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Omg...i Might Be On To Something


Rachel--24

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CarlaB Enthusiast
You have Skyline Chili??? I am soooo jealous! I got my undergrad degree in Cincinnati, and every weekend we went to Skyline for dinner and Graeter's for dessert....(no wonder I gained 10 pounds!)

I do have a copycat recipe or Skyline chili,which I make with Tinkyada pasta, of course, but somehow, it doesn't seem exactly the same....

I'm in Cincinnati. :)

If you have Kroger, you can buy it frozen or in cans. :P I eat it on a potato at the restaurant. They will make it on your own spag if you bring it in ... I never have, but I've made it at home that way and it's EXACTLY the same! But you have to have the real chili!! And lots of finely shredded cheddar cheese!!


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Rachel--24 Collaborator
Or else you're now doing egg enemas! Ewww.

ROFLMAO

Wonder what that would be like?? :blink:

Umm...I think I'll pass on the egg enemas. :lol:

I didnt mention the coffee e's to Dr. S.......just couldnt bring myself to do it. :ph34r: Its that whole "M.D." thing....I'm still a little "guarded" . :lol:

Fiddle-Faddle Community Regular
I'm in Cincinnati. :)

If you have Kroger, you can buy it frozen or in cans. :P I eat it on a potato at the restaurant. They will make it on your own spag if you bring it in ... I never have, but I've made it at home that way and it's EXACTLY the same! But you have to have the real chili!! And lots of finely shredded cheddar cheese!!

We don't have Kroger here. :( Giant Eagle has pretty much chased out all the competition here.

I used to live on Clifton Avenue, and we would walk down the hill to Ludlow and eat there....

My kids love the copycat recipe (they've never been to Cincinnati)--they just call it "chili spaghetti," and yes, we smother it with finely shredded sharp cheddar!

NoGluGirl Contributor

Dear Rachel,

I am so sorry you had a rough time! :( That tossing the cookies feeling is something I am all too familiar with! I am also stressing because now my mother thinks she is catching that stomach virus again. I just got over it. No matter what I do, I feel like I am screwed! :unsure:

I cannot get that again! It takes me forever to get over it! Plus, I have that final I have to take by Tuesday. Then there is the appointment with the hairdresser for the patch test on Monday! I am totally panicked right now!

Thanks for the Lyme Film Trailer. It is good to have that. I bookmarked it. I want my parents to see that. They probably will not watch it, or find a reason not to.

Dear Donna,

I am glad to hear the rotation diet helped you. It sounds like it could help me a lot as well! The worst that happens is it does not do much for me. The diet could at the very least reveal food allergies I did not know I had. That will help me avoid things other than gluten that irritates my stomach.

That nail polish you were talking about sounds wonderful! :) I would not mind having some of that! There is one out now OPI makes called Just Groovy that is this pretty light blue. I need to get that! It is made for hippie chicks like me!

I know what you mean with the nutbutters. I love them because they fill me up and keep me that way for a while. They are the only thing, too! Being hungry all of the time is no fun either! That is why I ate the Fritos, too!

Dear tom,

Pudding explosions are not usually dangerous, but are very hard to clean up after! :lol: Dad makes the mess, then I get stuck cleaning it. Yeah, that is new. :rolleyes: I thought you would get a good laugh out of my pancake flipping experience! :lol: I think I should get my hair done for my own safety!

The Midwest winters are mild half of the time, the other half, they are freezing! Evansville is so odd. Weather changes very quickly here. There is only one month out of the entire year where we do not get severe weather. December is it. We have had tornadoes every single month of the year but then!

The Finance test is not something I am looking forward to. I need to look at it then see what formulas I need to have handy. There are only 25 questions. However, they are worth a lot of points. I need as many as I can get!

I think the reason you did not react to soy before was due to the fact you were not sensitive to it yet. Celiac does cause other sensitivities as time goes on. I think that would explain why you feel better off of it now, but noticed no difference before. One woman on here had been Celiac and gluten-free for over 20 years. All of the sudden, she became lactose intolerent. :blink:

Mia is a wonder. I do not know how she manages not to fall over! There are times I am glad we have sofas, because moving is too much work. Sitting in a chair is work sometimes. My energy level is just not good right now.

