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Endoscopy Question

janiney08

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janiney08 Apprentice
janiney08
Posted

hi all, my bloodwork came back positive for celiac twice now, my gastro says he is 97% sure but the "golden standard" of diagnosis is through an endoscopy, gluten doesn't make me feel sick right away, I apparently do not absorb iron though, but between by blood work coming back positive and my one liver enzyme elevated he said it all fits, I guess I am going to do it so I know for sure. Because I do not get physical symptoms, and I need to eat gluten for the test, I am doing a last gluten hurrah and only eating certain things the last few weeks that I know I will miss (beer, pizza, ice cream cones!). Anyway my question is, the endoscopy seems like no big deal, my gastro is awesome and explained everything, just looking to confirm that I have nothing to be freaked out about! and if my biopsy comes back negative for some reason I have no idea what it could be. trying not to think about that though.

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BLM44 Newbie
BLM44
Posted

I'm in the exact same position.  My endo is scheduled for 7/9.  My doctor told me that if he didn't tell me he was doing the endo, I'd never know.  I'm not worried.  And he said that he is convinced I have celiac disease b/c my blood test results were so high.  I'm not experiencing any gastro symptoms, although the last couple months I feel fuller sooner when eating and I'm not super hungry all the time. Depending on what I eat, I do get gas.  :)  Three weeks left of the "goodies" for me. 

nvsmom Community Regular
nvsmom
Posted

The biopsy is usually pretty smooth sailing. Most people around here had no problem at all beyond a slightly irritated throat - I've heard it's a good excuse for popsicles.  ;).  Your intestines do not have any nerves that would detect pain from the biopsy so you should have no intestinal discomfort.  Some people feel a little off from the anesthetic, but I wouldn't worry unless you've had problems with it in the past.

 

Be aware that false negatives do occur in the biopsy. There are a number of people who have had negative biopsies yet positive blood work and then a positive response to the gluten-free diet.  False negative biopsies are the minority but they are not at all rare.  I have seen stats that around 20% of celiacs have a false negative biopsy; that's 1 in every 5! I am not sure if the stat is actually that high (I can't find my info) but I am pretty sure that it is at least 10%.

 

Just remember that a positive is a positive. As far as I know, only the tTG can be (weakly) falsely positive about 5% of the time, and in those cases it is caused by thyroiditis, diabetes, liver disease, severe infection, crohn's or colitis.  The DGP and EMA tests are almost foolproof if you had a positive, and multiple positive tests is a sure thing. You have celiac disease.  The biopsy is just so the doctor can "see" the damage (and make a few bucks  LOL ;) ).  Regardless of the endoscopy result, you will need to go gluten-free once it's done.... I know it's not great, but once you get used to it, it is just a minor inconvenience - you'll get there in the end and be okay.  I'm sure of it.  :)

 

To ensure you get as accurate biopsy as possible, request 6 or more (8+ is better) biopsy samples be taken. Celiac damage can be spotty so increased sampling gives them a better chance of catching it.

 

Have fun with your last hurrah.  Eat a big gooey cinnamon bun for me.  ;)

BLM44 Newbie
BLM44
Posted

nvsmom -Thanks for the reply about the samples.  That is something I did not know.  And I don't think the doc mentioned it!  janiney08 - when is your endo scheduled for? Please come back and share your results and I'll do the same! 

janiney08 Apprentice
janiney08
Posted
  • Author

thanks for all the info and support! I did start the gluten free diet the end of April when my blood results came back positive. it was hard at first but I think I got the hang of it, its been hard going back to eating gluten again. I realize how much better I feel off of it already. My doctor explained that he takes a bunch from different areas for that reason so hopefully he'll find what he is looking for.

I will totally have a big gooey cinnamon bun for you before July 3!

janiney08 Apprentice
janiney08
Posted
  • Author

@BLM44

I will totally share my results! July 3rd!

  • 3 weeks later...
janiney08 Apprentice
janiney08
Posted
  • Author

hi all, so went for my endoscopy on July 3! it wasn't so bad but I did enjoy the foods I wanted before my test! Talking to the anesthesiologist before my test she informed me that she has seen on a lot of occasions that the doctor might be able to tell just from looking if you have celiac, even though he will take numerous biopsies. Sure enough after the test my doctor said my intestines were textbook for celiac, very flat and scalloped around the edges. He recommended gluten free and I will go back in 2 months for more bloodwork. He said that my intestines should heal up in about 3 to 6 months and that I might not ever have to take iron supplements again after that. I'm glad I went for it and I know for sure now especially before I want to start think about having a baby. When I go back for my follow up my doctor said he will also have pictures of my intestines for me...goodie! lol   

