Anybody Care To Help Me Out?

[Rpm999]

well hey everybody, i'm new here....17 years old, so pretty young

i don't know if this is the right section, but let me just say, for 10 months i've been going through complete hell....i've had a lot of blood work, only thing that came off was a celiac level...let me say, i never had any problems before but i had SOME sort of attack (felt like reflux, but could have been thyroid since barium swallow came back fine)...they usually randomly came on and weren't long, yet still scary, but this attack was about 12 hours...terrifying, it was scary, my throat basically closed up, i was amess emotionally, every few seconds it was like a rock was going up and down my throat...when i finally fell asleep, i woke up gasping for breathe crying...and ever since i've been sick with one thing after another...let me first say my symptoms:

weight loss

discomfort at waste line

urine smells off, yet no infection

bowels are off

short of breath

weird throat feelings

neckish area feels a swollen

palpitations

cough

feels like air is trapped in throat, even if i burp, it feels like some of it is forced out and it just endless feels like that

muscle/joints bother me a lot, sometimes even feels like stretching...especially around my neck, arms

senses feel very off

some trouble swallowing

but the main thing: i've had SEVERE mental based problems, everything has just been off...i feel extremely sensitive, like i'm reacting to things horribly and it just feels so different, i could go on and on but it just feels unreal, nothing feels normal, it's a struggle...memory feels shot, concentration feels shot, doing basic things doesn't feel right...my vision is really off and just feels bugged out and wide-viewed, if that makes sense....i can cry without even being sad at all, just randomly pops up...i can say that since i've been sick, my nerves have been just felt off as well...like if i'm laying, i can feel my pulse popping out of my stomache or i can just feel them being all over the place, or just acts up easily...something just feels very off and could be causing a lot....i mean think about it, all the strain from that attack and this whole time with no treatment from doctors either based on money or based on wrong accusations...puts the body through hell i can only imagine

what do you guys think? can celiac cause some things like that? could that attack have caused celiac? it just is weird, i always was fine before, aside from those attacks, and it's hard to believe that level is off now...could something have thrown it off? cause an allergy to wheat just seems awfully random...the timing is just weird....i don't have crazy stomache pains, nor constant diareah...constipation if anything, but it's just my new doctor seems to be firm against it cause of the diareah thing, EVEN THOUGH HE SEES THE LEVEL OFF...but maybe somethings throwing it off? blockage from the attack? who knows

celiac, thyroid issues and deficiencies/malabsorption are my possible ideas, since like i said i have had a lot of bloodwork for basic things....you just can't even believe what hell it's been, eating/drinking/medicines never bothered me before...i took nexium for basic heartburn, which was never a big issue and had SEVERE panic attacks....i had a catscan the other day, and right now i'm suffering cause of the dye....real panicy, shaky, crying, chills mixed with the feeling like heat is blowing on me....i'm amess right now and this just doesn't even feel normal, it feels i'm being tourtured and every little thing makes me react, especially thing

it's just been 11 months, i'm reacting to it all when i never did before, nerves just feel all amess...i refuse to take something like anxiety medicine in the meantime, cause i was perfectly fine before i've been sick and it's just....those things don't help anything, it's not even like a mask, the side effects are things i already feel, you know?

any opinions though? thoughts? what i should get tested? so much has come back normal, thankfully, but real shocking...with all this going on, i would swear i'd have something like cancer...somebody try to help, thanks to anyone who can

and sorry for that being so long and unorganized haha like i said i feel all screwed up so i can tell the reading looks that way

