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Confused And Alittle Nervous About Biopsy

jewlesD

By jewlesD
in Coping with Celiac Disease

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jewlesD Apprentice
jewlesD
Posted

Hello all,

I have a question..I have been gluten free for about 3 months now, and feeling pretty good for the most part ( you all know after 3 months "learning experiences" can happen that tend to be unpleasant) anyways, I saw a GI doctor about 2 weeks ago who happens to also have celiac...kind of convenient. Anyways, I went to see a GI doctor b/c I need to know for sure if I have celiac ( blood test were inconclusive) and b/c while I do feel better I still get stomach issue and d although it is less frequent..also I have really high levels of billirubin. ANYWAYS, my question is, since I have been gluten free for 3 months they seem to think the biopsy I am having done in 3 weeks will not be accurate since I have been gluten free, SOO they told me to start eating gluten again...I dont think I can. I have been hospitalized 4 times this past summer for severe sickness, and when I do accidentally eat gluten I get really sick ( you all can relate) I just cannot see putting myself through this AGAIN for 3 week. I need to find out if its my gallbladder and or pancreas causing all the trouble or something else, and they are biopsying pretty much everything that can cause stomach issues. did any of you have to do the same thing and how the heck did you manage it...I have a full time job with mental health clients who relay on me to be there, but when my stomach acts up its really bad...any suggestion would be appreciated. Also, does the biopsy hurt and how long recovery time? thanks so much,

Jewles

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*lee-lee* Enthusiast
*lee-lee*
Posted

i had the biopsy a few months ago and i was very nervous. i'd never been sedated or even gone to the hospital before. but it was a piece of cake! they give you an IV with meds that put you to sleep. right before i was knocked out, they inserted a bite plate in my mouth so they could slide the scope down. that is the last thing i remembered. the next thing i knew, i was in recovery and the nurses were urging me to get up. i could have slept for hours but they wanted me out of there! i was groggy for a few hours afterward and my throat was a little scratchy the next morning but that was it.

is there a specific reason why you need to find out if you have Celiac or do you just want to know for your own peace of mind? you might want to consider simply continuing with the diet if you've had a positive response. if i were you, i wouldn't want to put my body though all that. plus, there's no guarantee that 3 weeks of eating gluten will be enough to show a positive result.

Lisa Mentor
Lisa
Posted

If you cannot handle eating gluten again, perhaps you shouldn't. You felt better without gluten and that can be a diagnosis in itself. You may not have Celiac, but rather a gluten intolerance. Many people here are self-diagnosed and feel quite comfortable with their conclusion.

I would pursue the endoscopy and biopsy though. It's good to rule out other areas of concern because all ills are not celiac or gluten related.

Oh, and as far as the proceedure goes...nothing to worry about, it's easy.

utahlaura Apprentice
utahlaura
Posted
Hello all,

I have a question..I have been gluten free for about 3 months now, and feeling pretty good for the most part ( you all know after 3 months "learning experiences" can happen that tend to be unpleasant) anyways, I saw a GI doctor about 2 weeks ago who happens to also have celiac...kind of convenient. Anyways, I went to see a GI doctor b/c I need to know for sure if I have celiac ( blood test were inconclusive) and b/c while I do feel better I still get stomach issue and d although it is less frequent..also I have really high levels of billirubin. ANYWAYS, my question is, since I have been gluten free for 3 months they seem to think the biopsy I am having done in 3 weeks will not be accurate since I have been gluten free, SOO they told me to start eating gluten again...I dont think I can. I have been hospitalized 4 times this past summer for severe sickness, and when I do accidentally eat gluten I get really sick ( you all can relate) I just cannot see putting myself through this AGAIN for 3 week. I need to find out if its my gallbladder and or pancreas causing all the trouble or something else, and they are biopsying pretty much everything that can cause stomach issues. did any of you have to do the same thing and how the heck did you manage it...I have a full time job with mental health clients who relay on me to be there, but when my stomach acts up its really bad...any suggestion would be appreciated. Also, does the biopsy hurt and how long recovery time? thanks so much,

Jewles

My IGA tests were inconclusive so my gasroenterologist told me to eat gluten foods for a week before blood testing again because being gluten free for even a couple of weeks will make the antibody test negative.

