!

This week I got more than 5 just once - the night after a tiring Monday following ~4hrs Sun nite sleep. (Oh wait last night got 5-6)

Regardless of how much more sleeping should be done, once I'm conscious the brain "wants out" like a poorly-trained Big Dog.

"Stay" doesn't work.

jerseyangel Proficient

Rinne,

I have the lights in the corner of my eye sometimes but mine isn't associated with feeling faint.

I'm glad yours seems to have passed :)

Bad bugs, indeed! :angry:

tabasco32 Apprentice

Hi everyone

How is everyone today? Wow didn't wake up till 2 pm today thought it was like 12 or something. Hey dingogirl that avatar you have are you crying with that glass of wine

or are you really just very very constipated? :D

Because Magnesium Citrate can clear that right up for you.:)

dlp252 Apprentice

Hum, I don't need pain pills to go to my happy place apparently, :lol: Actually give me one drink and I get pretty goofy...sick as a dog, but goofy. :P:blink:

No I did not get to vote. But I will vote for you being able to vote.

Pretty good job on the quoting...but you still do not get to vote. :lol: Carla is right...vote amongst yourselves, but it carries no weight. :P

I am having something truly strange happen and wonder if any of you have had anything like this experience.

The peripheral vision in my right eye is like a ferris wheel of light though I'm only seeing half of the wheel. :unsure: Before it started happening I felt almost as if I was going to faint.

Oooh, maybe bad bugs indeed. I have been reading of similar things (although don't remember the fainting thing) on lymnet. Do you get migraines? Sounds a bit like an ocular type of migraine.

Any good lab practitioner knows, in far more detail than the end-user of the results needs to know, all the ins&outs, limitations, possible sources of deceptive results (equipment precision, humidity variation, material purity/variability etc), and just about all other possible circumstances (& combinations thereof) that can cause the signal/noise aspect of the results to force admission of a "heck *I* can't really say" result.

Yep, which is what happened on my biopsies for my bile ducts last year...three labs on two different biopsies couldn't decide if it was PREcancer or not. Sheesh. :lol:

It's pretty quiet around here. The slow falling asleep isn't new.

Yep, see I usually fall asleep fairly quickly, but I wake up at 12, 1, 2 and 3. On a workday if I wake up at 3 there is no hope of falling back to sleep...weekends it's about a 50/50 thing. Ocassionally, I can't fall asleep right away, THEN still wake up at 12, 1, 2 and 3. :P

dlp252 Apprentice
Because Magnesium Citrate can clear that right up for you.:)

:lol: You are killing me! :lol:

tom Contributor

JIN!!!

I hit REPLY to your post w/ a multitude of responses to a bunch of us, but in the box it only had the "dad's gift" post.

How strange.

Maybe this could happen if I hit REPLY on a non-refreshed page that's been edited, but Jin, I can't believe you'd edit out all the stuff I can see. It's a LOT!

So I've cut&pasted what SHOULD be in the reply box.

Dear Donna, Oh no! How did the geese get poisoned, then? The investigation revealed they were poisoned by Auxigro and their food. Now what are we going to do? Well, at least you liked the story! However, these new finding warrant a new investigation.

Did I see something that there was a "kernel" (HA!) of truth in the arena of poisoned goosefeed?

They also think they know everything there is to know. "You could not possibly be Celiac," the one said. We know how that turned out!

I've had both a Stanford jackass (head of their Gastro dept & advisor to celiac.org I believe) and a Phx GI (advisor to PhxCeliacs group) tell me I didn't have it. In spite of childhood diag and confirmed grandmother & niece, uncle w/ DH, sister who stopped eating wheat in Jr High, mom wheat-avoiding for as long as I can remember & gluten-free for a couple yrs now!

<grumble grumble>

Dear tom, Alaska sounds nice! Fishing is something that scares me because of the worms. I hate worms! I like to eat fish, though. You catch it, I will cook it!

Jiiii-iiiiiiin!! Summertime AK stream/river/creek salmon fishing is MADE for u! Once they leave the ocean they've already stopped eating. Bait would only get in the way! I was so shocked my 1st time. Everyone throws out lines w/ bare hooks, hoping to snag one in the mouth!!

Utterly ridiculous to me having grown up baiting hooks & using lures, trying to fool a hungry one.

It's technically illegal to keep one that's not hooked in the mouth, but even my otherwise VERY extreme stickler Park Ranger brother says "the head or darn close is good enough".

I agree that eating only a quarter of a doughnut a week is pure insanity! That cannot be normal.

I still say it's destined to become a myth or fable. Future celiacs will say their cousin's teacher's daughter's friend knew someone (who was a friend of hers from choir) who SWORE she'd cyber-met this woman who could make a gluten-free donut last 3 wks!! :lol::lol::lol:

<"she swore it was true">

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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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