With Celiac, Does Mucus In Stool = Intestinal Damage?

[Alphy]

Hi All,

 

For the past three months, I have had diarrhea every morning (sometimes overnight, early morning, then stops around 10AM). This got progressively worse with some cramping, and more and more mucus (sorry for TMI ) and tissue in my stool, along with some other symptoms (hip pain, fatigue). I met with a GI in mid April, and was tested for celiac, which was negative (5 blood samples were taken). I am scheduled for a colonoscopy this week, as I have a family history of polyps. Long story short, after meeting with GI a few weeks ago, my diarrhea and mucus etc. got progressively worse. I also started having some minor pain below my right rib and on the left side of my abdomen. This was very disturbing to me, and I decided if I was going to get any sleep before this colonoscopy that was 2 weeks away, I would feel so much better if I tried to tie my problems to my diet.

 

After reading about celiac, I was stunned at a few things, and felt that in fact Gluten may be the cause of my problems. So I stopped gluten last Monday. I am amazed at how different I feel. My stools have firmed up quite a bit, the minor pains have gone (but I am also stopping dairy). I do believe I am on to something, and am hoping that this is just a sensitivity since my blood tests showed negative.

 

There are a few things that I do wonder, and cannot find the answer anywhere. Would all of the mucus and tissue in my stool be indicative of small intestine damage? Or could this only be irritation? Secondly, is it possible to just have a sensitivity to gluten, meaning I avoid it at all costs, but no damage has been done? I have been trying to find out these answers and cannot find anything.

 

Obviously, I will know if there is a different cause of my problems once I have my colonoscopy this week, and I will have an opportunity to report to my GI about the gluten (or lack thereof!). Just wondered if anyone can give me any info on the disturbing things I was seeing in my stool before stopping gluten. It is really traumatic (but luckily no blood!).

 

Thank you for any help you can give. I will report back after talking to my doctor. One of my pet peeves is trying to research my symptoms online, to see someone with similar symptoms, and then they don't report back!!

[kareng]

While your having the colonoscopy, I would think he would do an endoscopy and samples at the same time. Even if its not Celiac, you might have something else going on that would show in an endo. A colonoscopy can't rule out Celiac.

[Alphy]

Thanks Karen. Do you know if the fact that I have only been off gluten for 1 1/2 weeks would negate any damage so he couldn't make a proper diagnosis? At this point, I have not talked to him, so I don't know if he will do an endoscopy. I just thought I would mention it beforehand. Sorry for the dumb questions. This is all new to me:( And maybe I just need to wait until Thursday to get my info. Just have had these burning questions, and this is such a helpful website.

While your having the colonoscopy, I would think he would do an endoscopy and samples at the same time. Even if its not Celiac, you might have something else going on that would show in an endo. A colonoscopy can't rule out Celiac.

[kareng]

MIght not be enough time to heal but eating gluten would make the chances of the GI finding it better.

[GFinDC]

Hey Alphy,

 

You can ask the GI to do the endoscopy at the same time as the colonoscopy.  That is going to save time and money for you since they only have one appointment to deal with and one anaestheia specialist to pay.  They need to take 4 to 6 biopsy samples of the small intestinal lining.  The biopsy samples are sent to a lab for microscopic review to check for damage to the villi.  It is much better for you to get back on gluten right away so the testing is somewhat accurate.  As you can imagine, your feeling better is related to a healing process in your body.   So if you are getting tested for the condition there may not be enough damage for them to find.  They can only see the first 5 or so feet of the small intestine in a standard endoscopy, and there are 22 feet.  So anything after that 5 feet is not known. Sometimes people wait to do the endoscopy months after they have gone gluten-free.  Then it is usually much harder because the have to eat gluten for 3 months possibly  to get enough damage to show up.  And eating gluten after being off it awhile is sometimes more symptomatic than before stopping it.

 

I have had tissue come out at times myself.  Usually just a very thin layer of cells. kind of white almost transparent.  Don't know if that is what you are talking about or not.  I've also had some bleeding at times.  My symptoms included other things of course.  But getting off the gluten was the key to starting to heal.  Celiac disease does cause damage to the small intestine.  Gluten intolerance may not cause that damage or may, they are still learning what it involves.  But  it is a different immune response so the tests for celiac disease won't show it.

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

By the way, welcome to  the forum!

 

[cavernio]

It is possible to be gluten sensitive such that should avoid all gluten anyways, but not have an endoscopy or blood test show damage. As far as it causing no damage at all, well, they're studying people who are non-celiac gluten sensitive to figure it all out. I can't imagine there's no damage if it makes you feel so crappy, maybe just not obvious villous damage. My current view of it all is that gluten sensitivity is just another facet of celiac disease, rather like neuropathy and dermatitis herpetiformis. To note, many people who are gluten sensitive will have one of their blood tests positive, but not an endoscopy...but it's not necessary to have any positive tests (besides your own testing via your diet) in order to be gluten sensitive.

