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Having Endoscopy Friday After 16 Months gluten-free ...

marciab

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marciab Enthusiast
marciab
Posted

I've been having some pain around my belly button, so I had a CT about 2 weeks ago. It came back normal - YEAH !!

Now, I am scheduled for an endoscopy this Friday to look for celiac and the reason behind the abdominal pain ... It's not as painful now, it just feels like that area is in spasm all the time ... I'm fairly certain it is from adding in too many leafy greens too quickly ... :blink:

I told my GI that I had been gluten free since September 2005 and was wondering whether or not he would not find any flattened villi. He said based on the fact that I have messed up soooo many times, he thinks he'll find it if it's there ... :lol:

Soooo, because I am too foggy to get the diet straight :blink: , I can still have flattened villi.

We'll see. Wish me luck ... marcia

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marciab Enthusiast
marciab
Posted
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I didn't ask in the first post, but I was wondering if others here have had a similar experience ... going on the diet, finding out it helped tremendously, then having to have an endoscopy afterall ...

I've read that you have to be eating gluten to get a valid test result, but are there others here who had endoscopies this long after getting most of the gluten out of their diets and were found to have celiac ?

How accurrate is my doc to say that my gluten mistakes (many, but none intentional and all cross contaminations) are enough to count ?

thanks ... marcia

Judyin Philly Enthusiast
Judyin Philly
Posted

boy will I bee anxious to hear your results.

I'm to see a new GI on March 8th.

I thought your neuro symptoms were all gone, like the drunken walk etc.. I don't have you confused with someone else do I?

Judy

dlp252 Apprentice
dlp252
Posted

Well, I don't know...if you've messed up a lot, there may be some patches of damage, but it seems to me that the damage would be patchy at best and that it would be so very easy to miss the damaged spots. I'd think he'd have to take a lot of samples, and even then, it would probably get missed. Still, if you are having pain, the endoscope can check for other problems as well. Mine didn't find celiac damage, but did find a growth on my pancreatic/bile duct, a stomach polyp and some damage to my esophagus from GERD. :P

marciab Enthusiast
marciab
Posted
  • Author

Judy,

You too, huh ?? I had some pretty bad pains in my abdomen for a few days, so I got in to see a GI pretty quickly. The pain is not as bad, but it is still hard and very tender.

My ataxia is still gone ... no more drunken walk ever ... YEAH !!!

I still get the myoclonus (seizures) when I eat gluten though ... And my words were scrambled a few times this week :blink: I was glutenned Saturday Jan 28th, when I tried Back to Nature rice crackers on purpose to see if they had been bothering me ... That was a big YES ...

Are you looking into abdominal pain or celiac or both ? Do you still have ataxia ?

I'm beginning to realize that we all heal in different ways ... Marcia

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Everything I have read says that you have to havethe equivalent of 2-4 pieces of bread PER DAY FOR 4 MONTHS in order for celiac damage that can be seen in a biopsy.

Are you getting that much by CC?

This doesn't mean that they might not find something else in your endoscopy. Maybe it's a good idea, but it seems to me that in your case, it's a fishing expedition, and they don't know what they're looking for.

Results should be interesting, either way. Keep us posted!

marciab Enthusiast
marciab
Posted
  • Author
Well, I don't know...if you've messed up a lot, there may be some patches of damage, but it seems to me that the damage would be patchy at best and that it would be so very easy to miss the damaged spots. I'd think he'd have to take a lot of samples, and even then, it would probably get missed. Still, if you are having pain, the endoscope can check for other problems as well. Mine didn't find celiac damage, but did find a growth on my pancreatic/bile duct, a stomach polyp and some damage to my esophagus from GERD. :P

Bummer ... I am trying so hard not to worry about the damage untreated celiac has done ...

That intesteresting that they didn't find celiac damage ... how long after going gluten-free, was your egd ?

What did they do about the growth on your pancreatic / bile duct, stomach polyp, etc ?

Was that from untreated celiac ? I hope you are ok now ... marcia

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dlp252 Apprentice
dlp252
Posted
Bummer ... I am trying so hard not to worry about the damage untreated celiac has done ...

