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Egd....don't Want It~!

chgomom

By chgomom
in Coping with Celiac Disease

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chgomom Enthusiast
chgomom
Posted

Came back....way off the chart....IGA, TTG

Then my B's were low.....my minerals like zinc were off....my A, Mag, potass, and calcium were the very last number in normal and mag was one poiny under normal.

I have osteopenia in my hips, and osteoporosis in my spine and shes certatin other areas.

Why have I not been started on vitamins....and why are they pushing this stupid EGD....she said she has no doubt in her mind that its Celiac but they have to do an EGD.

I don't agree, it doesn't feel right and it scares the bejeezus out of me. I don't want it done.

I also don't see why....if the ER staff....said...absolutely no gluten....and per her review of their notes...she thinks I am part of a sub group that gets violently ill when gluten is introduced....

WHY....WHY do I have to have the EGD.

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chgomom Enthusiast
chgomom
Posted
  • Author

This seems so archaic to me....

If 5 doctors say...absolutely minus the biopsy, this is what you have. You have to maintain a strict gluten free diet or you could really hurt yourself....why.

Michi8 Contributor
Michi8
Posted

Perhaps your doctor is wanting to rule out any other GI issues in addition to your having celiac disease? You need to ask your doctor for clarification.

Michelle

chgomom Enthusiast
chgomom
Posted
  • Author

Well....she said on the phone she is confident based on my numerous CT's Er visits, and past med history there is nothing else going on and that shes using it as a baseline, incase I have to have something done later, there is something to compare progress or progression on...

Michi8 Contributor
Michi8
Posted
Well....she said on the phone she is confident based on my numerous CT's Er visits, and past med history there is nothing else going on and that shes using it as a baseline, incase I have to have something done later, there is something to compare progress or progression on...

I suppose that would be a valid reason for wanting to do it, but can she not track your progress and diet compliance with the blood tests instead? If you really don't want to do it, then she can't make you. :) I would do some research to back up your desire for not doing the EGD and discuss it thoroughly with her...if you can suggest other valid methods of tracking progress, then you may be able to change her mind.

Michelle

tarnalberry Community Regular
tarnalberry
Posted

and, given your history, there may well be value in having a baseline. she may be confident that this is what is going on, but wants to be able to - if you don't respond well or quickly - to be able to examine other possibilities effectively. if she has a baseline, that may well help her, since once you start making changes, it may become more difficult to make accurate comparisons. it sucks. and next time, make sure to ask her these questions (all of 'em - why do this if you know what it is? why aren't I starting vitamins? etc.) at first. you did the right thing calling back and asking. :)

chrissy Collaborator
chrissy
Posted

if it helps, i'm having a scope done on the 30th of this month----and i don't have celiac. (i'm sure that doesn't help, but at least you know your not the only one having a scope soon!)

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Guest nini
Guest nini
Posted

my dr. told me that with my blood test results being off the chart I did not need the biopsy, so I don't know why she is pushing it on you. I would call back and ask to speak with her and make it clear that you don't want it, so you need an extremely valid reason (that sits well with you) as to why you should have it done. You know you need to be on the diet and taking vitamins and compliance to the diet can be measured with blood tests, in my humble opinion she's got to have a really compelling reason for you to go through with this and if she doesn't, then don't!

chgomom Enthusiast
chgomom
Posted
  • Author

Well thats how I feel. I just don't get it.....

It makes no sense.....I mean....they usually do it along with a colonoscopy to check both ends so to speak.

But she said I did'nt need that based on everything she;s seen. She said its just to have a baseline.

I'm not sure a base line is valid for me.

I don't know....I don't want to seem difficult....

Guest nini
Guest nini
Posted
Well thats how I feel. I just don't get it.....

It makes no sense.....I mean....they usually do it along with a colonoscopy to check both ends so to speak.

But she said I did'nt need that based on everything she;s seen. She said its just to have a baseline.

I'm not sure a base line is valid for me.

I don't know....I don't want to seem difficult....

it's your body and she can't force you to do anything you don't want to do, and if you don't feel comfortable with it, that is good enough reason not to do it, you already KNOW that it's Celiac based on your blood test results, so it's not like you need further confirmation. A base line is not a valid reason to undergo any invasive procedure. And it is invasive. Just me but I wouldn't do it.

chgomom Enthusiast
chgomom
Posted
  • Author

Mean on every test shes done she put the dx code as celiac disease....not something no nspecific....

so she is already coding it officially as celiac disease and she said the oeteoporosis and penia...were further confirmation.