[Trillian]

well hey everybody, i'm new here....17 years old, so pretty young

i don't know if this is the right section, but let me just say, for 10 months i've been going through complete hell....i've had a lot of blood work, only thing that came off was a celiac level...let me say, i never had any problems before but i had SOME sort of attack (felt like reflux, but could have been thyroid since barium swallow came back fine)...they usually randomly came on and weren't long, yet still scary, but this attack was about 12 hours...terrifying, it was scary, my throat basically closed up, i was amess emotionally, every few seconds it was like a rock was going up and down my throat...when i finally fell asleep, i woke up gasping for breathe crying...and ever since i've been sick with one thing after another...let me first say my symptoms:

weight loss

discomfort at waste line

urine smells off, yet no infection

bowels are off

short of breath

weird throat feelings

neckish area feels a swollen

palpitations

cough

feels like air is trapped in throat, even if i burp, it feels like some of it is forced out and it just endless feels like that

muscle/joints bother me a lot, sometimes even feels like stretching...especially around my neck, arms

senses feel very off

some trouble swallowing

but the main thing: i've had SEVERE mental based problems, everything has just been off...i feel extremely sensitive, like i'm reacting to things horribly and it just feels so different, i could go on and on but it just feels unreal, nothing feels normal, it's a struggle...memory feels shot, concentration feels shot, doing basic things doesn't feel right...my vision is really off and just feels bugged out and wide-viewed, if that makes sense....i can cry without even being sad at all, just randomly pops up...i can say that since i've been sick, my nerves have been just felt off as well...like if i'm laying, i can feel my pulse popping out of my stomache or i can just feel them being all over the place, or just acts up easily...something just feels very off and could be causing a lot....i mean think about it, all the strain from that attack and this whole time with no treatment from doctors either based on money or based on wrong accusations...puts the body through hell i can only imagine

what do you guys think? can celiac cause some things like that? could that attack have caused celiac? it just is weird, i always was fine before, aside from those attacks, and it's hard to believe that level is off now...could something have thrown it off? cause an allergy to wheat just seems awfully random...the timing is just weird, celiac, thyroid issues and deficiencies/malabsorption are my possible ideas, since like i said i have had a lot of bloodwork for basic things....you just can't even believe what hell it's been, eating/drinking/medicines never bothered me before...i took nexium for basic heartburn, which was never a big issue and had SEVERE panic attacks....i had a catscan the other day, and right now i'm suffering cause of the dye....real panicy, shaky, crying, chills mixed with the feeling like heat is blowing on me....i'm amess right now and this just doesn't even feel normal, it feels i'm being tourtured and every little thing makes me react, especially thing

it's just been 11 months, i'm reacting to it all when i never did before, nerves just feel all amess...i refuse to take something like anxiety medicine in the meantime, cause i was perfectly fine before i've been sick and it's just....those things don't help anything, it's not even like a mask, the side effects are things i already feel, you know?

any opinions though? thoughts? what i should get tested? so much has come back normal, thankfully, but real shocking...with all this going on, i would swear i'd have something like cancer...somebody try to help, thanks to anyone who can

In addition to a food issue, it sounds like an anxiety attack, panic attack, or allergic reaction to me.

[Rpm999]

yeah i'm definately having an allergic reaction to the dye, i haven't had panic attacks since i took nexium awhile back, regardless of how off i feel...anybody have any experience with that dye? waiting on the doctor to call me, i really regret it but i didn't think it would be a risk, forgetting i always suffered with allergies and athsma, on top of possible thyroid issues which could affect it...but hey, i didn't know

like i said though, no matter how screwed up my mental state is and how bad it is every day, this is the first time i've had them since the medicine....so it must be sensitive reactions

[Trillian]

yeah i'm definately having an allergic reaction to the dye, i haven't had panic attacks since i took nexium awhile back, regardless of how off i feel...anybody have any experience with that dye? waiting on the doctor to call me, i really regret it but i didn't think it would be a risk, forgetting i always suffered with allergies and athsma, on top of possible thyroid issues which could affect it...but hey, i didn't know

like i said though, no matter how screwed up my mental state is and how bad it is every day, this is the first time i've had them since the medicine....so it must be sensitive reactions

Have you contacted your doctor? An allergic reaction isn't something to take lightly.