That intesteresting that they didn't find celiac damage ... how long after going gluten-free, was your egd ?

What did they do about the growth on your pancreatic / bile duct, stomach polyp, etc ?

Was that from untreated celiac ? I hope you are ok now ... marcia

Thank you, I'm getting better every day, and I sure didn't mean to scare you!

I had my endoscope a little more than 5 months after going gluten-free, and before that I had been on a low carb diet...wasn't gluten-free, but by it's nature I wasn't consuming much gluten. I'd been on that diet for at least 2 years maybe 3.

For the polyp, they just removed it there and then. The esophagus wasn't mentioned at all, lol. For the pancreatic/bile duct, they had to do two more endoscopes. On my first scope they couldn't reach it to get a biopsy, so I had to have a second one with more articulating scope. The biopsies were inclonclusive (reviewed by three pathology labs) as to whether it was pre-cancer or not, so the doctor wanted to see if reducing inflammation would cause the cells to look more normal. He had me take Prilosec/Zantac for a couple of months then we did another biopsy after which he said the cells were ruled "normal" although the growth was still there.

So, in the end, I'm not sure how much of this is tied to the gluten thing...but I figure the inflammation caused by eating something I'm intolerant too can't be good, lol.

marciab Enthusiast
marciab
Posted
  • Author
Everything I have read says that you have to havethe equivalent of 2-4 pieces of bread PER DAY FOR 4 MONTHS in order for celiac damage that can be seen in a biopsy.

Are you getting that much by CC?

This doesn't mean that they might not find something else in your endoscopy. Maybe it's a good idea, but it seems to me that in your case, it's a fishing expedition, and they don't know what they're looking for.

Results should be interesting, either way. Keep us posted!

I was getting glutenned regularly ("D" every morning when waking up), but I figured it was just the new me, then I figured it was dairy, then I finally caught on about cross contamination after posting here about it ... DUH !!! The brain fog is pretty thick over my way :blink:

I eat mostly whole foods, so it has been fairly simple to figure out ...

I stopped eating Kettle chips and Back to Nature rice crackers the same day about a month ago, but always figured it was really just the Kettle chips since I knew people here were getting contaminated. It still could have been those too. But then I tried the Back to Nature crackers again and got a REALLY BIG response.

:huh: So yes, I have made a lot of mistakes, but not 2 - 4 slices of bread a day. I wonder if my reaction / symptoms have anything to do with the amount of damage done too ..... hmmm ... I have a lot of symptoms ... Maybe that's why the doc didn't tell me to eat gluten until the test ... Not that I would have though ... :P

I'll definitely keep y'all posted ... Marcia

marciab Enthusiast
marciab
Posted
  • Author
Thank you, I'm getting better every day, and I sure didn't mean to scare you!

I had my endoscope a little more than 5 months after going gluten-free, and before that I had been on a low carb diet...wasn't gluten-free, but by it's nature I wasn't consuming much gluten. I'd been on that diet for at least 2 years maybe 3.

For the polyp, they just removed it there and then. The esophagus wasn't mentioned at all, lol. For the pancreatic/bile duct, they had to do two more endoscopes. On my first scope they couldn't reach it to get a biopsy, so I had to have a second one with more articulating scope. The biopsies were inclonclusive (reviewed by three pathology labs) as to whether it was pre-cancer or not, so the doctor wanted to see if reducing inflammation would cause the cells to look more normal. He had me take Prilosec/Zantac for a couple of months then we did another biopsy after which he said the cells were ruled "normal" although the growth was still there.

So, in the end, I'm not sure how much of this is tied to the gluten thing...but I figure the inflammation caused by eating something I'm intolerant too can't be good, lol.

I've been scared for awhile, but just keeping it quiet ... you know how it is ... Our diet histories are similar ... That's great that the cells returned to normal though ... marcia

dlp252 Apprentice
dlp252
Posted
I've been scared for awhile, but just keeping it quiet ... you know how it is ... Our diet histories are similar ... That's great that the cells returned to normal though ... marcia

Well, I wasn't 100% sure they were normal, but I think they were normal enough, lol--something about the way he said it I guess. I still think about it "turning" one day, but try not to obsess about it. One of my doctors (not the GI) said I should have it checked again in about 3-5 years and I think I will.

marciab Enthusiast
marciab
Posted
  • Author
Well, I wasn't 100% sure they were normal, but I think they were normal enough, lol--something about the way he said it I guess. I still think about it "turning" one day, but try not to obsess about it. One of my doctors (not the GI) said I should have it checked again in about 3-5 years and I think I will.

