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Is Okay To Self Diagnose?

freeme808

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GottaSki Mentor
GottaSki
Posted

OK, moving over for Lieesur.  Geez Leesur, slow down a little some days! :)

 

Hi Freeme,

 

For what it's worth, I think it makes sense to go ahead and do the endoscopy, since you have it available.  Sometimes it can take months to get one scheduled.  GI doctors tend to be very busy for some strange reason.  And at least that way you won't be head scratchin' all summer during the to weather.

 

Nope...no slowing me down -- well unless you put me in the sunshine....

 

I agree with Paul -- getting a look is a good idea -- IMO :)

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IrishHeart Veteran
IrishHeart
Posted

well, I'l make it a threesome :D  and concur... 

 

An endo looksee and biopsy perhaps, IMHO

freeme808 Apprentice
freeme808
Posted
  • Author

Lol, you guys are cracking me up! :D Which is good, cause I was just feeling really stressed! Im waiting for my doc(PCP) to call me back, so I can talk to him about getting that referral that he mentioned about seeing the GI doc. I don't know if the GI is just going to hand over an endoscopy/biopsy though...I am kinda hoping that my PCP will just order one! We'll see. Im going to update him on everything- and tell him that I want to get my intestines checked out. For my piece of mind, especially because this is a lifelong change...I want to make sure everything is okay in there...Hell, if it comes back normal, Im going to be SO excited! Like a weight has been lifted, even though I know I still can't consume gluten. And if its bad, then Im going to give myself a pat on the back for pushing to find out and confirm something that I highly suspected and for not giving up. 

I almost wasn't going to do it(why I was stressed), but in my heart, and of course for my health, I KNOW I just gotta do this! Im such a passive person, too passive actually, and it's hard for me to speak up and be the squeaky wheel. Lol. Im the quiet, reserved person in the back of the room-although, if I know ya, you can't shut me up! :rolleyes:  

I'll keep ya'll updated! The fact that you guys are still here responding, really has made a difference for me!  :wub:

IrishHeart Veteran
IrishHeart
Posted

We're on your side. We want you to find answers and we want you to stop feeling lousy and get better.

 

 

 

but, mostly we want you to get better and invite us over for a party.

:D

 

 

 

 

P.S. As you can tell, I am NOT the quiet reserved person at the back of the room (although when I was very ill before my DX,

I did not speak much at all. I became very quiet and that's how my hubs knew something was very, very wrong)  :(

freeme808 Apprentice
freeme808
Posted
  • Author

IrishHeart, what kind of testing did you go through? Did you have positive blood work, and then they did the endoscopy? 

 

Im getting nervous about talking to my doctor. Im suppose to be following up with him about my enlarged kidney, and then I wanted to ask him about seeing the GI doctor to help me better figure out what is going on in there. I figured I could tell him about how I went gluten-free in Feb for about a month and a half and started feeling SO much better. Then messing up, and being back on gluten for over two months now...and how all my symptoms came back and worse.

Ugh, I wish I didn't worry so much! 

 

 

Also, I've been gluten-free for two days now...I feel horrible! 

If he does refer me, should I keep eating gluten for proper testing? I figured I'd go back to eating gluten if he does, because this is my last shot at this. Then after all the testing I can go through my withdrawals  ;) and begin my recovery.

freeme808 Apprentice
freeme808
Posted
  • Author

:unsure:

IrishHeart Veteran
IrishHeart
Posted

Hon, you have to be consuming gluten for the celiac panel to be valid. Stay on it for testing. 

 

 

 

You can't go by my experience because I am an unusual case. My blood panel was negative (which happens sometimes) and I went undiagnosed

for a long time as a result.

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powerofpositivethinking Community Regular
powerofpositivethinking
Posted

keep on glutening yourself until ALL testing is complete  :)

 

If he does refer me, should I keep eating gluten for proper testing? I figured I'd go back to eating gluten if he does, because this is my last shot at this. 

 

sounds like me too  :P   

 

Im the quiet, reserved person in the back of the room-although, if I know ya, you can't shut me up! :rolleyes:  

 

freeme808 Apprentice
freeme808
Posted
  • Author

Okay, thank you! 

IrishHeart Veteran
IrishHeart
Posted

from the Univ. of Chicago Celiac Center FAQ section:  

Why do you insist I eat gluten for a diagnosis when I feel better on a gluten-free diet?

Five reasons exist as to why someone might feel better on a gluten-free diet. It’s crucial to understand which of the five is the cause in order to implement a safe dietary program.

  1. Celiac disease
  2. Non-celiac gluten sensitivity
  3. Wheat allergy
  4. Sensitivity to foods rich in FODMAP (fermentable oligosaccharides, disaccharides, monosaccharides and polyols); wheat grains are rich in FODMAPs and those sensitive to them have reported marked improvement
  5. Placebo effect (quite common in adults)

It’s unwise to maintain a gluten-free diet without diagnosing a specific health concern, as the above conditions differ profoundly in mechanisms, severity of damage, and complications. If already eating gluten free there’s no way to establish a diagnosis other than Open Original Shared Link. Plus, autoimmune diseases tend to cluster together in one individual and celiac disease is an inherited disease, so we believe it wise to understand the health risks for your other family members.