Yes, I believe you are right about MSG being put into food prior to harvest. This is where Auxigro comes in. Rachel had mentioned this before. It is absolutely terrible. That stuff is dangerous!

Dear Carla,

Your decor sounds like it is beautiful! You probably never want to leave that room now! :lol: I like all kinds of things. If I had my own place, I would like much of the theme colors to be white, hunter green, and cranberry, with small gold accents. Gold can easily be overdone, so I would limit it to mirrors, candle sticks, etc. I really am more of a silver person.

It is good to know many other people hated Finance. It is lousy to have to take it! I am a Business Major as well. I am studying Management. What did you study? I am so glad you got a B+ on your final! Hopefully, I can get that kind of score or better!

I know about Buckeyes! They call them Peanutbutter Balls here. They are so good! My Aunt Sissy made them. My grandmother always used to make peanutbutter fudge at Christmas and regular Fantasy Fudge. I miss that!

Dear Rinne,

I have found pretty much everyone hates Finance! A friend of mine's husband said he hated it too, even though he took it years ago! She took it in college as well, and hated it. All of those calculations would not be so tedious if they were taught step-by-step. Even with the calculator, they take an eternity!

Dear fajitas,

Don't worry! We will still be here when you need us. Whenever you feel inclined to ask about metal toxicity, I know we shall be ready. One thing is for certain, metal toxicity is easy to acquire. Between dental work, our poisonous tapwater,

and vaccinations, many of us are lucky we do not already have Alzheimer's. Just ask when you are able!

Dear Nikki,

No British Bovines today? How disappointing! We miss them! They are so cute! Is it just me, or do they appear to like Monty Python? Or are they more Absolutely Fabulous fans? I am an Ab Fab girl myself!

Dear Alison,

I am glad to see you! I was wondering if you had been hanging around. Thank you for the compliments on my avatar. That is leader of my all female Mafia. Her name is Bella Carlisi. She owns the Red Fedora nightclub.

I have never had Skyline Chili, but could go for some! That sounds delicious! I love cheese with it! I never have been to Cincinnati. Dad has on business.

Dear Mia,

That is wonderful about your session! It seems to be helping already! This might really help you! We are so excited!

You have two more sessions this week, don't you?

Dear Susie,

How are you? I hope you have not been dipping into the Percoset again! :lol: We have not seen you or the dingos much! When do you get your X-Rays done? I hope everything is alright.

Dear Bev,

I am so sorry you were moldened. :( It is not fun! I cannot tolerate exposure, either. I can eat certain foods most people do not tolerate. However, there are other things I do not handle well. Breathing anywhere near mold makes my eyes burn, my head swell, gives me trouble breathing, and makes me sneeze uncontrollably. It is all over the place, even in the toilet now! WTH?

Dear Lisa,

There is bound to be some way you can gain weight. I know with your sensitivities that it is difficult to find what you can have. The amount of calories you are taking in is not enough. You cannot even maintain your weight on that. I will check out some foods and ask you about them. I am sure I could find something you could tolerate.

Sincerely,

Jin

CarlaB Enthusiast

Jin, I have a BS in Business Administration with a concentration in Marketing.

I didnt mention the coffee e's to Dr. S.......just couldnt bring myself to do it. :ph34r: Its that whole "M.D." thing....I'm still a little "guarded" . :lol:

I told my LLPA (is that a new term?) ... she said that Dr. H has recommended them and that she was going to suggest them to a couple other patients who had chronic D since they worked so well for me. I think the docs who believe in stuff like that are even more hesitant than we are to talk about it!

We don't have Kroger here. :( Giant Eagle has pretty much chased out all the competition here.

I used to live on Clifton Avenue, and we would walk down the hill to Ludlow and eat there....

My kids love the copycat recipe (they've never been to Cincinnati)--they just call it "chili spaghetti," and yes, we smother it with finely shredded sharp cheddar!