 

I can't speak about bowel issues much, my own aren't all that bad despite intestinal damage that likely was along my entire small intestine. (They're actually rather worse these days being very strict, probably because I'm not eating all the grains and whatever type of fiber they have.)

[Alphy]

Thanks for all of the helpful information everyone. I had my colonoscopy today and had a chance to ask the doctor my question about mucus/tissue = intestinal damage. My colonoscopy went fine and he saw no evidence of any damage. He was even able to get a peek at my ileum/small intestine, although he wasn't able to go very far up. He did say that what I was seeing in my stool was not necessarily causing damage. In other words, even if I see it and it is scary as he$$, that is ok, and my body is okay! I told him about laying off the gluten (minus some inadvertent slip ups). He said it is very possible a sensitivity to gluten. 

 

So I will meet back with him in 4 weeks and in the meantime try to be very careful about gluten. Hopefully by then I was have a really good idea if gluten is indeed the problem. Hope this helps anyone in my same boat!

[GFinDC]

That's good news Alphy.  Did he do an ednoscopy?  An endoscopy is what they do to check for celiac disease.  They take biopsy sample from the small intestine to check for damage.

[Alphy]

That's good news Alphy.  Did he do an ednoscopy?  An endoscopy is what they do to check for celiac disease.  They take biopsy sample from the small intestine to check for damage.

No he did not do an endoscopy. The only biopsies from my understanding were from the large intestine. He really seemd to think since my blood test was negative, that it was not celiac sprue. It is so hard to tell by my symptoms! They are varying too much day to day. A couple of weeks ago they were almost formed! Could not believe my eyes. Now they are back to loose and I have that "feeling", sort of unstable if you know what I mean? So I don't know. I guess I will just keep plugging along with the gluten free and see what happens. The day before colonoscopy I only sipped Swanson's chicken broth. But I would think after my prep, that the chicken broth would be waay out of my system for now.

[GFinDC]

Well bummer then.  It's better fro them to do the endoscopy and colonoscopy at the same appointment.  It doesn't really matter if you have a formal diagnosis though.  If gluten has a bad affect on your body it's better to avoid it.  The ongoing inflammation and irritation in the gut that gluten causes can lead to lots of problems over time.   If you are having some improvement off removing gluten, then it seems your body doesn't like it. I don't know if you have read about NCGI, but it can also cause symptoms and there are no tests for it yet.

 

There is often a period of adjustment to the gluten-free diet.  Things can get better and then get worse for a while, kind of back and forth.  It takes time for the gut to heal.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

 

[Alphy]

I just wanted to give some more feedback on some info I found. Late last week the doctors office called to tell me my intestinal biopsies showed I have Lymphocytic Colitis, which is intestinal inflammation that is only visible by biopsy. I had never heard of this condition, even after months of searching the internet about clues as to what was causing my diarrhea. Interestingly enough, LC is very much connected to gluten sensitivity (among other food sensitivities). I am finding out (from a microscopic colitis forum) that people with LC do not normally test positive for celiac with blood tests as all of our antibodies are in our intestinal track rather than our blood.

 

In case anyone reads this post due to the subject line (mucus), I thought this may be of help to them. I don't hear much about copius amounts of mucus with celiac, or gluten sensitivity. But now reading about LC,it all makes sense. Since I have seen such great results keeping gluten out of my diet, I will stay off gluten 100%. I have energy! And today I had one of my first solid bowel movements. Hopefully this will be a help to someone out there who was having the same symptoms as me.

 

Thanks for the input everyone.

[powerofpositivethinking]

glad you are finding answers 

 

I just wanted to give some more feedback on some info I found. Late last week the doctors office called to tell me my intestinal biopsies showed I have Lymphocytic Colitis, which is intestinal inflammation that is only visible by biopsy. I had never heard of this condition, even after months of searching the internet about clues as to what was causing my diarrhea. Interestingly enough, LC is very much connected to gluten sensitivity (among other food sensitivities). I am finding out (from a microscopic colitis forum) that people with LC do not normally test positive for celiac with blood tests as all of our antibodies are in our intestinal track rather than our blood.

 

In case anyone reads this post due to the subject line (mucus), I thought this may be of help to them. I don't hear much about copius amounts of mucus with celiac, or gluten sensitivity. But now reading about LC,it all makes sense. Since I have seen such great results keeping gluten out of my diet, I will stay off gluten 100%. I have energy! And today I had one of my first solid bowel movements. Hopefully this will be a help to someone out there who was having the same symptoms as me.

 

Thanks for the input everyone.

[GFinDC]

Thanks for updating us Alphy.  The gluten-free diet is helpful for some people with Crohn's so it makes sense it could help with other conditions I think.The important thing is you feel better, and have  away to improve your health, by eating gluten-free.  Stick around and keep reading.  We have several threads on meal ideas and recipes that might be good.  Maybe some of it will appeal to you.