Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Endoscopy Tuesday


dmurth01

Recommended Posts

dmurth01 Newbie

So I'm finally going for my endoscopy this Tuesday. I can't wait to find out if there actually is something wrong with me! My GI doc said bloodwork was pretty normal, even though one antibody tested "weak positive". Go figure...

Wish me luck! I've already decided I'm going gluten-free even if results come back normal. I can't take the mindfog, fatigue, depression, cramps, bloating, etc anymore!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



luvs2eat Collaborator

Try not to be nervous about the actual test... it's a piece of cake. There's no icky prep (like w/ a colonoscopy) and they give you good sleepy meds.

I remember when I was in nursing school (in the mid 70s) and they gave endoscopy patients a VALIUM before the test... and then put this big tube down the patient's throat while he/she was completely awake telling them to "SWALLOW... SWALLOW!!"

Thank goodness for those awesome sleepy meds... you'll take a nice nap and wake up when it's all over!!

laughingduck Rookie

Good luck! Don't worry about the test. I did mine without any sedation (they just sprayed a really foul tasting solution down my throat which numbed it a bit). It was not bad, just a little uncomfortable! It only took a few minutes then I was out of there!

GottaSki Mentor
So I'm finally going for my endoscopy this Tuesday. I can't wait to find out if there actually is something wrong with me! My GI doc said bloodwork was pretty normal, even though one antibody tested "weak positive". Go figure...

Wish me luck! I've already decided I'm going gluten-free even if results come back normal. I can't take the mindfog, fatigue, depression, cramps, bloating, etc anymore!

Wow -- I could have written these exact words myself nine months ago!

I too was a weak positive, but my severe symptoms made the GI suggest endo.

The endo itself isn't bad...the meds they give you made me out of it enough that it seemed the whole procedure seemed like a few minutes. I just rested afterward and was fine the next day.

BEST thing was when the endo was complete I could start eating gluten-free. I was very impatient to try gluten-free to see if it was the cause of my lifelong physical problems....by the time I was diagnosed I was very sick, severely bloated, fatigued, achy/stiff, etc, etc, etc.

Good Luck on Tuesday! Don't worry it'll be over quick and then you can start the best test there is -- removing gluten!

Oh, if your endo/biopsy results are not glaringly positive, stick with the diet for at least a few months as many have negative biopsies.

Don't hesitate to ask any questions as you transition, those first months can be tough.

-Lisa

dmurth01 Newbie

Thanks for all the generous replies everyone! It's definitely easing my mind to hear that it's really not a big deal. I'm still just a little scared but I did check and at least I'll be allowed to have my morning joe! (Clear liquids until 12 pm for me).

Thank the lord, I can't function without some caffeine, especially with my chronic fatigue. I actually just woke up from a nap and still could go back to bed until tomorrow!

GottaSki

It's good to hear I'm not alone in this weird, in between boat here. Was your endo positive for celiac or gluten sensitivity?

I'm hoping to start the diet on Wednesday, regardless of results. The only concern I have is that I'll be away for work training all of next week and I don't know what gluten-free options will be there. I suppose I can do a little research in advance.

Thanks again everyone, this board is so helpful already!

GottaSki Mentor

Yes, my endoscopy showed severe villi atrophy/damage and all three biopsy samples came back indicating Celiac...I don't remember the classifications on the biopsy, pretty much only thing I remember was severe damage to my intestines!

As far as starting...go ahead and start tomorrow after the procedure. Travel is never easy, so just do your best to eat simple food (grilled fish/meat, steamed vegies/rice/potatoes/fruit. Our first weeks were filled with minor gluten errors -- I think it was a good month before we had a real handle on all the hidden gluten around us.

If you'll have internet while you are away it will be helpful -- the most helpful thing I did was google any food item or ingredient I had questions on and almost every time it gave me several links to old posts here on celiac.com.

Good Luck tomorrow - let us know how you did and/or if you have more questions.

-Lisa

Lynayah Enthusiast
Try not to be nervous about the actual test... it's a piece of cake. There's no icky prep (like w/ a colonoscopy) and they give you good sleepy meds.

I remember when I was in nursing school (in the mid 70s) and they gave endoscopy patients a VALIUM before the test... and then put this big tube down the patient's throat while he/she was completely awake telling them to "SWALLOW... SWALLOW!!"

Thank goodness for those awesome sleepy meds... you'll take a nice nap and wake up when it's all over!!

I agree! My biopsy went so very smoothly, as did the biopsy of others I've talked to. Really, really . . . it is indeed a "piece of cake" . . . let's make that a gluten-free piece of cake. :) It is a slice of heaven compared to a colonoscopy. You'll be fine.

Relax and know that all will be well. I promise you, the anticipation is the hardest part . . . that, and waiting for the test results.

Glad to hear you're finally going to get some answers. Relax and stay well . . . and be sure to let us know how you do.

Hugs,

Lyn


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



LoraW76 Rookie

I've been eating gluten-free for several weeks now. That won't affect my biopsy will it?

ravenwoodglass Mentor
I've been eating gluten-free for several weeks now. That won't affect my biopsy will it?

Yes it will. You need to be on a gluten diet for the tests to have a good chance of being positive. Even then there is a chance of a false negative. If you are planning on a biopsy you need to get back on gluten immediately.

Lynayah Enthusiast
I've been eating gluten-free for several weeks now. That won't affect my biopsy will it?

You should call your doctor and report that you have not been eating gluten. Chances are he/she will ask you to eat it for around 8 weeks before being tested.

I know this probably feels like a setback, but it is not. Just the opposite: GOOD THING YOU ASKED! You want to make sure that you are being tested as responsibly as possible.

dmurth01 Newbie

So everything went very smoothly (especially the fun sleepy meds!)

