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Went To The Gi Doctor Today
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6 posts in this topic

Today I finally got to see the gi specliest.It took around 8 months to ger in .I was there for 3 hrs .I went on the gluten-free diet July 2 and he scedualed my biospy and colon something for sept. 21 .Im really nervus about it .He told me if I had celiac it would show up no matter if I was gluten-free before .I think its going to show neg. becauses I was on the diet previous.For the people who had to do this should I be loading on the gluten right now .Its kinda of hard with school starting .Have any advice im so scared because what if it shows neg. Im so positive its celiac.Any advice or opinions would be greatly appreachiated.thanks Lynds

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If it makes you feel any better, I've had the endoscopy (the tube they insert down your throat), a sigmoidoscopy (a mini-colonoscopy) and a colonoscopy.... and none of them are that bad at all. Now, I'll fore-warn you, the preparation can be a little embarrassing, but it's not too bad. For the tests, they'll drug you up pretty good and you feel like "all is well" during it, so you really won't think it's bad at all... if you can even remember (the drugs sometimes give you amnesia). All the tests were normal for me... but, I don't regret getting them done. As nice as it is to get answers, it's also nice to rule other things out :D

From what I've heard, you should be loading up on the gluten before the test, or your results could be inconclusive. Sounds like a horrible thing to do, though.

Good luck with your tests. Keep us updated on how things are going for you ok?

Gretchen

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Ya I heard about the preperation .The problem is i have a 2 hrs drive to the hospital :( .which kind of worrys me because of the laxitives .They are gonig to put me to sleep and while im asleep there going to take my blood because I dont like needles .You are right it is good to rule somethings out i just hope they get to the bottem of it . thanks I will keep u updated .

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Oh no... they shouldn't let you drive yourself. Normally they won't let you do the procedure unless someone drives you home... you might want to double check this with your doctor's office, though. Or were you just referring to the time to drive there, period? Usually by the time you're going to the hospital or office, the prep is pretty much completed... but, just in case, prepare to stop at a rest area.

I know.. . it's nice to get an answer to what's making your body react the way it does.

PS... I hate needles too! eewwwww! I haven't fainted yet, but I get close.

Gretchen

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Oh no lol I cant even drive yet .I was talking about the time becauses we have to go on a highway which means no rest rooms...for awhile

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Hey lyndszai.

Have you seen the posts about enterolab.com in here? They do testing for celiac, and are supposed to be more accurate than the blood and biopsy are. And they can test you when you've been gluten-free for awhile.

The only problem you might have, is that I don't think medical insurance covers their testing, and your doctor may not accept their results.

What you do basically, is order the tests you want from their website, they mail them to you, then you give them a stool sample, send it back, and your results get emailed to you. Not too painful, lol.

My point though is if you are scared that nothing will show up since you've been gluten free, you could get tested by them too. That's what I did, just to be safe, incase my biopsy was negative, which it was, bleck.

Not trying to advertise though, just letting you know about another option aviable. =)

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    • I agree, it's very unlikely she doesn't have celiac disease.  Can you find a local celiac group to get a doctor recommendation from?  They might have the best idea of a local doctor who is familiar with celiac disease.  There is also a doctors sub-section of this forum which might help find one.  http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/
    • Hi I'm newly diagnosed with coeliacs only 5 days ago so I have had 4 days gluten free , I felt more energised pretty quick but today have gone back to that sluggish feeling lethargic, could this be a withdrawal effect also did anyone have swelling whilst on gluten ?
    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
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