 

also:

 

Open Original Shared Link

freeme808 Apprentice
freeme808
Posted
  • Author

My doctor was awesome, and listened to all of my concerns and is referring me. I believe I'll be getting an endoscopy and colonoscopy. Which is good so I can rule out other things as well. Im so looking forward to the results, and hoping everything is okay in there. It'll really give me a piece of mind. Cause I already know that if I don't have Celiac, then that means it's NCGI, but I will FINALLY know! :)  :)  :)

So, the kicker which we just discussed, now I know I gotta keep eating gluten until the testing is over(not sure if it'll take another month or so). Hubby will be bummed, that I still have to poison myself cause he knows how sick I get, but Im sure he won't mind once I start making some of the dinners that he loves! :wub:  Emotionally Im feeling so much better though, like this is it! I'll finally have a peaceful mind after this. So I can finally move on with my GFDFSF diet. LOL, sheesh...seems high maintenance when I spell it out.  

 

YAY! Thank you guys for being there...and for giving me the courage! 

IrishHeart Veteran
IrishHeart
Posted

It's not really all that "high maintenance" I assure you. i did it for a year and I added dairy back and now, soy lecithin and soybean oil do not bother me one bit.

 

And you may not even need to be DF and SF after you start to heal (I am a prime example).Lactose intolerance is secondary in celiac.

Once the villi heal, lactase is produced once more in the tips of the villi and you will be able to tolerate it again.

 

Just get it figured out and we'll be here for you.

 

And try not to worry too much...just go with it. 

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

great news!!!!  make sure they take at least 6 samples from your small intestines.  the more the better  :)

My doctor was awesome, and listened to all of my concerns and is referring me. I believe I'll be getting an endoscopy and colonoscopy. Which is good so I can rule out other things as well. Im so looking forward to the results, and hoping everything is okay in there. It'll really give me a piece of mind. Cause I already know that if I don't have Celiac, then that means it's NCGI, but I will FINALLY know! :)  :)  :)

So, the kicker which we just discussed, now I know I gotta keep eating gluten until the testing is over(not sure if it'll take another month or so). Hubby will be bummed, that I still have to poison myself cause he knows how sick I get, but Im sure he won't mind once I start making some of the dinners that he loves! :wub:  Emotionally Im feeling so much better though, like this is it! I'll finally have a peaceful mind after this. So I can finally move on with my GFDFSF diet. LOL, sheesh...seems high maintenance when I spell it out.  

 

YAY! Thank you guys for being there...and for giving me the courage! 

freeme808 Apprentice
freeme808
Posted
  • Author

Boy oh boy, I guess I have an appointment in 4 weeks, and it's only a consult.  :mellow: I have to remain glutened until then. Oh lord, I don't want to put anymore weight! Im trying to make sure I keep active, and know that this is worth it because Im finally going to, well hopefully get the answers Im looking for. Lol, if for some reason, just saying, that the doc doesn't want to do an endoscopy...Im going to be SO MAD! :angry:  But that's jumping the gun, and I have a good feeling about this.  ;)

But, another 4 weeks!? :unsure: I guess it's also good cause that would put me at 3 and half months back on gluten. And I only went gluten-free for half of that time...so if there's damage, it should show? I just want to find out why my intestines are so rock hard in there. I haven't been able to lay comfortably on my tummy for years...I always feel too much pressure there when I try.

  • 1 month later...
freeme808 Apprentice
freeme808
Posted
  • Author

I gotta thank you guys again!!! For keeping me sane and letting me know Im not the only one that's had to go through all this craziness! The GI was  pretty cool, has years of experience, and used to diagnosing Celiac a lot. He is doing the endoscopy-biopsy of duodenum, and colonoscopy-biopsy of the ileum. Now, after a couple months of impatiently waiting, and shoving everything gluten into my mouth possible, and drinking lots of my fav beer, lol....I feel confident for the procedures. Im SO happy now that I can finally go gluten-free without looking back. :D I know I probably won't have the results for a while, but I will update with them. Then I can hopefully stop flooding this area of the forum with all the what if's? ;) And start swappin' recipes! 

Thank you guys!!

xoxo

GottaSki Mentor
GottaSki
Posted

I gotta thank you guys again!!! For keeping me sane and letting me know Im not the only one that's had to go through all this craziness! The GI was  pretty cool, has years of experience, and used to diagnosing Celiac a lot. He is doing the endoscopy-biopsy of duodenum, and colonoscopy-biopsy of the ileum. Now, after a couple months of impatiently waiting, and shoving everything gluten into my mouth possible, and drinking lots of my fav beer, lol....I feel confident for the procedures. Im SO happy now that I can finally go gluten-free without looking back. :D I know I probably won't have the results for a while, but I will update with them. Then I can hopefully stop flooding this area of the forum with all the what if's? ;) And start swappin' recipes! 

Thank you guys!!

xoxo

 

Always great to hear there is light at the end of the frustrating diagnosis tunnel.

 

Do let us know when the endo is complete so we can all cheers!!! to your new gluten free life :)

AlwaysLearning Collaborator
AlwaysLearning
Posted

In the U.S., if you don't have health insurance through an employer, you can expect to pay higher health insurance rates with a celiac diagnosis.

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