Too bad ... they carry Esther Price Candy and Graeter's ice cream as well. :) I'm sure you can order Skyline off the internet ... at least I would think you can.

My monthly sugar splurge this month was Graeters. Yum.

Rachel--24 Collaborator

As most of you know from my previous posts...Dr. S. is pretty straight-forward....he doesnt "sugar-coat" anything. :rolleyes:

He definately lets me know (in no uncertain terms) that my body is horrendously messed up...and that its gonna take ALOT of work to pull myself outta this. :(

So today I asked him (for the umpteenth time) if I can recover from this. :unsure:

Yeah...I always have to ask him that cuz I just want a *teeny-tiny* bit of reasurrance. :)

He paused for a second and then said that he's VERY optimistic about my recovery. :)

He said that he doesnt doubt a full recovery because he feels that as far as chemical sensitivities and detoxification problems....I'm working with two of the best specialists in this country.

He said that I'm extremely fortunate to be working with both Anna and Amy....he said because of this he's certain I'll be ok.

YAY!! :D

He also said that *I* seem to be much more optimistic now as well. I told him that I am.....and that I do feel like I have really good Dr.'s helping me now. :)

He said "Yeah....you have specialists....and two of the best in this country....you cant do much better than that!" :)

He said they are gonna be the ones to get me well again....he has no doubts...and he will be there when my body is ready to start more aggressive treatments. He said I will definately need chelation but it wont be until WAY down the road....and he said he'll also be giving me the Glutathione IV's whenever Amy says I'm ready for that.

We talked about alot of stuff....I'll post more later.

I feel really good about my Dr.'s anyway...but today his words just made me feel even better. :)

I do feel really blessed....basically going from the WORST Dr.'s in the country to where I'm at now....I would have to say there's still someone watching over me from up above. :)

DingoGirl Enthusiast

oh my Looooooooooooooord had so many quotes and posts and things went ALL CRAZY on me so will have to just wing it, here.....

Carla - - - I think you and I would have great fun shopping together (and Rinne, too, w/ those cupboards and such). I can make treasure out of any piece of junk you give me. ;)

RACHEL - - no toxic person conversations! and don't DONGO the information!!!! :lol: :lol: now THAT did make me crack up.

Donna - - - oh such trickery, the small Frito bag "safely" tucked away until Monday.......mooo wooo hoo haaaa hhaaaaa haaaaa..........but one small bag surely does not constitute rachelling.

Mia - - - - are you better from your appointment? I can't remember..... :unsure: but I know you have to have the saline and that is just a**cracker heinous......so sorry.

Tom - - in San Jose? what? is he flying now, do you suppose??????

Jin - - you are the funniest one, pudding explosions and toxic family and all. You make me laugh. :)

BEV - - - you already KNOW how much YOU make me laugh. :lol: Jeez, last night she was tryign to send over Benicio del Toro AND Jude Law, but George Clooney was already here making mojitos for me. ;) that's right.

Andrea - - I had something to say to you, adn I totally DONGO'd it!!!!!!!!

Alison - - you have GOT to post your copycat recipe!!! We do not have Kroeger's OR skyline Chili here. Harrumph.

Well, that's it for me. Just about to eat a piece of bread w/ nutella. Have not purchased a jar in about a decade....hope it's good.

:wub: all of you. xoxo


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Rachel--24 Collaborator

Oh yeah...Tom to answer your question (from pages back)....The *other* place is the Bay Area.

I was born in S.F....moved to Sunnyvale in 3rd grade and grew up there. Later moved to S.J. (borderline Cupertino).

I moved to Manteca in '99....when buying a home out there was still affordable. :)

Still work in the Bay Area...commuted till I got sick....I'm now staying at my moms Mon-Fri. till I get better. :)

rinne Apprentice

Okay, dingo is to forget and dongo is to what? :lol:

I'm just reading along, there's too much to respond to and besides Jin and Susan covered it all. :)

AndreaB Contributor
He paused for a second and then said that he's VERY optimistic about my recovery. :)

He said that he doesnt doubt a full recovery because he feels that as far as chemical sensitivities and detoxification problems....I'm working with two of the best specialists in this country.