Anybody thats had one....did you have a bad experience?

Anyone that hasn't......why not...and how has your treatment gone since then....any push back from docs?

chgomom Enthusiast
chgomom
Posted
  • Author

So anyone that has not had one......what did your docs say?

Anyone that has had one...was it beneficial...and how did it impact your treatment?

Nooner Newbie
Nooner
Posted

I said no to the biopsy. Actually it was Heck No. Actually it was... well, I shouldn't use that language here. Anyhow, I shopped around until I found a doctor who would treat me based on my Enterolab results and dietary response with no biopsy. Try calling the celiac support group leaders in your area for a referral, it worked for me.

My personal opinion is that the biopsy is surgery, surgery is bad, I don't do surgery. But that's me. :rolleyes:

It's your body, and only you can decide to let them do the biopsy or not. If you don't want to do it, stick to your guns. If you do decide to do it, make sure it's for a reason that makes sense to you. Don't worry about being "difficult" to others. Just worry about being "difficult" to yourself!

~Li

Guest nini
Guest nini
Posted
So anyone that has not had one......what did your docs say?

Anyone that has had one...was it beneficial...and how did it impact your treatment?

well, since my dr. said I didn't need one it hasn't been an issue. I do all my follow up monitoring with my primary care provider because as long as I stick to the gluten-free diet I'm doing well. I know that gluten is the problem...

almostnrn Explorer
almostnrn
Posted
Mean on every test shes done she put the dx code as celiac disease....not something no nspecific....

so she is already coding it officially as celiac disease and she said the oeteoporosis and penia...were further confirmation.

Anybody thats had one....did you have a bad experience?

Anyone that hasn't......why not...and how has your treatment gone since then....any push back from docs?

I had the EGD done in July of this year. I had already had the dx of DH but my doctor wanted to do a biopsy just to make sure and to take a look at my small intestine. The test itself wasn't horrible, I was so drugged I remember very little of it BUT it was the regular diet that did me in. After 6 weeks I was in horrible shape and I kind of feel like I lost my whole summer. That is something to take into consideration for you and your MD....unless they feel as if they are looking for something else. I'm not sure if I would do it again if I had it to do over but I will say it was reassuring that celiac was the only thing going on in there. Good luck!

Terch Apprentice
Terch
Posted

Hi,

I had one and it was a breeze. It really was easy since they give you something so that you don't really remember the procedure. I didn't even have a sore throat or anything. afterwards and actually had a good sleep in the afternoo which I haven't done in a long time. In all seriousness I am a big chicken and cried after my upper GI barrium swallow because I thought I was going to barf in a public place. I am such a suck that I get the shakes just having my teeth cleaned at the dentist's office and I made out fine with the egd so I am sure that you will too if you decide to do it. I am glad that I did just so that they could really see what was going with my stomach and this way I won't worry that I have something more sinister going on. Anyway, had another barrium today to see if I might have Crohn's... will find out in 4 weeks time.

Good luck with whatever you decide to do.

I had the EGD done in July of this year. I had already had the dx of DH but my doctor wanted to do a biopsy just to make sure and to take a look at my small intestine. The test itself wasn't horrible, I was so drugged I remember very little of it BUT it was the regular diet that did me in. After 6 weeks I was in horrible shape and I kind of feel like I lost my whole summer. That is something to take into consideration for you and your MD....unless they feel as if they are looking for something else. I'm not sure if I would do it again if I had it to do over but I will say it was reassuring that celiac was the only thing going on in there. Good luck!
chgomom Enthusiast
chgomom
Posted
  • Author

Well.....I guess its the whole putting something where it doesn't belong fear....

but if it were something worse or there were prolems down the line (since she just wants a baseline),

because based on everything she said you have celiac, I have no doubt in my mind.

I just see that its to further diagnose, because it can't disprove.

Ugh, I don't know.

I do like hearing how everyone made their decision though on whether or not to have the biopsy.

And my last appt with her was th 12th....

The EGD is supposed to be the 27th.

She said no challange because that would be more harmful than good, and its already proven in every aspect of my medical history whats going on. That she just wants a base line....

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