Why bother with a colonoscopy?

[Akilah Smith]

My latest blood tests revealed a high likelihood of celiac disease and my doctor wants to do a colonoscopy to be absolutely sure. In order to get it I'm being advised to eat a ton of gluten leading up to the colonoscopy and I really don't want to harm myself like that just to be 100% certain. Also, I have to get covid tested before they can do the procedure, so they must worry that covid could spread in the exam rooms and from the instruments. My thinking is, if I already know pretty much that I have celiac disease, why bother with the rest of this? Especially when a diagnosis would likely increase my life insurance rate. I could just go ahead and change my diet. Am I wrong?

[trents]

Your thinking here is certainly reasonable. The proof is in the pudding, as the old saying goes. If you adopt a gluten free diet and your symptoms improve, you have your answer.

[trents]

Oh, colonoscopies are not used to diagnose celiac disease. For that, an upper GI endoscopy would be used. Celiac is a disease of the small bowel. So, no bowel laxative prep necessary for an upper GI!

[Scott Adams]

Feel free to share your blood test results along with the markers for a positive result if you’d like. 

[Akilah Smith]

3 hours ago, trents said:

Oh, colonoscopies are not used to diagnose celiac disease. For that, an upper GI endoscopy would be used. Celiac is a disease of the small bowel. So, no bowel laxative prep necessary for an upper GI!

You're right. I got it mixed up. They said upper endoscopy.

[CMCM]

You could be correct.  I guess it all depends on how much you feel compelled to have a definitive diagnosis....or not.  

Also worth considering is that the villous atrophy they are searching for in the endoscopy could be missed because it tends to occur in patches.  

I'm assuming gluten makes you sick in some (or many) ways....obviously, eating a completely gluten free diet is necessary.  Many celiac specialists these days are de-emphasizing getting an endoscopy, stating that a positive blood test and feeling better on a gluten free diet are adequate.  As additional information for your own satisfaction, you could order an online gene test (on your own, not through insurance) to find out if you have a celiac related gene.  The blood test, feeling better without gluten, and the gene test are really all that you need....in the opinion of MANY celiac specialists and also in my own opinion too.

[Lotte18]

I was diagnosed with Celiac after having an endoscopy/colonoscopy in January.  I highly recommend getting both done in one go.  The colonoscopy revealed a very large polyp that would have become cancerous in a few years.  The endoscopy ruled out stomach issues and other potential intestinal problems.  The prep included drinking a vat of Gatorade.  Really not fun.  But I got through it.  I don't know if inflammation from Celiac can cause polyps but I wouldn't be surprised.  I think it's better to know what's going on rather than worry about what might be going on.  Whatever you choose, I hope you feel better soon.

[Btekin]

I was diagnosed by blood work only. In fact I had an Endoscopy scheduled for a month out when my blood work came back and the doctor was ruling out Crohn’s disease or Celiacs so when the blood work came back it was positive and my numbers where high and my GI doctor said it was up to me if I wanted to keep the apt for the endoscopy since I already had my answer and she said to call and cancel it if I decided to not have it done OR a gluten free diet was not relieving my symptoms after a week of strict gluten-free. I went gluten-free that day and never looked back and my symptoms stopped immediately and I canceled my endoscopy. However about 6 months later I had bad stomach issues and the doctor scheduled me for an endoscopy for gastritis and I had it done and the report said gastristis and blunted villi and suspected celiacs disease and to follow up with blood work to confirm celiacs diagnosis. (Already had the blood work) so my long answer point is you can still be gluten free and have the endoscopy. They will be able to see damage in the villi. 

[Kate333]

4 minutes ago, Btekin said:

I was diagnosed by blood work only. In fact I had an Endoscopy scheduled for a month out when my blood work came back and the doctor was ruling out Crohn’s disease or Celiacs so when the blood work came back it was positive and my numbers where high and my GI doctor said it was up to me if I wanted to keep the apt for the endoscopy since I already had my answer and she said to call and cancel it if I decided to not have it done OR a gluten free diet was not relieving my symptoms after a week of strict gluten-free. I went gluten-free that day and never looked back and my symptoms stopped immediately and I canceled my endoscopy. However about 6 months later I had bad stomach issues and the doctor scheduled me for an endoscopy for gastritis and I had it done and the report said gastristis and blunted villi and suspected celiacs disease and to follow up with blood work to confirm celiacs diagnosis. (Already had the blood work) so my long answer point is you can still be gluten free and have the endoscopy. They will be able to see damage in the villi. 

I'm sorry you got sick after doing well on the gluten-free diet.  2 points to make here: 

1.   GI docs insist that you keep eating G right up until the day before the procedure in order to ensure the greatest accuracy of the procedure and assessing the extent of damage.  