Yep, I'm really excited for you. Also, if it wasn't for you I wouldn't be heading up north to see Amy's partner. I don't have an Anna up here though so IF we need to do bioset I'll have to see who they could recommend.

Andrea - - I had something to say to you, adn I totally DONGO'd it!!!!!!!!

:lol::lol:

Enjoy your nutella. :D

Okay, dingo is to forget and dongo is to what? :lol:

:lol:

I'm just reading along, there's too much to respond to and besides Jin and Susan covered it all. :)

I know. Sometimes I feel bad about that, but I'm just hurrying to catch up so I can go back to the latch hook I'm trying to get finished up. Mitch does the edges for me and my mom's birthday is next weekend.

tom Contributor
Okay, dingo is to forget and dongo is to what? :lol:

OMG grrrrrr I had just gotten back from Alaska visitor fun :), read along some, resisting responding 1 by 1 (you're welcome) then just as I was hitting [REPLY] to start on 3 replies it FREAKED!!! Bwaaa-haaa-haaaaaaaa

I'll guess the difference between dingo and dongo is about 10 wirds per minute.

tom Contributor
Dear tom,

. . . . Pudding explosions . . . . .

. . . I think the reason you did not react to soy before was due to the fact you were not sensitive to it yet. Celiac does cause other sensitivities as time goes on. I think that would explain why you feel better off of it now, but noticed no difference before. One woman on here had been Celiac and gluten-free for over 20 years. All of the sudden, she became lactose intolerent. :blink:

On this I must dissent.

And I think I have some convincing arguments.

". . .she became LI"

[Edit here to add I'm working on the assumption she felt fine in year #19]

This soy deal has been affecting me quite awhile. Minimum 2 yrs, likely longer.

If I hadn't been sensitive to it before, I wouldn't have been miserable before. You all know the drill - fog, CFS, daily hdaches that convince u it's not even plural - just one multi-year hdache, joint pain, depression etc etc. I know we've all been there at a minimum.

Yet a raving picnic compared to pre-gluten-free.

But I'm positive that all the above symptoms that wouldn't leave while giving up so many foods on the anti-candida diet, were due entirely to soy.

And the 3 previous times I checked soy just weren't for long enough. I'm more surprised than anyone.

We're supposed to be able to tell in less than a week.

I think I've had 2 short hdaches since soy-free took hold. Obviously the fog has lifted. I don't feel like I've been lifting weights after just washing my hair. Ok, so a little joint pain still there, but do I even need to verbalize on the depression? :lol:

Now, I did, of course at some point start to have a problem w/ soy. But it wasn't recent and I'm 99% sure it was well before my 1st attempt to test it.

My best guess is '04.

*duck!*

BLAM! <sploesssh> (wipes pudding from eyes)

I *said* duck!

Alas Susie, I didn't get the flight yet. It leaves tomorrow morning w/out me. Some LastMinute deal looked worthy, but it was either a middle seat in the last row of an A320 or that damned Bombardier p.o.s. w/ a stop in L.A.

No no no I say, I'll take the next one.

Site works great. Just choose Departing City here:

Open Original Shared Link

tabasco32 Apprentice
However....what does work quite nicely is beating the eggs first...like you would for scrambled eggs....then put them in a deep bowel...microwave a couple minutes and the eggs rise...like yeast. :huh:

They keep growing...puffing up until they're totally one big yellow mass....which *looks* like it might explode...but doesnt!! I love it....they're wonderful like this...totally fluffy. :D

Do you still cook them like this.? Because they will lose all their nutrition.

tabasco32 Apprentice
Warning you may all be jealous of my weekend plans......... Stool test(sad face) .