[ravenwoodglass]

Celiac can and does cause the type of mental issues you are dealing with. If your celiac blood work came back positive you can be pretty sure you have an issue with gluten whether you have D or not. Up to 50% of folks with celiac present with constipation and not D sometimes for years. Hopefully the doctor will get back to you soon about the reaction you had to the dye, if you have celiac (which it really sounds like you may have) there may have been something in the contrast that your body is reacting to. I had to have a special oral contrast and was unable to have the injection when I had a CT a while ago because they had nothing that was gluten free and safe to give me. I do hope you will give the diet a try. My family has lived with the mental effects of gluten neurotoxicity for a long, long, long time. It was such a wonder to have those effects lift.

[Rpm999]

thanks for that reply....i'll give it a try for health reasons, but with the past it seems awfully weird....i ate bad and had a bad system for years, i could imagine all the toxins and waste built up that led to this horror show...who knows, time will tell, it's all so complicated

yeah i'm scared with the dye, seriously, i feel so shakey and cold at times that i took a very hot shower and still was freezing, no difference...it isn't my body tempatures, my nerves feel bad, and i just feel like it's a flash back with nexium, all panicy and REALLY off....what do you think they'd do? cleanse me out? with me reacting to medicines weird, what else could they do haha...maybe something like that would find out more/make me feel better with other things....i just hope it didn't cause anything crazy, but it just feels like a brick got thrown on all my already existing symptoms, with a few extras now

[ravenwoodglass]

thanks for that reply....i'll give it a try for health reasons, but with the past it seems awfully weird....i ate bad and had a bad system for years, i could imagine all the toxins and waste built up that led to this horror show...who knows, time will tell, it's all so complicated

yeah i'm scared with the dye, seriously, i feel so shakey and cold at times that i took a very hot shower and still was freezing, no difference...it isn't my body tempatures, my nerves feel bad, and i just feel like it's a flash back with nexium, all panicy and REALLY off....what do you think they'd do? cleanse me out? with me reacting to medicines weird, what else could they do haha...maybe something like that would find out more/make me feel better with other things....i just hope it didn't cause anything crazy, but it just feels like a brick got thrown on all my already existing symptoms, with a few extras now

Did your doctor call you back yet? I could be wrong but I don't think there is anything they can do about the reaction except wait for time to pass it from your body. Treat your body as gently as you can right now, not that you have much of a choice. Go with simple foods, rice (plain), fruits and veggies and get as much fluids as you can. Sleep as much as you can and be patient with yourself until this passes. Let those around you know you are going through a hard time right now and that if you seem off that it is not directed at them.

I do so hope you give the diet a good try. A year from now you may look back on your posts and have a hard time believing you ever felt that bad. Be aware though that when we are effected neurologically by gluten that even small amounts of CC can be enough to have that brain cloud show up again for a bit.

[Rpm999]

he called, but like most doctors, when they don't want to be bothered or give up, make up excuses saying you have anxiety or you're going crazy....gotta love it

but like i've been saying, probably go to the ER...it sounds like anaphylactic because i have a lot of the symptoms...rapid pulse, cold & hot flushes/sensations, crying randomly, real achy and out of it, a little wheezy, a lot of cramping, breathing feels a little harder, nervous....supposedly i look flush and randomly i feel my pant leg or something and it's soaked, even if i have the chills, lots of urination...all those symptoms point to it..plus it even says, food allergies and athsma can put you at a much higher risk which i both have....do you consider it weird that it can last for days? some people say you only can have it that day, but if you're already real sick and having weird system problems, i don't see how it isn't possible, especially with past medicine reactions and very similar symptoms

it's like when i had crazy symptoms with nexium, people said it wasn't possible and that i needed to take anxiety pills, sure enough they were gone when it was all said and done...doctors annoy me so many times, but hopefully they could treat this cause i just feel really off and struggling

[FootballFanatic]

I would try seeing an allergist? That's actually who led me to getting diagnosed (but I got lucky because he has Celiac Disease himself)

But everyone here is right it could be allergies to something else.

But a lot of your symptoms sound like how I was (and kind of still am)

Keep pressing those doctors hard. That's how I got diagnosed in under 10 months.