2.  Even those who try to adopt a gluten-free diet can easily end up getting exposed to G because so many foods (esp. packaged, processed) include it as a hidden (not clearly labeled as such) ingredient.  Eating outside your home (restaurants, schools) or sharing meals with others who aren't gluten-free are also common ways people get G exposed.    Sounds like that perhaps happened in your case?    But it does take awhile to get the hang of a truly gluten-free diet.  And gluten-free means COMPLETELY gluten-free....not just fewer meals with G.  

[trents]

Processed food manufacturers can and not infrequently do change the formulations of their products. You may be eating something that used to be safe for you but is no longer gluten free.

[Btekin]

2 hours ago, Kate333 said:

I'm sorry you got sick after doing well on the gluten-free diet.  2 points to make here: 

1.   GI docs insist that you keep eating G right up until the day before the procedure in order to ensure the greatest accuracy of the procedure and assessing the extent of damage.  

2.  Even those who try to adopt a gluten-free diet can easily end up getting exposed to G because so many foods (esp. packaged, processed) include it as a hidden (not clearly labeled as such) ingredient.  Eating outside your home (restaurants, schools) or sharing meals with others who aren't gluten-free are also common ways people get G exposed.    Sounds like that perhaps happened in your case?    But it does take awhile to get the hang of a truly gluten-free diet.  And gluten-free means COMPLETELY gluten-free....not just fewer meals with G.  

I was completely gluten free. My blood lab markers at the 6 month mark were negative. I only had the endoscopy because I was having nausea 24/7 and they thought I had h-pylori my biopsy showed no h-pylori and was negative for celiacs (due to gluten free diet) but my villi was still blunted 6 months later and showed that it wasn’t fully healed. I am very sensitive to gluten and violently throw up and pass out when cross contaminated. In two years I’ve been cross contaminated 3 times. We do not eat out ever.. I didn’t eat out much before my diagnosis as we are a blended Turkish and Italian family right from the countries and we cook at home all 3 meals pretty much every day of our lives and grew up that way. We are also pretty much a gluten-free house. We eat strict paleo. My young children have their gluten items but it’s very well managed in our house hold and designated spaces for it. I think you misread my statement. I know she should eat gluten for her diagnosis with an endoscopy but I was stating that in the time frame she has her test scheduled from she will still have damage at that time. I for one could never go back to eating gluten because I get so sick of I do that It wouldn’t even be a question for me I would pass it up and not do it. I’ve been gluten free for 2 years since my diagnosis and have my blood work checked every 6 months the first year and now once a year. All negative. I also have my blood work checked every 3 months to make sure my vitamins are going back up. At the time of my diagnosis I had low everything and diagnosed malnutrition. I also have an endoscopy Yearly as my celiacs so long undiagnosed caused pre cancerous cells in my intestines. 

[Btekin]

Just now, Btekin said:

I was completely gluten free. My blood lab markers at the 6 month mark were negative. I only had the endoscopy because I was having nausea 24/7 and they thought I had h-pylori my biopsy showed no h-pylori and was negative for celiacs (due to gluten free diet) but my villi was still blunted 6 months later and showed that it wasn’t fully healed. I am very sensitive to gluten and violently throw up and pass out when cross contaminated. In two years I’ve been cross contaminated 3 times. We do not eat out ever.. I didn’t eat out much before my diagnosis as we are a blended Turkish and Italian family right from the countries and we cook at home all 3 meals pretty much every day of our lives and grew up that way. We are also pretty much a gluten-free house. We eat strict paleo. My young children have their gluten items but it’s very well managed in our house hold and designated spaces for it. I think you misread my statement. I know she should eat gluten for her diagnosis with an endoscopy but I was stating that in the time frame she has her test scheduled from she will still have damage at that time. I for one could never go back to eating gluten because I get so sick of I do that It wouldn’t even be a question for me I would pass it up and not do it. I’ve been gluten free for 2 years since my diagnosis and have my blood work checked every 6 months the first year and now once a year. All negative. I also have my blood work checked every 3 months to make sure my vitamins are going back up. At the time of my diagnosis I had low everything and diagnosed malnutrition. I also have an endoscopy Yearly as my celiacs so long undiagnosed caused pre cancerous cells in my intestines. 

 

2 hours ago, trents said:

Processed food manufacturers can and not infrequently do change the formulations of their products. You may be eating something that used to be safe for you but is no longer gluten free.

I never got sick after I was diagnosed. I was glutened by cross contamination 3 times in 2 years. Gluten free paleo house. I don’t eat much outside of paleo so hardly ever anything processed. I don’t live in an area that has gluten-free options. I had gastritis and that’s why I had the endoscopy. They thought I had h-pylori and only way to find out was biopsy from endoscopy. It was completely unrelated to celiacs... but making a reference that the blunted villi was still existing even after 6 months which my doctor said could take time to heal. There was no new evidence of gluten and I had no inflammation.

[trents]

It often takes two years or more for the gut to completely heal after going gluten free. If blunting and symptoms persist after going gluten free and there has been sufficient time for healing, something else is causing the blunting. Recent studies reported by NIH have shown that the mile protein casein can cause blunting in some individuals and some medications can cause blunting as well.