Biopsy Scheduled...freaking Out..

[chgomom]

I have the biopsy scheduled but I am fraking out and don't want to do it.

I have been great with diet....and I would prefer to let the diet work for a while longer, and let the supplements for the deficiencies and osteo work for a while longer, re-check my levels and then if it still looks necessary still then do it....

They are pushing it thouh....

And I don't want it done...I want to try the supplements...and maybe a swallow first....

[jmengert]

I was about as nervous as you can get before I had my endoscopy. I had never had any kind of anesthesia before or any kind of procedure. I had mine 2 weeks ago, and it really is a piece of cake (gluten free cake, of course

They hook you up to monitors, give you an oxygen tube, and put an IV in (this was also my first IV--still, it was fine). Then, they put in the anesthesia, which is really mild and doesn't put you all the way under. I was then out. I then woke up in recovery, 15 minutes later, and I left 10 minutes after that. They do spray your throat with a numbing solution for the tube, and it tastes awful, but that was fine. My throat was sore for a day afterward (but only mildly so) and I slept on and off the rest of the afternoon. It's kind of like taking a nice nap--I have no memory of the procedure at all.

So, take it from a big, ole baby--I was a nervous wreck, and it was not a problem at all. I'd do it again without hesitation if I needed to.

Good luck, and let us know how it goes!

[covsooze]

Yep, I was like Julie too - hate hospitals, totally freaked by the idea of anesthetics etc. It's fine, honestly. Just ask for plenty of sedative so you can have a lovely snooze! And the only after effect I had (apart from being sleepy) was a slightly sore throat. you'll be fine

[Gamecreature]

Do they want you to eat gluten before the test? If not, it really is no big deal. There was no discomfort at all and the drugs they gave me left me with no memory of the procedure at all.

[Fiddle-Faddle]

That's the great thing about this board--you can find people who have faced the same (or at least, similar) challenges as you--and a wide variety of different choices.

The people who have chosen to get biopsies (most of whom report that it wasn't so bad) seem to be very comfortable with that decision, as are the people who chose not to.

I have actually had 2 endoscopies--but they never looked for celiac! (I had severe reflux.) I have no intention of going back to for another endoscopy at this point; I have been gluten-free since January, and my intestinal problems were far milder than most peoples' here, so I don't know if they would have found damage even if they had looked before. I wouldn't expect them to find any damage now, but if they did--what could I do? I am already off gluten and feeling much better.

I also did my endoscopies without anesthesia (except for a topical spray on my throat), which might sound crazy to most of you, but the anesthesia (yes, even "twilight" anesthesia) is the most dangerous part of the whole thing, and I have never reacted well to meds of any kind. My children were very small then, and I did not feel that I could justify what I saw as a rather sizable risk.

I did have a lasting minor problem after the second endoscopy--they must have scratched my vocal chords, because I was hoarse for over a year afterwards, and totally and permanently lost my singing ability. Not that I could ever sing my way out of a wet paper bag , but it did make me very sad to not be able to sing lullabies to my youngest any more. Not a life-and-death thing, obviously, but still, I am not happy about it.

So why exactly are you doing the biopsy, anyway? Are you back on gluten? Do you really need that "gold standard" (oh, how I HATE that phrase!) to continue the diet if it is really working well for you? Also, are you willing to risk being turned down for health insurance in the future if the "gold standard" gives you a permanent stamp of "celiac" on your health records?

Is your doctor insisitng on it? This is where I disagree with Dr. Peter Green, who still insists that it is the "gold standard" of diagnosis. A positive response to the diet tells us as much without ANY risk, so why undergo an invasive procedure that does NOT have a perfect accuracy record?

[Audiori J]

Well they say seeing is believing. I think thats the point of the Gold Standard remark, nothing says 100% like actually looking in there. I wonder if you had the vocal issues and all that because you were not put asleep? A person asleep will relax quite a bit more than a person awake, that could make a difference.

