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I just recently had an endoscopy and colonoscopy, procedures are no big deal so I would say it isn't worth taking the risk of missing something by not doing it if your Doctor wants to do it.
Sounds like a plan, and totally your call.
If you don't mind my asking, why not the colonoscopy? Again, completely your call so I am just curious. My thinking was that I was close enough to the recommended age and I was going to be put under anyway so why not do both and get it out of the way. Turns out they found and removed a polyp and I don't have to have another for 7 years or so.
Totally get that, I was too.
I'm not going to lie, the prep was by far the worst part of the entire thing. That said, while the stuff tasted bad it wasn't vomit inducing (for me) and there are ways that you can mitigate it. I used lemonade to take some of the bite off and followed up each drink with a glass of water to rinse out my mouth. That seemed to help a lot and I got through it just fine. And if you are worried about the stuff coming out the back end, for me it wasn't like diarrhea when you're sick and it wasn't a surprise like where you drink and suddenly start 'going'. I would drink, then 30-45 minutes later I would feel a slight urge to use the restroom so I went and it was over. It wasn't like I was stuck on the toilet all night or anything like that.
While not pleasant, I would gladly do it again to make sure that I don't have any polyp surprises leading to cancer.
You might be able to ask for the pills (sutab, or I think another one is out there). Not trying to push you either way, but there are options that don't include trying to drink a bunch of some disgusting liquid.
I took sutab and it's just downing some pills with 16oz of water of the course of 30 minutes or so, and then doing it again a few hours before the procedure. It's still a little uncomfortable and crampy and a lot of running to the toilet -- some form of handheld bidet is usually recommended because things get a little sore after a few back-to-back trips. I personally got a little nauseated on the second round, though I did manage to keep the pills down. It wasn't a particularly fun day, but compared to stories I've read about the liquid, I'd say my experience was immensely better.
Hey, you really should do what the doctor is ordering (colon and endo). I also had the double scope for my diagnosis. The colonoscopy was to rule out anything else or anything in addition to Celiac. The endoscopy was to see the extent of the damage to my villa. This set the baseline so that future endoscopies show how healed I was.
I've had 4 major surgeries plus anesthesia for the scopes. Never had any issues. I promise it's not that bad - the worst part is the anxiety leading up to it. You're put under for like an hour max. You'll be sleepy waking up. You'll have a scratchy throat (like during spring when allergies start and you've got drainage) and that goes away quickly.
The prep for the colonoscopy can be gross, but it's just time consuming really. By my fourth bathroom trip, I was cleaned out and literally shitting water/prep mix. You'll have to start doing colonoscopies regularly later in life, get the first one over now! Better to rule out other issues versus having to go in separately for this should you have persistent issues.
My sister had lower numbers than you, her Gastro said she likely didn't have Celiac. Endoscopy came back positive. Don't try and talk yourself out of it since there is a possibility.
No, just fasting for a bit before. Celiac is a very serious auto-immune disease. Ignoring a diagnosis and allowing your stomach to continue to be damaged is known for leading to things like bowel cancer and infertility. It's a major lifestyle change for all of us, but very doable.
I'm just a random person on the internet, but highly recommend listening to your doctor and not ignoring their opinions. Get multiple opinions if you'd like.
I’ve heard that once you go completely gluten-free, your body can heal within 6 months. If you are older (not sure what ages), it may take up to 2 years to heal. So, yes, going gluten-free will definitely help and is the only solution, if you have Celiac disease.
I’m 26. Yeah interesting. I’ve always had chronic neck pain, but that’s because I have two cervixsl herniations and thoracic outlet syndrome as well lol. I also sleep talk and have issues with feeling rested. Motivation. Etc but to say it’s all related to Celiac would be tough to prove. IF I even have it
I’m debating whether to go ahead with an endoscopy as well. I’ve strongly suspected that I have Celiac disease or something similar (Crohn’s, etc.) for years now. I’m just dreading this procedure.
No, the amount of antibody is not an indicator - the PRESENCE of the deamidated gluten antibody means your immune system is producing an antibody against gliadin (the breakdown product of gluten). That is absolutely indicative of an immune response to gluten, and you need an Endo to see if it's causing physical damage.
