Worried About Endoscopy/colonoscopy

[BlessedTXMom]

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?

[psawyer]

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]

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]

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]

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]

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]

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.

[love2travel]

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]

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]

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