Its one of those 3 day stool tests and i don't so much mind doing it but the saline solution i ahve to drink tomorrow morning when i start it KILLS me I think i cried last time i had to drink it- it makes me really sick

I have a parasite stool test I have been doing since um Tuesday. I need five more tubes for 2 different days. But doing enymas to go number 2 will mess it up and today I had moldenen diarrhea but at the library so I miss those tubes. :o Maybe I should carry those tubes around with me. :P

dlp252 Apprentice

Okay, worst pain I have ever felt in my life. Can barely move my left arm! Took two tylenol then went to bed with a heat pack and slept reasonably well until midnight, then had to get up to use the restroom, and OMG, the pain was so bad I nearly threw up!!! Had to hurry back to bed or I definitely would have lost any cookies that exist anywhere in the world. Somehow managed to get back to sleep but woke up again at 3:00 to loud banging which I could clearly hear over my most wonderful sound machine. Turns out my neighbors are still up...it's freeeken 3:00 in the morning and they are having some sort of noise fest... I've just taken some more tylenol, had a tiny bit to eat...it's about 4:00...about time for me to go up and take a shower...perhaps an elbow or two on the wall that separates me from my neighbors...oh wait...can't do that BECAUSE I'M in SEARING pain. :P

But honestly, this is the worst pain I have ever felt. On a scale between 0-10, this is probably 11. I can barely move my left arm at all. Showering is going to be interesting!

Today I am supposed to celebrate my aunt's birthday with my mom and my aunt, but not sure I can even drive. :( Grrr. Also have to go grocery shopping. Grrrr. :P

tabasco32 Apprentice
Mia- Oh man...saline solution makes me feel like I've been burnt from the inside out! Yuck! hang in there :(

Why is peanut butter so ATTRACTIVE to all of us? What is it about it? I miss it so much....don't miss gluten, soy, dairy or even chocolate as much as I miss PB. :(

Andrea- if you're out there I uploaded some pics of the horse show for you on DS.

I know even Reese's peanut butter cups, Reese's pieces, peanut butter cookies, anything peanut butter. I am craving the planter's peanut bar, peanut butter filled prezzels they sell at Trader Joes. I bought peanut butter today from whole foods 365 but for my family not for me!

I bought almond butter for me, thanks guys. <_< The best part I like is the oil on top. mmmm. It tasted a little rancid but I ate it anyway. I will have to pray real hard TONIGHT. I also had avacado again! Will we ever learn.

Sometimes I believe like with peanut butter we have cravings because 1 we crave what we can't have or are bodies are in need of fat or we are lacking some nutrient of some sort I suppose.

tabasco32 Apprentice
LOL...Susan...I cant argue with you on this.

Toxic Person Exposure (TPE) can be very serious...detrimental to the immune system and has the ability to overwhelm the body with toxins within seconds of exposure. :o

I shall proceed with caution. ;)

HA yeah like I tell my family histerically, don't go in the bathroom, don't go in the bathroom. I just took a dumpe and the smell may be toxic with my toxic bombs. THey are like scared and say, "Nnnnooooo for real?"

I think our poops should be called warheads.

tabasco32 Apprentice
Dear Lisa,

There is bound to be some way you can gain weight. I know with your sensitivities that it is difficult to find what you can have. The amount of calories you are taking in is not enough. You cannot even maintain your weight on that. I will check out some foods and ask you about them. I am sure I could find something you could tolerate.

Sincerely,

Jin

Thanks Jin that would be so great! My new doc is a licensed nutritionist as well so I am hoping and praying.

I hope you don't get sick again as well Jin.

lisa

tabasco32 Apprentice

Sorry Andrea to hear you are in such pain! Why is your arm hurting so much? Did you hurt it or is it nerve?

Oh man I need to sleep almost up for 24 hours. I hate sleeping because I always feel worse in the morning with abdomen bubbles, pain, moving spasms. eeeekk. hope no diarrhea manana. Watching Metallica and falling asleep typing. Good night or morning all.

Good night miamia

lisa

jerseyangel Proficient
Okay, worst pain I have ever felt in my life. Can barely move my left arm!

But honestly, this is the worst pain I have ever felt. On a scale between 0-10, this is probably 11. I can barely move my left arm at all. Showering is going to be interesting!

Oh Donna, I'm so sorry...I know about pain that is so intense it makes you feel nauseous.

