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Sick For Years And Trying To Figure It Out, Its Gotta Be This

29wilds

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29wilds Newbie
29wilds
Posted

Ive been so sick for a couple years now and can't work, can barely take the dogs for a walk sometimes and the doctors tell me that all my testing comes back OK! Within the last 5 months my nose runs when I eat and I use to drink beer but all of a sudden can't take it any more. I put it all together and did my research and it all seems to fit. I don't get diarrea but I do have hypothyroid problems, I can't stay awake after some meals and its so bizzare that people think I'm loosing my mind. I feel like I'm being drugged when I eat. I either can't stay awake or I feel so sick its like I took poison or something. I don't know what to eat or not to eat but I'm getting a notion that if this is what it is I know what to do I think but the blood testing has came back normal for celiac spru two times in 2 years. I hear from everyone here that a lot of false negatives happen and I'm in the process of getting another upper endoscopy arranged so they can check it all out and at least make sure I don't have cancer or something because I feel like I"m dying most of the time and I can only lay here and suffer. The only thing I think I can do is make the doc take a biopsy to confirm or deny this, and then proceed with a big change in diet but I'm so sick I can't wait. I've tried some pancreatin enzymes to see if it will help and surprisingly it really did. Its the only thing so far thats helped at all with how I feel except trying not to eat bread and such. I also have a very bad burning pain in my back like its a pancreas problem and its been getting worse the last 2 months. I also have had burning pains in my legs recently along with massive headaches, my ears are ringing, and I'm so tired all time just like everyone else. I've gotten so cold while outside its like being in -20 below zero my fingers hurt like they were frozen!! I don't know who to talk to because everyone I know thinks I've lost it already since all testing comes back ok. I know theres something very wrong here and I can feel it all over my gut, my kidneys, my legs etc. Im glad I found this site because it tells me I'm not loosing it and there are people like me out there. I just hope that I can get a scope done on me to take this biopsy to get the real diagnosis. I do have an appointment with an allergist next week and from her receptionist it didn't sound like they know what I'm talking about so here we go again. I know that everyone here has had major trouble but I'm close to loosing my mind because nobody understands me so I hope someone can tell me I"m like you are and what i'm doing is the right thing. I don't really know how much longer I can hold my sanity and if I can't what should I do. I don't have any family to rely on and all the quacks I've talked to about depression only care about the money. I hope if you read this you can give me some adivice or anything to help me out, I'd really appreciate it.

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ShayFL Enthusiast
ShayFL
Posted

Even if you dont get an official Dx, it will not hurt to try a gluten-free diet. It is healthy. And the proof would be in the eating. :)

Also consider the SCD (Specific Carbohydrate Diet) as it sounds like it fits you.

Wishing you well!

TracyB Apprentice
TracyB
Posted
Ive been so sick for a couple years now and can't work, can barely take the dogs for a walk sometimes and the doctors tell me that all my testing comes back OK! Within the last 5 months my nose runs when I eat and I use to drink beer but all of a sudden can't take it any more. I put it all together and did my research and it all seems to fit. I don't get diarrea but I do have hypothyroid problems, I can't stay awake after some meals and its so bizzare that people think I'm loosing my mind. I feel like I'm being drugged when I eat. I either can't stay awake or I feel so sick its like I took poison or something. I don't know what to eat or not to eat but I'm getting a notion that if this is what it is I know what to do I think but the blood testing has came back normal for celiac spru two times in 2 years. I hear from everyone here that a lot of false negatives happen and I'm in the process of getting another upper endoscopy arranged so they can check it all out and at least make sure I don't have cancer or something because I feel like I"m dying most of the time and I can only lay here and suffer. The only thing I think I can do is make the doc take a biopsy to confirm or deny this, and then proceed with a big change in diet but I'm so sick I can't wait. I've tried some pancreatin enzymes to see if it will help and surprisingly it really did. Its the only thing so far thats helped at all with how I feel except trying not to eat bread and such. I also have a very bad burning pain in my back like its a pancreas problem and its been getting worse the last 2 months. I also have had burning pains in my legs recently along with massive headaches, my ears are ringing, and I'm so tired all time just like everyone else. I've gotten so cold while outside its like being in -20 below zero my fingers hurt like they were frozen!! I don't know who to talk to because everyone I know thinks I've lost it already since all testing comes back ok. I know theres something very wrong here and I can feel it all over my gut, my kidneys, my legs etc. Im glad I found this site because it tells me I'm not loosing it and there are people like me out there. I just hope that I can get a scope done on me to take this biopsy to get the real diagnosis. I do have an appointment with an allergist next week and from her receptionist it didn't sound like they know what I'm talking about so here we go again. I know that everyone here has had major trouble but I'm close to loosing my mind because nobody understands me so I hope someone can tell me I"m like you are and what i'm doing is the right thing. I don't really know how much longer I can hold my sanity and if I can't what should I do. I don't have any family to rely on and all the quacks I've talked to about depression only care about the money. I hope if you read this you can give me some adivice or anything to help me out, I'd really appreciate it.

I agree with ShayFL - it sounds like the doctors are doing things for you but not hitting the target yet. After the biopsy you may want to go gluten-free as you have nothing to lose. Good luck to you and I hope you find out what's going on - some of your symptoms sound like Fibromyalgia - I work with somebody who had similar to you and she couldn't get out of bed anymore and has 2 kids. She went to a Herbalist and she swears it cured her - she calls all doctors quacks now! It's just a thought - you never know...

TracyB

ShayFL - if you're reading this - my DD's name is Shae! She's just turned 3 - lovely name!

Nancym Enthusiast
Nancym
Posted

Are you getting proper treatment for the hypothyroid? That sure can make you feel miserable if you don't get it treated properly.

Here's a good site to read up on that: Open Original Shared Link

But yeah, it takes an average of 11 years to get a celiac diagnosis. If you want to get on with it, just try out the diet and forget about all the doctors, see if you can't manage to make yourself better.

ShayFL Enthusiast
ShayFL
Posted

Shae is very pretty. :) My legal name is Sharon but my family all call me Shay.

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