[Rpm999]

true true, it's been hell though not feeling myself....then it's like this reaction just makes this much worst and i really have no control, even physically, that's how beat and sensitive those 11 months have made my body...it all screws you up, but hopefully this reaction gets better, because it's just REALLY limiting me

aside from that, the doctor i have now is just...jesus, so rude, he really is psychotic...it's bad when a doctor makes you feel intimidated

man, things that effect your nerves though are just bad, from vision to memory all shot...it just sucks at this age cause i've been mostly home, i couldn't work or want to hang with friends much like this....i'll feel much better just when that injection based sickness goes away if so, cause people always say you can't feel any worst but when something else lands on top of it, you really feel it

[Fiddle-Faddle]

THyroid being off can have similar effects to what you describe, too. Low thyroid can make you awfully depressed and teary; high thyroid can make you sweaty and shaky. It is possible for your thyroid to have wild swings back and forth, too (which is definitely not healthy!!!).

Celiac definitely affects thyroid, and there are also several studies indicating that it has a huge neuro effect, too. You can find them pretty easily by googling "celiac and thyroid," "celiac and bipolar," or celiac and neuro," etc.

You are totally right about doctors not wanting to be bothered. Most of the time, they just want to write prescriptions and get you out their door quickly. They don't usually care what the root cause of your problem really is.

I think there is a list of decent doctors somewhere on this site, by city. Maybe your mom can check them out and see if there is one in your area? Or if you live near a reasonably large city, maybe someone here can suggest a celiac-savvy doctor if they live near you?

Good luck~

[ravenwoodglass]

but like i've been saying, probably go to the ER...it sounds like anaphylactic because i have a lot of the symptoms...rapid pulse, cold & hot flushes/sensations, crying randomly, real achy and out of it, a little wheezy, a lot of cramping, breathing feels a little harder, nervous....supposedly i look flush and randomly i feel my pant leg or something and it's soaked, even if i have the chills, lots of urination...all those symptoms point to it..plus it even says, food allergies and athsma can put you at a much higher risk which i both have....do you consider it weird that it can last for days? some people say you only can have it that day, but if you're already real sick and having weird system problems, i don't see how it isn't possible, especially with past medicine reactions and very similar symptoms

If this was an anaphylactic allergy reaction it would be gone now. You sound very much like you are glutened heavily. This does not surprise me if you had barium or other preperations for your test. Barium is loaded with gltuen unless you ask specifically for a gluten free contrast. Gluten free contrast is clear and watery, unless yours was you were glutened. It can take up to 3 weeks for the effects of a heavy gluten load to leave your body. Please tell me you are now gluten free, or that you are starting the diet today. I can't say for sure of course but you sound so much like you could be a member of my family, your presentation is a lot like mine and my sons.

[Rpm999]

If this was an anaphylactic allergy reaction it would be gone now. You sound very much like you are glutened heavily. This does not surprise me if you had barium or other preperations for your test. Barium is loaded with gltuen unless you ask specifically for a gluten free contrast. Gluten free contrast is clear and watery, unless yours was you were glutened. It can take up to 3 weeks for the effects of a heavy gluten load to leave your body. Please tell me you are now gluten free, or that you are starting the diet today. I can't say for sure of course but you sound so much like you could be a member of my family, your presentation is a lot like mine and my sons.

definately true, to both of you!

you know what's weird? i had a barium swallow before and didn't have these problems, but all of the barium came out in my bowels...this time, i literally haven't had any come out of my system and i find that weird and could be effecting this...i mean, it usually comes out right away, so it must have soaked fully in my system...on top of the dye and me already being sick, i'm sure that's a crazy combo....i'm about to go free of gluten, i just have no food at the moment without it really so it'll take a little time to get the family prepared

if that gave me a heavy gluten toxicity and is really screwing my thyroid up, is there anything you recommend to help speed things up? i know no gluten will help obviously, but as far as my thyroid and symptoms, besides the obvious lots of water...i just haven't felt like this once before so i must have really been poisoned...plus, some medicines bother me a LOT so....bad memories

i'm going to the ER soon, just cause i feel worst and i want to make sure nothing crazy got thrown off, which i don't suspect but they recommended it's good just in case...maybe they can test my thyroid level or see what the deal is