I hear ya !! When they told me the CT was normal the other day, I just said "Great" and hung up ... Good enough for me ... :P

I see you were diagnosed with h.pylori and something else back in Dec. I hope you are feeling better soon... Is this a quick treatment regime ? Marcia

Tritty Rookie
Tritty
Posted

Hello! I'm really new here - I have my endoscopy on Tuesday. My GI said not to eat gluten (I've only been gluten free for 3 weeks). I was loosing 3-4 lbs a week - so not worth it :) She said that celiac is always patchy anyway - and especially b/c I've not had symptoms all of my life (only since Sept or so). They are going to take 4 or 5 samples and hope they find a spot...So I guess not everyone believes in eating the gluten beforehand. Why make yourself so sick just to make their job easier?

dlp252 Apprentice
dlp252
Posted
I see you were diagnosed with h.pylori and something else back in Dec. I hope you are feeling better soon... Is this a quick treatment regime ? Marcia

Sort of quick. I was never sure what symptoms of mine where caused by what, lol, so I'm feeling better now, but it's hard to pin down what caused what and what's helping what. :lol: I had to take something called a "prevpac" which consisted of 2 strong antibiotics (amoxicylin and clarithromycin) and a prevacid along with a bunch of pepto bismol (the bismuth in pepto is toxic to the H.Pylori). I took that for combo for 14 days, then just finished the 30 day follow up regime which was a strong probiotic with Prilosec OTC (supposed to further heal the stomach where the H.Pylori lives). So now I'm just slowly tapering off the Prilosec (on my own--doctor didn't say to), but actually the treatment is done. I think they'll want to retest to make sure it's gone.

marciab Enthusiast
marciab
Posted
  • Author
Hello! I'm really new here - I have my endoscopy on Tuesday. My GI said not to eat gluten (I've only been gluten free for 3 weeks). I was loosing 3-4 lbs a week - so not worth it :) She said that celiac is always patchy anyway - and especially b/c I've not had symptoms all of my life (only since Sept or so). They are going to take 4 or 5 samples and hope they find a spot...So I guess not everyone believes in eating the gluten beforehand. Why make yourself so sick just to make their job easier?

Welcome to the board. Good to know another doctor doesn't insist on you eating gluten and making yourself sick for the biopsy. Good luck on your biopsies ...let us know how you do ... marcia

marciab Enthusiast
marciab
Posted
  • Author
Sort of quick. I was never sure what symptoms of mine where caused by what, lol, so I'm feeling better now, but it's hard to pin down what caused what and what's helping what. :lol: I had to take something called a "prevpac" which consisted of 2 strong antibiotics (amoxicylin and clarithromycin) and a prevacid along with a bunch of pepto bismol (the bismuth in pepto is toxic to the H.Pylori). I took that for combo for 14 days, then just finished the 30 day follow up regime which was a strong probiotic with Prilosec OTC (supposed to further heal the stomach where the H.Pylori lives). So now I'm just slowly tapering off the Prilosec (on my own--doctor didn't say to), but actually the treatment is done. I think they'll want to retest to make sure it's gone.

wow, I can see where your symptoms would overlap ... And then the drugs have side effects too, so until you get off them, you'll never get this all figured out ... You sure have been through a lot lately... I hope this is the answer for you ... Marcia

Tritty Rookie
Tritty
Posted

Thanks - you too!

marciab Enthusiast
marciab
Posted
  • Author

Hi again.

I had my EGD yesterday. It says that there is some subtle flattening of the duodenal folds in the 2nd and 3rd part of the duodenum, possibly partially treated celiac as the patient is on a self imposed gluten free diet. And erythema in the antrum compatible with non-erosive gastritis. (biopsy)

I didn't get to talk to my doctor yesterday, so I'll find out more next week.