I made it four days and I was DONE with that!! The IGA test came out negative so he decided to schedule the endoscopy biopsy. There is absolutely NO NEED to eat gluten for a time before this test!!! Damage to the villi ( what the test looks for ) takes years my doc said and no matter what I did food wise before the test would not effect the results at all.

I stayed gluten free then ( geeze! Of course! ) for the few weeks before the test and it showed villi damage. Celiac. The test was a breeze, though. I was unconscious for the whole thing, and they gave me a colonostopy while they were at it to check for possible bad things down there which can be cause by Celiac Disease. Happy to say that came out fine.

I had no "recovery" time. I couldn't tell anything had even been done, so don't worry about that.

If your tissue examination ( biopsy) shows villi damage don't be alarmed. You kinda should already expect that may be the case. Your doc just wants to verify the Celiac diagnosis. They just do.

If you do show damage and are in the "healing" process, don't be shocked to experience confusing reactions to non gluten things sometimes for no apparent reason, a lot of frustration figuring out how to stop your unexpected reations. No one will be able to advise you either. All they can say is that Celiac is "different with everyone" and the healing process is impossibly hard to deal with cause weird things will happen continually.

Even though @%$& happens constantly, though, and the time span for this is unknown for sure ( everyone is different again) if you are gluten free you will still be healing even when weird unexpected reations still go on for a while for no apparent reason even gluten free. Your intestines are screwed up for the next two months to a year. Geeze, can they please give us a more narrow clue???? AAUUGGHH!!! Basically we're on our own and good luck in hell. That's basically it. Rest assued it will improve bit by bit with nose dives all the way..but fewer and fewer with time.

My advise is to just grit and bear it. What else can we do really? What a pain! Look toward the future, though. Keep reminding yourself that once you get through this initial bad part you will discover a lot of health issues you may have had for years will go away from joint pain to gingivitus. Really, I'm not kidding. Things will get tons better so hang in there, and God bless us all.

mslee Apprentice
mslee
Posted

It is a little scary at first, I had never been put under and was very nervous.

I think they could have done a better job putting me under, they let the IV slip and I started bleeding, they started yelling it felt panicked, the anesthesiologist made some joke about inserting a Gov tracking device...and I was out.

After talking to my aunt and cousin who work in the medical field (physical therapist & anesthesiologist) they said to let them know you are nervous and to tell them to put you under slowly. My other cousin also said that I imagined the "joke" ...what does that say about me??? well i am still mostly sane :lol:

But it was ok, it wasn't an emergency situation or anything I just think they could have been more professional.

I had been fighting off a migraine for days before that, after the procedure I got the best sleep of my life and woke up with no headache.

It did not hurt at all, my throat was a little sore, if I ate anything that was not very bland I got heart burn that first month and a half. Basically lived on plain chicken breast, plain rice, plain beans, and lots and lots of fruits and veggies. Nothing spicy or greasy.

I have a Liver Biopsy next week I am a little nervous but I think thats normal.

I don't think my GI expected to find Celiac, his assistant gave me the blood work forms and he came in and said "thats not necessary" and tore them up.

After the biopsy showed Celiac he ordered the blood work which also came back positive.

I think you have gotten some good advice here from what I've heard the damage happens over a period of time. If there is damage to your digestive track they will see it. No reason to make yourself sicker....I had been off gluten about 2 months before he ordered the blood work and it still came back unquestionably Positive.

~ although keep in mind everyone is different & I am still new to this too. Maybe you will get some more feed back from those more experienced???~

Good Luck!

Hang in there!

Katsby Apprentice
Katsby
Posted

I don't think you should eat gluten again if you know it makes you very sick, but that's a choice you have to make for yourself. I would still get the biopsies and other tests done to rule out anything else. I had an endo/colonoscopy the same day and it didn't hurt. I don't even remember having the actual test. I was pretty out of it. I don't remember my throat being sore after, but I kind of just slept the rest of the day. Good luck.

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    • Rogol72
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