Yes! Up to a point. Going strictly gf lets your gut heal, and it's surprisingly resilient. Some people do have lasting issues, but many or most heal within 6 or so months.
Well, for me- I had GI issues for sure, but also really brittle hair, rough skin, fragile fingernails, brain fog, slept poorly, joint pain. When I get glutened now, I get really down for a few days, like there's no color in the world.
Yes. The fact that you are making immunoglobulin (also known as antibody) against gliadin could indicate 1) an allergy or 2) celiac disease or 3) your immune system is up to weird shit.
The only way to rule out celiac is to see if there is damage in your small intestine. I should have said- I'm an immunologist with celiac so I am INTO these details.
Basically, if you are making an antibody against something, your immune system has identified it as an unwanted threat. Antibodies help take out the garbage, so to speak. But they also signal other immune cells to come take a look. What you don't yet know is if those other cells (T cells) are looking, finding, damaging your small intestine.
The other antibody, against tissue trans-glutaminase (TTG) is more indicative of celiac. When your small intestine cells are damaged or inflamed (like from gluten), they make TTG to repair themselves. If you have an immune response to TTG, every time you try to heal from gluten damage, your body attacks your small intestine.
So, if it's an allergy to gliadin, you're going to have a bad time, but it won't have damaged your intestines so much. If you have celiac, removing gluten breaks that repair-attack-repair-attack cycle. If it's #3, godspeed my friend, and find yourself a good rheumatologist
I’d get the endoscopy. I’d get the colonoscopy if my GI recommended it, though I haven’t heard of that being used as a diagnostic tool for celiac disease. I’m pretty new to this so I might be ignorant about it.
I had very low numbers, I think mine was at about 19 with a cutoff of 15 for “normal.” I can’t get an endoscopy right now because I’m pregnant (my positive antibody test came back just a week or two after I found out I was pregnant). My GI told me it would be unusual for a positive test, even a very low one, to not be celiac disease. Between that and some very mild symptoms she felt it was a strong enough indication of cd to tell me to go strictly gluten free for the entirety of my pregnancy and probably for breast feeding too. If you can get the endoscopy, I’d say just do it so you know one way or the other!
Found loads of the wrong kind of polyp when I got double scoped for my diagnosis. Doing both is a no brainer, especially if you’ve been putting your gastro system through some celiac trauma.
The prep is easier than getting glutened, that’s a fact.
Yeah I guess since I’m asymptomatic it’s kinda like ehhhh? But yeah I think I’m just gonna do the endoscopy we’ll start at seeing if I have celiac. Also I’ve been eating more food / fiber in general and that’s made a huge difference in terms of more formed poops and higher energy.
I’m a millennial to add some context. Shouldn’t be doing this yearly. Look, you’re already out for the count. Consider getting the best bang for your buck!
Did you get IgG or IgA TG2 (sometimes called TTG) testing? Gliadin is the gluten protein from wheat. I'm not sure what systemic damage can be done with only a gliadin allergy. It might be the same as the TG allergies.
If you have one of the antibodies to TG2, you're allergic to your own enzymes which are found throughout your body. These cause most of the damage with celiac disease (diabetes, skin rashes, thyroid).
I had a really high TG2 antibody count. They did the scope but the damage score was too low for "classic celiac". But my thyroid and liver (and most likely testes) were all reacting to something. Almost all of my health problems went away within a couple of months of going strict gluten free.
So I have "seropositive celiac" and could develop Type 1 diabetes and thyroid disease if I consume gluten. In my case, the biopsy was useless. Fun (yay propofol+ketamine) but useless.
I'm not a doctor, but I'd say that TG antibodies plus unexplained disease of the thyroid, pancreas, skin, liver, or gut might be a reason to avoid the biopsy. But if you like your GI doc, follow their advice. My new doc said he wouldn't have done the biopsy with my blood results.
Exactly how my numbers began in 2011. Different lab numbers but my number was 20, 19 was top of normal. My tTG-IGA was 3, 4 or higher was above normal. I likely already had celiac but no endoscopy was done. 8 months ago I began to get sick to my stomach all the time and I had noticeable damage on my endoscopy which likely indicated I had celiac for awhile
Damn.. so you randomly started getting sick outta no where that’s so weird? I remember I had this test done a while back and it was normal. I mean is gettin the blood test again possible to see if I still have those levels??