I have not had mine done yet, but I would have no issue with it. I have had more severe surgery and was'nt worried. I mean you go in, they put you out, and you wake up and go home.

[jerseyangel]

chgomom,

It's really nothing to worry about

I was completely out and don't remember anything from shortly after they put the IV in. I woke up a little groggy and thirsty, but otherwise fine. I didn't even have a sore throat!

After a little while, I was able to get dressed and go home--well, they told me to go home, but my husband and I stopped at Whole Foods on the way

Really, it'll be fine, and it is a good idea for them to take a look--even to rule out other things at the same time.

[TinkerbellSwt]

I had the same results as jersey.. no after effects at all. I didnt have a sore throat or anything. It was just a nice 15 minute nap.. recovery time was like 10 minutes.. they make you wait a bit just in case.. you just have to have someone to drive you home. They dont like you driving after. That is it.. no biggie at all

[chgomom]

I would prefer to wait till after the holiday's and let the vitamins take time to work.

I had positive antibodies, then after going gluten free they were negative. Then at that time they said I had osteoporosis and osteopenia, multiple deficiencies.

I just don't feel like its the right thing to do right now for some reason.

Its a gut feeling I have. Hard to explain.

I know you guys will think I am weird.

[Fiddle-Faddle]

I don't think you are weird, I think you should listen to your gut!

The biopsy is only a gold standard if they happen to biopsy an area that is damaged. Not all villi will be damaged at the exact same rate; some might be perfectly normal while others are flattened. And if you have been off gluten anyway, whatever damage you did have is likely to be healed now, which makes a biopsy pointless.

And, yes, it is a routine procedure that is quite likely to be totally uneventful--but there ARE risks. Every couple of months, I read about somebody dying on a table during a routine procedure for something minor like getting tubes in the ears, or plastic surgery, or something similar that only uses light sedation. I would not be surprised if people with autoimmune disorders are MORE prone to have flukes like this. I wouldn't want to be one of them. This is also the start of flu season, and the infection rate at hospitals is shockingly bad. Or will you be at a freestanding surgical center? Those do have much, much lower infection rates, but the downside is, if there is any emergency, you are farther from an ER.

I don't think my hoarseness was a result of my not being asleep. I was much LESS relaxed during my first endoscopy, and there were absolutely no problems. My second endoscopy was with the same doctor and team of nurses--they remembered me fromt he first one, we had some laughs before everything started,a nd I was not nervous as I'd been through it before. Besides, it's really cool to watch the procedure on the little TV screen.

[Gamecreature]

Well, if I understand correctly, they're not making any extra holes in you so it's not as risky a procedure as surgery. They're just sticking a camera through an existing opening. It's done on an outpatient basis - I didn't even have to take off my pants. I don't know how things will be done at your facillity, but there was no exposure to other patients when I went.

By all means talk it over with the GI. Mine felt the blood test was conclusive and didn't see the need for another endoscopy for a biopsy (I guess he got a good enough look the first time around - I just wish he was a little quicker to suggest celiac - it would've saved us both a lot of time).

[chgomom]

I cancelled and said I would not do it till we re-checked the labs and see how those have gone.

I had to follow my gut.

I used to to not do that and talk myself out of things. But now, if it seems off I have really been trying to take that. So they will call me me back when they mail out the lab order in a few days.

The upper endoscopy was scheduled for tomorrow morning.

[jerseyangel]

I'm glad you followed your instincts. If something dosen't feel right, there is probably a good reason.

[AliceW]

I have actually had 2 endoscopies--but they never looked for celiac! (I had severe reflux.) I have no intention of going back to for another endoscopy at this point; I have been gluten-free since January, and my intestinal problems were far milder than most peoples' here, so I don't know if they would have found damage even if they had looked before. I wouldn't expect them to find any damage now, but if they did--what could I do? I am already off gluten and feeling much better.

