Jump to content

  • 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

Worried About Endoscopy/colonoscopy

BlessedTXMom

Recommended Posts

BlessedTXMom Newbie
BlessedTXMom
Posted

I have suffered from diarrhea from about 11 years now. Going off of diary helped so I guess I am lactose intolerant. Did a gluten free diet (mostly) this January - March and it helped even more. I have been eating some gluten this then but not a lot because of the pain, cramping, and diarrhea. Now I have an endoscopy and colonoscopy next Thursday. I am worried that I have not eaten enough gluten for the test to be accurate. In the past week I have only had 4 pieces of pizza, 4 cookies, and a hamburger bun. I am not careful to see if there is hidden gluten in things. I know that I should eat more for the test but it is hard when you know you will suffer for it.

The colonoscopy should show colon damage from celiac if I have it - is that correct? Or will the endoscopy show the damage? If there is no damage then I don't have it and am just sensitive. They will do a biospy also.

Ug! I want some answers and am afraid that I will end up with a negative biospy and the sensitivity label.

Any advice?

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Damage from celiac disease will show up in the small intestine via the endoscopy. It is prudent to also do a colonoscopy in case there is a different, or additional problem. The colonoscopy is typically normal when celiac disease is the cause.

The more samples that are taken for biopsy the better. A small number increases the chance that damage to the villi may be missed, leading to a false negative. Often the damage is in patches.

There is also a chance that some healing has taken place on the gluten-light diet. Whether that will happen in your case is uncertain. It varies greatly from person to person.

love2travel Mentor
love2travel
Posted

First of all, welcome here! There are so many incredibly helpful and knowledgable people here with years of experience.

Unfortunately it is advised to eat the equivalent of 4 slices of bread each day for three months prior to biopsies for accurate results (the gastroscopy or endoscopy show this - the colonoscopy is to rule out other problems most likely as it was with me). Admittedly it was easy for me as I do not feel sick from eating gluten (which is both a blessing and a curse). But with many folks it is very difficult so they may recommend going gluten-free without having the stress and pain from eating all that gluten when you know very well it will cause suffering.

This week I also heard from a leading celiac disease expert that only 39% of biopsies are done correctly in Canada (unsure of the stats in the US). We are to have 8-11 biopsies as opposed to the usual 3 so perhaps you could request that if you proceed. Many people out there have been told their biopsies were negative so they believe they do not have celiac disease when in reality they do (due to poor biposies). Very sad.

:(

All the best - really.

BlessedTXMom Newbie
BlessedTXMom
Posted
  • Author

Thank you for the quick replies. I have been reading lots here! Great resource. There is no way I could go back on gluten for 3 months prior to a test. I would suffer too much. So I will just take the test next week and see what happens. I guess I can go get my favorite pizza this weekend! Regardless of the outcome I will try to be as gluten free as possible in my life here on out. But I do like to cheat and eat pizza or cookies sometimes. I just don't want to be damagin my instestines by doing so. I was hoping a test could tell me if I could occasionally cheat or not. The thought of no gluten for the rest of my life is horrible - I LOVE BREAD and baking. But I do feel so much better off of gluten.

Are there members here who "cheat" and eat gluten even knowing that they will suffer for it?

love2travel Mentor
love2travel
Posted

Although I do not feel sick from eating gluten I would never, ever consider cheating because I know what is going on inside. I also think of my future and will do all I can to avoid other auto-immune diseases and cancer. Did you know that those with undiagnosed celiac or celliacs who do not follow a strict gluten-free diet have a four times higher mortality rate than other people? As I do not feel ill it is sometimes difficult to be motivated to be so incredibly strict. When you love bread and baking (I do, too) it is doubly hard. Many people cannot quite grasp my obsession with cooking and baking. It is a HUGE chunk of my life. It was incredibly difficult to come to terms with never, ever having really good bread, pastry, fresh pasta, etc. ever again. I do continue to bake, however; gluten-free quick breads, cakes and cookies are very simple to make with easy substitutions. Those things that require yeast are not so great. They are ok but lack the elasticity, stretch and chew that comes with gluten (especially pasta and bread). I've been experimenting a lot with psyllium fibre and other things.

BlessedTXMom Newbie
BlessedTXMom
Posted
  • Author

But if I follow a strict gluten free diet is eating a good dessert or bread once a month really going to do that much damage? I guess I don't see how it is going to really harm me in very small amounts compared to everything else I am eating.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

I'm in a sort of similar situation. I have a gastro appt June 15 when I'm going to talk about celiac and then either get tested and go gluten-free or skip testing and go gluten-free, but since I know I need to eat gluten for the testing, I'm trying to keep my diet the same, and it makes me so sick to eat wheat. I'm having a really hard time eating things I know make me feel bad. I'm trying to get my fill of gluteny favorites to make it easier, but my appetite is half what it used to be because I feel so crappy.

One thing I'm looking forward to going gluten free is the baking! I love to bake but I'm excited to become the best gluten free vegan baker ever ;) it's a whole new world of baking to use gluten-free flours, and I'm excited to learn something new when my brain defogs.

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

Celiac.com Sponsor (A8-M):


love2travel Mentor
love2travel
Posted

I'm in a sort of similar situation. I have a gastro appt June 15 when I'm going to talk about celiac and then either get tested and go gluten-free or skip testing and go gluten-free, but since I know I need to eat gluten for the testing, I'm trying to keep my diet the same, and it makes me so sick to eat wheat. I'm having a really hard time eating things I know make me feel bad. I'm trying to get my fill of gluteny favorites to make it easier, but my appetite is half what it used to be because I feel so crappy.

One thing I'm looking forward to going gluten free is the baking! I love to bake but I'm excited to become the best gluten free vegan baker ever ;) it's a whole new world of baking to use gluten-free flours, and I'm excited to learn something new when my brain defogs.

The flours/starches are interesting to work with. My freezer holds 17 kinds! It is fun experimenting - I just wish they created the same texture/consistency as gluten but there simply is no such thing, sadly. But coconut and almond flours in cakes, cookies, quick breads and so on are wonderful!

Jestgar Rising Star
Jestgar
Posted

But if I follow a strict gluten free diet is eating a good dessert or bread once a month really going to do that much damage? I guess I don't see how it is going to really harm me in very small amounts compared to everything else I am eating.

The immune system is a cascade; you turn it on a little and it turns on a lot. Think of a giant stack of champagne glasses - you drop something on the top one and you will smash all the glasses.

So for every "treat" you are covering your immune system with smashed glass (or at least it will feel like it).

love2travel Mentor
love2travel
Posted

It can take as little as 1/70th of 1 piece of bread to cause damage!! :o

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
    2. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    3. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    4. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
    5. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.