I got a report from the doc with photos that said everything looked "normal" through the camera. He did take biopsies, and I have to call for the results next Tuesday.

Haven't gone gluten-free yet. I'm going away on a business trip next week and will be eating out for EVERY meal, so I decided it best to wait until I can go shopping and start off the right way.

I'm trying the diet regardless of the results. It definitely couldn't hurt, and I'm sick of being sick!

Lynayah Enthusiast
So everything went very smoothly (especially the fun sleepy meds!)

I got a report from the doc with photos that said everything looked "normal" through the camera. He did take biopsies, and I have to call for the results next Tuesday.

Haven't gone gluten-free yet. I'm going away on a business trip next week and will be eating out for EVERY meal, so I decided it best to wait until I can go shopping and start off the right way.

I'm trying the diet regardless of the results. It definitely couldn't hurt, and I'm sick of being sick!

Good for you, and best wishes for a great time on your trip.

Enjoy your new eating lifestyle -- you'll feel so much better. Give it time. Let us know the results!

GottaSki Mentor

Very glad that everything looked normal on your biopsy -- I'm glad because although you could still have Celiac, if you do perhaps there hasn't been severe damage -- which means if you do improve on a gluten-free diet you should heal very quickly.

Great News!

and have a wonderful trip!

P.S. Can you eat a gluten filled bagel for me? lol

jkr Apprentice

I did have severe intestinal damage but the doctor couldn't tell by the pictures. The biospy told the story.

Good luck and I hope your damage is minimal.

dmurth01 Newbie
Very glad that everything looked normal on your biopsy -- I'm glad because although you could still have Celiac, if you do perhaps there hasn't been severe damage -- which means if you do improve on a gluten-free diet you should heal very quickly.

Great News!

and have a wonderful trip!

P.S. Can you eat a gluten filled bagel for me? lol

Funny you say that...I had a toasted everything bagel with honey pecan cream cheese this morning at Au Bon Pain! Yes, I feel awful right now but I have 1 week left of gluten.

I've been eating SO much bread/pasta/desserts lately in anticipation of going gluten-free after my business trip. It's definitely been having adverse effects on me though. I have many more neurological/fatigue symptoms than GI issues in general, but I just feel like crap all the time now. Though, beer is the one thing that I still won't drink after giving it up in October. Let's just say my hangovers are way less intense than they used to be since giving up beer!

Also, going gluten-crazy these past few weeks really not helping my waistline. But honestly, if I'm going to stick with gluten-free forever, I figure I may as well get as much now as I can. The worst part is I KNOW this is ridiculous thinking. But I'm also really looking forward to getting my biopsy results and trying the diet no matter what the outcome is.

Thanks for the encouragement everyone! I'll post my results on Tuesday after I call the doctor.

Shellyann Newbie
Thanks for all the generous replies everyone! It's definitely easing my mind to hear that it's really not a big deal. I'm still just a little scared but I did check and at least I'll be allowed to have my morning joe! (Clear liquids until 12 pm for me).

Thank the lord, I can't function without some caffeine, especially with my chronic fatigue. I actually just woke up from a nap and still could go back to bed until tomorrow!

GottaSki

It's good to hear I'm not alone in this weird, in between boat here. Was your endo positive for celiac or gluten sensitivity?

I'm hoping to start the diet on Wednesday, regardless of results. The only concern I have is that I'll be away for work training all of next week and I don't know what gluten-free options will be there. I suppose I can do a little research in advance.

Thanks again everyone, this board is so helpful already!

I'm in the "in-between boat" at the moment too! I have negative blood tests, but I have an IgA antibody deficiency that causes false negatives. I have my endoscopy in a week and a half, but I just wish it was today. I want to start the diet to see if it helps. I am so done with all this. My first week gluten-free will be on a vacation so I am totally thinking the same way you are (or at this point were) about concerns over what options I will have.

dmurth01 Newbie

Doctor says the endoscopy biopsy results are "normal". Actually, that's what the GI doctor's secretary told me after I called multiple times to get my results this week!

So in a way this is comforting to me. However, it still doesn't help me explain the symptoms I've been having for at least 6 months... irregular BM's, depression, brain fog, lethargy, anxiety, irritability, you get the picture. I started this whole celiac testing process because my primary doctor ran the blood test panel and determined I had "weak positive" TTG igA levels.

Now I feel like everything may be a RESULT of depression instead of a cause. The GI doc says all my bloodwork and endoscopy was completely normal, so maybe this whole ordeal was CAUSED by stress and has nothing to do with gluten?

I think the only way I will find out the true cause (depression or gluten) is if I try the gluten-free diet. Maybe I am gluten sensitive and the biopsy did not pick up on it, which I hear occurs all the time around here.

If I follow the diet strictly for awhile and feel the same/worse, I think I might assume all my symptoms are caused by stress/depression and NOT gluten. However, if I feel better, than I suppose I would be gluten sensitive.

Anyone follow me on this? Do I sound crazy or does this make sense?

Wolicki Enthusiast

It makes sense! Give the diet a good, strict try! You have nothing to lose and everything to gain! Tests are notoriously inaccurate, and cannot diagnose gluten intolerance, only Celiac. The effect on quality of life is the same, so I dont kjnow why has to be called 2 different things. Good luck and let us know how it goes!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,836
    • Most Online (within 30 mins)
      7,748

    Art Glassman
    Newest Member
    Art Glassman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @ABP2025, Here's some studies and articles that will help you learn more about thiamin and all... I will write more later. It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ and... Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/      
    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
×
×
  • Create New...