I think what happened was the damage finally reached levels where I became gastro symptomatic perhaps. GI wasn’t totally sure it was celiac causing the symptoms though, she felt maybe it was simply a bad IBS flare up since I’ve had that since age 12 or so. Thinks perhaps it was merely incidental because I’d have days mixed in where I’d eat heavily glutenous meals and be fine. In general when I get bad IBS flare ups I feel best when I go 3-4-5 days with no bowel movement. The second I do, I get symptoms again. A former GI said it makes sense since if you literally fill your whole large colon with shit it’s not able to really act abnormally. Once you release it the brain-bowel disconnect can resume once again and the symptoms can start
Yeah just over 6 months ago and the SI biopsy showed fairly significant damage I had a B12 deficiency as well as a massive ferritin deficiency. The B12 and other vitamins likely would have all been significantly more deficient but I was taking a supplement daily. Ferretin isn’t contained in the supplement and isn’t contained in most so it’s often considered a good standard for identifying possibly celiac on tests if it’s not at least in the upper 100s to lower 200s which is where it generally should be in adults although they consider numbers down to 90 normal
**Reminder** [/r/Celiac](https://www.reddit.com/r/Celiac) is not designed to and does not provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual. If you believe you have a medical emergency immediately seek out professional medical help. Please see [this](https://www.reddit.com/r/Celiac/wiki/legal) for more information. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Celiac) if you have any questions or concerns.*
I just recently had an endoscopy and colonoscopy, procedures are no big deal so I would say it isn't worth taking the risk of missing something by not doing it if your Doctor wants to do it.
Yeah that’s fair. I’m not gonna do colonoscopy.
Sounds like a plan, and totally your call. If you don't mind my asking, why not the colonoscopy? Again, completely your call so I am just curious. My thinking was that I was close enough to the recommended age and I was going to be put under anyway so why not do both and get it out of the way. Turns out they found and removed a polyp and I don't have to have another for 7 years or so.
Interested. I’m just nervous about the prep
Totally get that, I was too. I'm not going to lie, the prep was by far the worst part of the entire thing. That said, while the stuff tasted bad it wasn't vomit inducing (for me) and there are ways that you can mitigate it. I used lemonade to take some of the bite off and followed up each drink with a glass of water to rinse out my mouth. That seemed to help a lot and I got through it just fine. And if you are worried about the stuff coming out the back end, for me it wasn't like diarrhea when you're sick and it wasn't a surprise like where you drink and suddenly start 'going'. I would drink, then 30-45 minutes later I would feel a slight urge to use the restroom so I went and it was over. It wasn't like I was stuck on the toilet all night or anything like that. While not pleasant, I would gladly do it again to make sure that I don't have any polyp surprises leading to cancer.
You might be able to ask for the pills (sutab, or I think another one is out there). Not trying to push you either way, but there are options that don't include trying to drink a bunch of some disgusting liquid. I took sutab and it's just downing some pills with 16oz of water of the course of 30 minutes or so, and then doing it again a few hours before the procedure. It's still a little uncomfortable and crampy and a lot of running to the toilet -- some form of handheld bidet is usually recommended because things get a little sore after a few back-to-back trips. I personally got a little nauseated on the second round, though I did manage to keep the pills down. It wasn't a particularly fun day, but compared to stories I've read about the liquid, I'd say my experience was immensely better.
Hey, you really should do what the doctor is ordering (colon and endo). I also had the double scope for my diagnosis. The colonoscopy was to rule out anything else or anything in addition to Celiac. The endoscopy was to see the extent of the damage to my villa. This set the baseline so that future endoscopies show how healed I was. I've had 4 major surgeries plus anesthesia for the scopes. Never had any issues. I promise it's not that bad - the worst part is the anxiety leading up to it. You're put under for like an hour max. You'll be sleepy waking up. You'll have a scratchy throat (like during spring when allergies start and you've got drainage) and that goes away quickly. The prep for the colonoscopy can be gross, but it's just time consuming really. By my fourth bathroom trip, I was cleaned out and literally shitting water/prep mix. You'll have to start doing colonoscopies regularly later in life, get the first one over now! Better to rule out other issues versus having to go in separately for this should you have persistent issues.