I was surprised at how easy it was. My first endoscopy back in 2004 was not as easy. I was partially awake back then and remember gagging and them pulling the tube out. This time they put me to sleep. I hope if they decide to do a colonoscopy, it will be as easy.

I feel drugged still, is this normal ? I haven't been able to eat much though. My intestines/stomach are hurting, but this is why I had the endoscopy at this time ... It could also be from the juice they gave me. It had high fructose corn syrup in it and I cramped up immediately when I drank it ... I was too drugged to remember to look until I was in pain .... OW

What do y'all think of the results so far ? I've been too loopy to look anything up ..

Marcia

Judyin Philly Enthusiast
Judyin Philly
Posted

HI

SO GLAD IT 'S OVER FOR YO

I SURE DON'T KNOW WHAT YOUR RESULTS ARE SAYING BUT POSTING SO I CAN LEARN MORE TOO.

HUGS

JUDY

marciab Enthusiast
marciab
Posted
  • Author
HI

SO GLAD IT 'S OVER FOR YO

I SURE DON'T KNOW WHAT YOUR RESULTS ARE SAYING BUT POSTING SO I CAN LEARN MORE TOO.

HUGS

JUDY

Thanks. I'm anxious to hear what others think too. I'm confused by the "subtle flattening of the duodenal folds " part. I thought it was villi they were looking at, not folds... Not that I know the difference ... Research is out until I am more awake too ...

Good luck with your GI visit in March ....

Marcia

flagbabyds Collaborator
flagbabyds
Posted

especially when you have had general anesthesia it is normal for you to feel drugged for a day or so. Endoscopies aren't long procedures so they didn't give you that much and it should wear off soon, just rest and relax and sleeping always helps me.

after my jaw surgery (like a 7 hour surgery under gen-anesthesia) i felt so drugged for the next like 5 days (i was also in the ICU and they were pushing the morphine butttttt....)

it shoudl wear off soon.

dlp252 Apprentice
dlp252
Posted

Hum, I don't know that I've heard the term "folds". I'll be interested to hear what your doctor has to say about it all! So does that mean you have gastritis? Oh, I hate waiting for results, lol, even when they're not mine. I'll be anxious to hear more after you talk to your doctor next week.

I felt really tired after all mine, and maybe a bit drugged. The first scope was done along with a colonoscopy, so I was more groggy then. I remember thinking I was glad I had the next day off of work to, so I must have been tired then too. But I can say that after all three I WANTED and was able to eat right away. In fact on the second one, I ate a gluten-free bar on the way home from the hospital, lol.

marciab Enthusiast
marciab
Posted
  • Author

"especially when you have had general anesthesia it is normal for you to feel drugged for a day or so. Endoscopies aren't long procedures so they didn't give you that much and it should wear off soon, just rest and relax and sleeping always helps me.

after my jaw surgery (like a 7 hour surgery under gen-anesthesia) i felt so drugged for the next like 5 days (i was also in the ICU and they were pushing the morphine butttttt....) "

Thanks ... I will be so releived when this feeling is gone ... I'm so sensitive to drugs ...

"Hum, I don't know that I've heard the term "folds". I'll be interested to hear what your doctor has to say about it all! So does that mean you have gastritis? Oh, I hate waiting for results, lol, even when they're not mine. I'll be anxious to hear more after you talk to your doctor next week.

I felt really tired after all mine, and maybe a bit drugged. The first scope was done along with a colonoscopy, so I was more groggy then. I remember thinking I was glad I had the next day off of work to, so I must have been tired then too. But I can say that after all three I WANTED and was able to eat right away. In fact on the second one, I ate a gluten-free bar on the way home from the hospital, lol."

He didn't recommend any meds so I'm thinking he didn't see gastritis. You know how they love to write those scripts for nexium :lol:

The nurse gave me juice with corn syrup in it too. I had immediate reaction to it, "D", and was still doubled over in pain when I left ... She told me it would just have to get out of my system. I can just imagine what the other patients thought when they saw me leave though ... I've been in pain off and on since ...

I hate waiting for results too. He was supposed to talk to me afterwards and of course, my mind has been racing as to why he didn't. :ph34r:

My eyes are glassy today still :blink: ... marcia

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