[jstoy]

You said you had blood work for alot of different things? My daughter also had blood work and was sick for over 7 years. She just recently had blood work for Celiac and tested positive. She had all the symptoms you have and worst. She was so sick it made me wanna cry at times. I could not help here. Finally once she knew what she had, she did alot of research, ate good food but just different like rice noodles instead of pasta, and many many other food products containing NO WHEAT, within 2 weeks she started feeling better. She is now gluten free and feeling ok. I live in the same house and she is concerned about cross contamination so I do my best not to gluten poison her. Soon I will also be completely gluten free and both our roomates are doing their best to cook in that manner. I hear you have to ask the doctor to give you a specific blood test just for Celiac to find out for sure.

Good luck to you, I am new at all this, but I am sure there are others here with more experience with this disease to help you in many ways to feel better once diagnosed. Good luck

[Naida]

Sounds like you could have a problem with your thyroid. Maybe hyperthyroidism. One of the books I consulted states signs and symptoms "nervousness, short attention span, compulsion to move, Emotional liatility, crying without apparent cause, loss of temper, severe psychotic disturbance. Tremots of hands, tongue , eyelids. Increased pulse, loud heart sounds, difficulty breathing, skin warm and moist, weakness, fatigue, difficulty climbing stairs or maintaining leg in extended position, increased excretions of calcium and phosphorus . Weight loss, because intake less than requirements. Increased frequency of stools (stools less formed. Increased body temperature. Intolerance to heat. You should get your thyroid checked . Also, since there is an association between celiac and thyroid problems, you should also go gluten free.

[kaitethehutt]

Rpm999, I'm telling ya, reading your first entry was like listening to myself talk!!

I completely understand what you're going through right now. I'm about 18 now, but I was like 15 or 16 when I had most of those symptoms, down to the panic attacks, uncomfortable middle, bloated neck, heart palpitations, shortness of breath etc. I thought I was dying everyday, and became a sort of hypochondriac. I was a social wreck; I didn't want to talk to anyone, and found no enthusiasm for going out and doing things because I felt ill. And then when I went to my doctor because I knew something was wrong, she made me feel uncomfortable, seemed skeptical about what I had to say, and then suggested that perhaps I didn't have enough friends in school. WHAT?!!

My grades suffered as well. I've always been a reader, but when the Celiac started to really affect me, I'd literally read a sentence, and then forget what I just read three seconds later. My memories of my early high school years aren't clear at all; it's all a sort of haze. Even today sometimes I have trouble remembering certain things. It's not a disability, but more of an annoyance.

I know how you feel.

But it's SO IMPORTANT that you stay off the gluten! Like, permanently. Never go back to it. I don't care how good that pastrie or sandwich may look: it's not worth it.

Secondly, if I were you (and this might be hard), I'd try to find a doctor who understands Celiac Disease well and could help you out without talking down to you or doubting you, as many have done. Their job is to help you, but you have the final say of which doctor to trust. If you don't like what you hear, don't settle. Go with your instincts: trust yourself. You know you're sick, so find a doctor who understands that.

It may be an allergy, but it sounds to me more or less like symptoms, because I went through the same thing. You're NOT CRAZY; just stick with the gluten free diet (wheat free, by the way, DOESN'T mean gluten free). And definitely find an empathetic doctor. At least, that's my humble opinion. Best of luck to you.

[Guest alliemc]

If this was an anaphylactic allergy reaction it would be gone now. You sound very much like you are glutened heavily. This does not surprise me if you had barium or other preperations for your test. Barium is loaded with gltuen unless you ask specifically for a gluten free contrast. Gluten free contrast is clear and watery, unless yours was you were glutened. It can take up to 3 weeks for the effects of a heavy gluten load to leave your body. Please tell me you are now gluten free, or that you are starting the diet today. I can't say for sure of course but you sound so much like you could be a member of my family, your presentation is a lot like mine and my sons.