I hope it lessens today--you'll be in my thoughts :)

miamia Rookie

Donna-

SO SORRY you are having such a rough morning!!!hopefully some of the pain is ebbing now and you are able to enjoy or at least particapate in your aunts bday festivities.

Ok not agood morning so far. I slept so badly mostly ok entirely becasue i knew i had to wake up and take the saline stuff. Finally at like 4 i got tired of tossing and turning and i did what i always do when i ahve to take it and i was like oh i will just get up drink it and then get back into bed . I convinced myself it would not be so bad at all ........... very wrong !!!I took one sip and remembered why i was dreading taking it so much. I got through the cup though and by the time i was done i was sweating (i never sweat) and on the floor of my kitchen i crawled back into my room and into bed knowing at this point sleep was not going to happen. I really wanted to call someone but who the hell do you call when it is by every normal persons standards the middle of the night.

I finally got out of bed tried to relax and keep busy - went into my nutso mode- painted my toe nails , cleaned my kitchen , the floors , and then the cramping started.... but no poo....so now i am in terrible pain and completly afraid because i have convinced myself that i took the stuff and will not go to the bathroom.

Ok I finally did go though- thank GOD!!! and i know i overfilled the tube and i don't care i am just so thankful i went and that part of the test is over!!! now i know for the rest of the day and possibly tomorrow i will be uncomfortable - this saline stuff really messes me up, but at least i took it and it did its job and i don'thve to take anymore!!!!!

miamia Rookie
Oh Donna, I'm so sorry...I know about pain that is so intense it makes you feel nauseous.

I hope it lessens today--you'll be in my thoughts :)

Patti-

HI LADY!! I ahve not seen you in a while. How are you feeling?

jerseyangel Proficient
Patti-

HI LADY!! I ahve not seen you in a while. How are you feeling?

Hi Miamia :D I'm doing ok--I took a few days off (mostly) the computer. I just needed to keep to myself with all of the things that I've got going right now. I tend to get overwhelmed, and then it's just too much to get my thoughts together enough to post and join in the conversation.

I've been having digestive problems from the constant glutening by that sunscreen I was using. That itself causes brainfog and anxiety. Plus, I've been having palpatations and my doctor wants me to have an echo stress test. :unsure:

I know that insufficient calcium can cause this, so I went back on my calcium lactate (with magnesium in proper ratio), and within 2 days the palps are about 95% gone.

I had an echocardiogram and wore a 24 hour Holter Monitor 2 years ago and everything was normal with my heart. But I can't help but worry. Plus, we're going to be putting our house up for sale, and then I have to look for another house and I worry about how I'm going to manage that.

I am so glad to hear about your successful appointment! I want so much for you to feel better :) This really sounds great! Big yuck on the saline stuff--but I'm glad it finally "went through" and that part is over.

CarlaB Enthusiast

I was just looking on my computer for game times for the kids .... I HAD to look at this thread, but I REALLY have to go, so just a quick post. Yes, I'm out of bed today, YAY!

Carla - - - I think you and I would have great fun shopping together (and Rinne, too, w/ those cupboards and such). I can make treasure out of any piece of junk you give me. ;)

The area I live in is well-known for its antique shops. You can Google Lebanon ... they have the cutest shops ... We'd have a BLAST. The Golden Lamb is there ... so many famous people and presidents have stayed there from back when it was a stage coach stop as people were moving West ... George W has even been there ... it's like a tradition.

Alison - - you have GOT to post your copycat recipe!!! We do not have Kroeger's OR skyline Chili here. Harrumph.
WWW.skylinechili.com It has a list of groceries, and if there are none near you, you can buy it online. The canned stuff is exactly the same as in the store. It is gluten-free ... but Gold Star Chili is NOT gluten-free. The debate is over (in my opinion there never was one to begin with) Skyline is superior.
jmengert Enthusiast

Hi, Donna and Patti--I'm sorry you're in pain, Donna, and I hope that you feel better soon. Patti, I hope your glutening symptoms begin to ease soon!

Hi to everyone else!

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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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