Hello fiddle-faddle,

Your history sounds a bit like mine...severe chronic reflux, two endoscopies that turned up nothing, relatively minor intestinal symptoms...so I'm curious: what led you to go gluten-free, and did going gluten-free make your reflux go away? Also, (I've asked this question elsewhere on the board), how long did it take if so?

Thanks for any info!

Alice

(Sorry for the brief hijack...now back to your regularly scheduled thread... )

[Fiddle-Faddle]

(Sorry for the brief hijack...now back to your regularly scheduled thread... )

that's hysterical!!!

I had the most hideous rash on my arms I've ever seen--looked like really bad poison ivy (but it was January and 15 degrees and I hadn't been doing anything outside), red oozing blisters that itched and burned, and they were totally symmetrical. the only photos on lkine that looked remotely like what I had were poison ivy--and DH.

I went off gluten immediately (amazing what you'll do without a thought when you feel like you're allergic to your own skin), I looked up celiac, got to this website, found tons of other Hashimoto's and Gerd sufferers, and felt like I'd come home! In the meantime, I suddenly lost 24 pounds of blubber, and stopped feeling bloated, and stopped having alternating loose stools and constipation. Hmmmmm.

The dermatologist ordered bloodwork anda skin biopsy at my insistence, but he didn't bother to tell me that being on prednisone for the rash might screw up the results. Still, my IgG was through the roof, so even though he told me everything was normal, my endocrinologist felt that it was a clear indication of celiac or at least, gluten intolerance.

The GERD is much better, but I'm still on Nexium. I tried to go off and back onto Zantac instead, but it didn't seem to work too well- I kept having to snarf down Rolaids, which leave the most awful taste in mymouth. I ought to try again, though--maybe if I cot out the tomato sauce and orange juice, I can make it work!

(Also apologies for not-so-briedf hijack!)

[Gamecreature]

Hello fiddle-faddle,

Your history sounds a bit like mine...severe chronic reflux, two endoscopies that turned up nothing, relatively minor intestinal symptoms...so I'm curious: what led you to go gluten-free, and did going gluten-free make your reflux go away? Also, (I've asked this question elsewhere on the board), how long did it take if so?

Thanks for any info!

Everyone is different, but I'll tell you that frequent bouts with acid reflux and other problems kept me going to the GI until he finally ordered the bloodwork for Celiac.

I've been gluten-free for about 7 weeks now and (when I'm not accidentally gluttening myself) my acid reflux has almost completely gone away. I actually was able to eat pepperoni pizza (gluten-free of course) and I had no problems sleeping that night. Your mileage may vary, but going gluten-free has really settled my stomach.

[Guest nini]

I'm glad you decided to follow your "gut" so to speak... I'm a big advocate of trusting your body to tell you what is going on. If we listen to our bodies when they tell us that something is bad and then we feel better when we remove said "bad" thing from our diet/life then we should be able to trust our "guts"!

Dr's are not perfect by any means, there is still so much disagreement among the "experts" some still say that the biopsy is the only way to be dx'ed and others say that positive dietary response is the most valid indication. My personal opinion of course leans toward positive dietary response a valid diagnostic tool.

You have to make the decisions that only YOU have to be comfortable with. No one else. If you are fine with trying the diet and giving it some time to heal then go for it. If you really feel that you do not want the biopsy then don't let anyone talk you into it if that is not what you feel is right for you right now.

But if you decide at some point down the road that you do want a biopsy to validate your dx, keep in mind that any time spent on the gluten-free diet will begin the healing process and will negate any possible positive test results anyway, unless you have such severe damage that you never heal (which is not that likely... refractory sprue is extremely rare)

[Libby]

I have the biopsy scheduled but I am fraking out and don't want to do it.

I have been great with diet....and I would prefer to let the diet work for a while longer, and let the supplements for the deficiencies and osteo work for a while longer, re-check my levels and then if it still looks necessary still then do it....

They are pushing it thouh....

And I don't want it done...I want to try the supplements...and maybe a swallow first....