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bluewhitesky Rookie
bluewhitesky
Posted

hi all, so went for my endoscopy on July 3! it wasn't so bad but I did enjoy the foods I wanted before my test! Talking to the anesthesiologist before my test she informed me that she has seen on a lot of occasions that the doctor might be able to tell just from looking if you have celiac, even though he will take numerous biopsies. Sure enough after the test my doctor said my intestines were textbook for celiac, very flat and scalloped around the edges. He recommended gluten free and I will go back in 2 months for more bloodwork. He said that my intestines should heal up in about 3 to 6 months and that I might not ever have to take iron supplements again after that. I'm glad I went for it and I know for sure now especially before I want to start think about having a baby. When I go back for my follow up my doctor said he will also have pictures of my intestines for me...goodie! lol   

Glad you got a definitive answer from the endoscopy!

janiney08 Apprentice
janiney08
Posted
  • Author

Thanks me too!

BLM44 Newbie
BLM44
Posted

I go tomorrow morning @7 for my Endo.  If I'm positive, I'm hoping for quick feedback like you received.  Although, with my high positive blood tests, I plan on going gluten-free anyway.  (I'm enjoying a cupcake as I type this.) :D

janiney08 Apprentice
janiney08
Posted
  • Author

Yep, my blood result were very high twice so they might be able to see it right away! I feel better and this is my 6th day officially gluten free! No turning back! (it is never too early for a cupcake, and I have had very good gluten free ones too! :P)

SMRI Collaborator
SMRI
Posted

I was a little apprehensive about my endoscope because I usually take a long time to wake up from anesthesia.  It was a piece of cake compared to other surgeries I have had and I don't remember a thing.  I got fast results too so that was nice!

BLM44 Newbie
BLM44
Posted

My endo went very well.  I was out before they finished strapping the mouth guard on.

 

Unfortunately, the night before I didn't get any sleep b/c I was catching a cold and my left sinus under my eye was blocked, causing my ear & teeth to hurt all night long and I couldn't really take any meds, except tylenol b/c of the procedure. Add to that very restless legs and I didn't get any sleep. The Endo was very smooth.  My doctor said that he saw inflammation in my duodenum and said "it looks like the real McCoy"....meaning celiac.  Of course, it takes about 10 days for the results, but he told me to start a gluten-free diet right away.  Which will be tomorrow, since my mom came down from PA to "baby" me and she made my favorite - homemade PA Dutch potpie (or chicken & dumplings, as most people know it), where the dough is homemade and you roll it out and cut it into squares.  If you've ever had chicken & dumplings pre-gluten-free days at Cracker Barrel, theirs is very similar.  It was to be my last gluten filled meal, except we made so much I'm having it leftover tonight. :)  So I'll start gluten-free on Friday.  I'll have to experiment with other flours to see what makes the best dough for this meal.

 

I slept a good bit yesterday, but that was only partially due to the anesthesia.  The rest was no sleep the night before and one incredibly fast moving cold.  Today I'm coughing up a storm and have every symptom on the Nyquil bottle. 

 

I'll report back after I'm gluten-free for about a week and when I get the biopsy actual results.

 

Thanks all for your input and sharing your experiences.  This is all so new to me and I appreciate the information!

janiney08 Apprentice
janiney08
Posted
  • Author

I was thinking about you!! Sorry to hear you sick, but glad to hear your endo went well! Just got my biopsy results yesterday and it's for real too! There is a chicken and dumpling recipe my mom makes that calls for bisquick dumplings, I know they have gluten free bisquick so maybe that is an option! If you want the recipe let me know! Hang in!

BLM44 Newbie
BLM44
Posted

My doctor just put up my biopsy results.  They were positive for Celiac.  No big surprise, as I was expecting it.  I'm on Day 3 of going Gluten Free.  My first trip the grocery store on Sunday was a little .........daunting, to say the least.  But I did a walk through of a local health good store and felt much better about my "choices".  Thank you everyone for your input!

janiney08 Apprentice
janiney08
Posted
  • Author

Good to hear! It better that it's something manageable! I was relieved after hearing it confirmed. After my blood work came back positive early in the summer my first trip to shoprite was daunting too. With the help of family and some gluten free friends it has been getting easier for me. I am trying to eat more whole foods and only using processed for convenience. I'll always have Perdue gluten free chicken patties and corn tortillas in my house at all times.  I also found a recipe for breadcrumbs using gluten free rice krispies, been using it in meatloaf and home made burgers! You can find such great stuff on pinterest!  

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