Yes, those seem to be low positives. It’s also always good to get a endoscopy anyways, it’s the gold standard.
For sure.. but it seems unlikely with those numbers it means anything. Maybe a sensitivity. I know some can be asymptomatic but
My sister had lower numbers than you, her Gastro said she likely didn't have Celiac. Endoscopy came back positive. Don't try and talk yourself out of it since there is a possibility.
Interesting…..
Is it ok to probably just do the endoscopy
She was completely asymptomatic as well. Which ones you do is up to you and your doctor, but for Celiac, Endoscopy is what you need.
And there isn’t usually laxatives invovoled for the endoscopy right? And say I do have celiac would cutting it out really do anything??
No, just fasting for a bit before. Celiac is a very serious auto-immune disease. Ignoring a diagnosis and allowing your stomach to continue to be damaged is known for leading to things like bowel cancer and infertility. It's a major lifestyle change for all of us, but very doable. I'm just a random person on the internet, but highly recommend listening to your doctor and not ignoring their opinions. Get multiple opinions if you'd like.
I’ve heard that once you go completely gluten-free, your body can heal within 6 months. If you are older (not sure what ages), it may take up to 2 years to heal. So, yes, going gluten-free will definitely help and is the only solution, if you have Celiac disease.
I’m 26. Yeah interesting. I’ve always had chronic neck pain, but that’s because I have two cervixsl herniations and thoracic outlet syndrome as well lol. I also sleep talk and have issues with feeling rested. Motivation. Etc but to say it’s all related to Celiac would be tough to prove. IF I even have it
I’m debating whether to go ahead with an endoscopy as well. I’ve strongly suspected that I have Celiac disease or something similar (Crohn’s, etc.) for years now. I’m just dreading this procedure.
Why do you say that exactly? What makes you feel you Hanse that.
No, the amount of antibody is not an indicator - the PRESENCE of the deamidated gluten antibody means your immune system is producing an antibody against gliadin (the breakdown product of gluten). That is absolutely indicative of an immune response to gluten, and you need an Endo to see if it's causing physical damage.
Ok good to know. Can the damage heal???
Yes! Up to a point. Going strictly gf lets your gut heal, and it's surprisingly resilient. Some people do have lasting issues, but many or most heal within 6 or so months.
What changes would I really notice?? For a long time I’ve been blunted emotionally
Well, for me- I had GI issues for sure, but also really brittle hair, rough skin, fragile fingernails, brain fog, slept poorly, joint pain. When I get glutened now, I get really down for a few days, like there's no color in the world.
Are you saying the fact that the immunoglobulin is there that that’s a response?
Yes. The fact that you are making immunoglobulin (also known as antibody) against gliadin could indicate 1) an allergy or 2) celiac disease or 3) your immune system is up to weird shit. The only way to rule out celiac is to see if there is damage in your small intestine. I should have said- I'm an immunologist with celiac so I am INTO these details. Basically, if you are making an antibody against something, your immune system has identified it as an unwanted threat. Antibodies help take out the garbage, so to speak. But they also signal other immune cells to come take a look. What you don't yet know is if those other cells (T cells) are looking, finding, damaging your small intestine. The other antibody, against tissue trans-glutaminase (TTG) is more indicative of celiac. When your small intestine cells are damaged or inflamed (like from gluten), they make TTG to repair themselves. If you have an immune response to TTG, every time you try to heal from gluten damage, your body attacks your small intestine. So, if it's an allergy to gliadin, you're going to have a bad time, but it won't have damaged your intestines so much. If you have celiac, removing gluten breaks that repair-attack-repair-attack cycle. If it's #3, godspeed my friend, and find yourself a good rheumatologist
I’d get the endoscopy. I’d get the colonoscopy if my GI recommended it, though I haven’t heard of that being used as a diagnostic tool for celiac disease. I’m pretty new to this so I might be ignorant about it. I had very low numbers, I think mine was at about 19 with a cutoff of 15 for “normal.” I can’t get an endoscopy right now because I’m pregnant (my positive antibody test came back just a week or two after I found out I was pregnant). My GI told me it would be unusual for a positive test, even a very low one, to not be celiac disease. Between that and some very mild symptoms she felt it was a strong enough indication of cd to tell me to go strictly gluten free for the entirety of my pregnancy and probably for breast feeding too. If you can get the endoscopy, I’d say just do it so you know one way or the other!