Hello, I had my biopsy done two weeks ago and it was really a piece of cake - had a nice short sleep, woke up, had a cuppa and sandwiches then my husband took me home. You have to take it easy for a day or two but I had a nice sleep in the afternoon and the next day felt normal again. I would rather do that than go to the dentist. I did not know what the doctor might find and I was told this week that I have Celiac Disease. Visited the supermarket yesterday and left feeling down - spent some time on the internet and feel a heap better about how I need to change my diet. Seeing the doctor next Friday.

Libby

Melbourne, Aust

[chgomom]

Yeah.....I just think too...I'm looking at a dairy issue, and I haven't removed it yet.

They think my son has an issue. He eats it...and sometimes almost immediately, or with in a few hrs...has kind of a tummy ache and has to go number 2. And his "poops" have never been bif and solid...if that makes sense. Not watery but small long and soft...ewww I know...but hey.

So this weekend...I asked him if he wanted to try and get rid of the tummy aches...and I saidy no creamy stuff...cheesy stuff....and only healthy stuff...and he said yeah...so we're going to try it this weekend and most of next week and if thats the case...then great. In the mean time, I am getting him to a pediatric gi doc...prior to Thanks Giving...

As for me....I want to let these supplemtns marinate and work on the deficiencies/malabsoprtion they found after positive antibodies....let the horse pill of vitamin work on the osteoporosis I have...and rellay be vigilant...minus my gluten-free pie on tg.

[amber-rose]

Ugh, I have to take the test. But I have to eat gluten only for a week before it. And I thought it took atleast 1-3 months of eating gluten for it to show up on the test. But the doctor said only one week. So it'll be a real bummer if it comes out negative. Because I know that i have it! I'm not scared about the actual test, just the being sick for a week or longer. But my mom said today that she'll call the doctor, and if he says that I have to eat gluten for more than a week, she said I dont have to take the test!

[Guest nini]

Ugh, I have to take the test. But I have to eat gluten only for a week before it. And I thought it took atleast 1-3 months of eating gluten for it to show up on the test. But the doctor said only one week. So it'll be a real bummer if it comes out negative. Because I know that i have it! I'm not scared about the actual test, just the being sick for a week or longer. But my mom said today that she'll call the doctor, and if he says that I have to eat gluten for more than a week, she said I dont have to take the test!

one week is NOT enough to show anything, so be prepared that your test may be a false negative... how long have you been gluten-free already? and how old are you again?

[happygirl]

amber,

your doctor is giving you incorrect information. one week will not be enough to rule OUT celiac. if you test positive, then you have it (and will probably be underestimated). however, if you test negative, you can't say that you don't have it. have you had positive bloodwork?

Laura

[amber-rose]

Hi! I just turned 15 a couple weeks ago. & they only ran one blood test on me, which my regular doctor told me that the number was very high. But the gastro told me that it was low. So I dont know. I think it was a 9, but I'm not sure what bloodtest that was.

I've been gluten-free for about 7 months now. & I had always still had problems until about a month or two ago. & now, i'm finally back to normal!

Thats exactly why I dont want to have the bioposy, because I basically know that it'll come back negative.

[Guest nini]

Amber-Rose can you show your parents the info on here that shows that in order for the biopsy to have a chance of being accurate you have to be consuming gluten for a minimum of 3 months prior to the test and not just small amounts of gluten either. I know it's hard because you are under 18 and at the mercy of your parents, but you sound like a very mature 15 year old and I trust my 6 year old to know her own body, they should be able to trust you that you know yours and know that you need to be gluten-free in order to be well and that they shouldn't force you to submit to a test that you know you don't need.

I know, not very realistic, but hey... I'm sorry that your mom thinks you need to have the biopsy, maybe it will help if you tell her that you know biopsy proven (and even just blood test dx'ed) Celiacs that have been denied not only health insurance but life insurance as well. Ask your Dr. if you can get a "gluten intolerance" dx based on positive dietary response if you need notes for school. That's what we did for my daughter.

[amber-rose]

Okay thanks Nini! I'll show my mom or dad this.