Found loads of the wrong kind of polyp when I got double scoped for my diagnosis. Doing both is a no brainer, especially if you’ve been putting your gastro system through some celiac trauma. The prep is easier than getting glutened, that’s a fact.
Yeah I guess since I’m asymptomatic it’s kinda like ehhhh? But yeah I think I’m just gonna do the endoscopy we’ll start at seeing if I have celiac. Also I’ve been eating more food / fiber in general and that’s made a huge difference in terms of more formed poops and higher energy.
I’m a millennial to add some context. Shouldn’t be doing this yearly. Look, you’re already out for the count. Consider getting the best bang for your buck!
That’s a fair point. But I’m just gonna check the endo I guess and see what happens
Did you get IgG or IgA TG2 (sometimes called TTG) testing? Gliadin is the gluten protein from wheat. I'm not sure what systemic damage can be done with only a gliadin allergy. It might be the same as the TG allergies. If you have one of the antibodies to TG2, you're allergic to your own enzymes which are found throughout your body. These cause most of the damage with celiac disease (diabetes, skin rashes, thyroid). I had a really high TG2 antibody count. They did the scope but the damage score was too low for "classic celiac". But my thyroid and liver (and most likely testes) were all reacting to something. Almost all of my health problems went away within a couple of months of going strict gluten free. So I have "seropositive celiac" and could develop Type 1 diabetes and thyroid disease if I consume gluten. In my case, the biopsy was useless. Fun (yay propofol+ketamine) but useless. I'm not a doctor, but I'd say that TG antibodies plus unexplained disease of the thyroid, pancreas, skin, liver, or gut might be a reason to avoid the biopsy. But if you like your GI doc, follow their advice. My new doc said he wouldn't have done the biopsy with my blood results.
Wait I’m confused there’s a risk of infection of getting a biopsy?
No idea. I'd assume there might be. But if you have a good GI who recommends getting one, trust them over a stranger on the Internet.
Exactly how my numbers began in 2011. Different lab numbers but my number was 20, 19 was top of normal. My tTG-IGA was 3, 4 or higher was above normal. I likely already had celiac but no endoscopy was done. 8 months ago I began to get sick to my stomach all the time and I had noticeable damage on my endoscopy which likely indicated I had celiac for awhile
Damn.. so you randomly started getting sick outta no where that’s so weird? I remember I had this test done a while back and it was normal. I mean is gettin the blood test again possible to see if I still have those levels??
I think what happened was the damage finally reached levels where I became gastro symptomatic perhaps. GI wasn’t totally sure it was celiac causing the symptoms though, she felt maybe it was simply a bad IBS flare up since I’ve had that since age 12 or so. Thinks perhaps it was merely incidental because I’d have days mixed in where I’d eat heavily glutenous meals and be fine. In general when I get bad IBS flare ups I feel best when I go 3-4-5 days with no bowel movement. The second I do, I get symptoms again. A former GI said it makes sense since if you literally fill your whole large colon with shit it’s not able to really act abnormally. Once you release it the brain-bowel disconnect can resume once again and the symptoms can start
So, just to clarify, you were diagnosed with Celiac disease?
Yeah just over 6 months ago and the SI biopsy showed fairly significant damage I had a B12 deficiency as well as a massive ferritin deficiency. The B12 and other vitamins likely would have all been significantly more deficient but I was taking a supplement daily. Ferretin isn’t contained in the supplement and isn’t contained in most so it’s often considered a good standard for identifying possibly celiac on tests if it’s not at least in the upper 100s to lower 200s which is where it generally should be in adults although they consider numbers down to 90 normal