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

Coloscopy

skinnyminny

By skinnyminny
in Related Issues & Disorders

Recommended Posts

skinnyminny Enthusiast
skinnyminny
Posted

I was at a celiac support group meeting last night and they were sayin celiacs need to have a colonoscopy every 2 years. I am only 19 years old, and I was wondering if anyone knows if this is necessary for someone my age, they were shocked to know I have NEVER had one.. please if anyone has any information about this let me know!

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

Celiac.com Sponsor (A8-M):


AmandaD Community Regular
AmandaD
Posted

I have celiac diagnosed by small intestinal biopsy and my doc has never recommended follow up colonoscopies (I originally just had a sigmoidoscopy)...Celiac doesn't affect the colon, persay, it's the small intestine. I think you occasionally may need a follow up small intestinal biopsy or EGD to check to make sure you are healing if you were having continuing symptoms...

A

I was at a celiac support group meeting last night and they were sayin celiacs need to have a colonoscopy every 2 years. I am only 19 years old, and I was wondering if anyone knows if this is necessary for someone my age, they were shocked to know I have NEVER had one.. please if anyone has any information about this let me know!
skinnyminny Enthusiast
skinnyminny
Posted
  • Author

That sounds right to me I was diagnosed 5 years ago and have had no follow up work other than a few check ups.

ravenwoodglass Mentor
ravenwoodglass
Posted
I was at a celiac support group meeting last night and they were sayin celiacs need to have a colonoscopy every 2 years. I am only 19 years old, and I was wondering if anyone knows if this is necessary for someone my age, they were shocked to know I have NEVER had one.. please if anyone has any information about this let me know!

Celiacs can have a higher rate of adenocarcinomas and other cancers of the GI tract, but I believe this happens mostly with those of us who are undiagnosed for an extended period of time. Are you sure they said a colonoscopy and not a endoscopy? I could understand GI doctors wanting to do a endo every couple of years, to check if the villi are still healed, after all they don't get much money from us once we are dietary compliant and aren't sick anymore. <_<:D This is not something I would worry about unless your personal GI specialist said you need it for some reason, like for example you were not getting better on the diet.

IrishKelly Contributor
IrishKelly
Posted
I was at a celiac support group meeting last night and they were sayin celiacs need to have a colonoscopy every 2 years. I am only 19 years old, and I was wondering if anyone knows if this is necessary for someone my age, they were shocked to know I have NEVER had one.. please if anyone has any information about this let me know!

I am now 28, and i had a partial-colonoscopy (not all the way through the entire intestines, just up to the colon...which didn't require sedation) and that was when i was 24, and I haven't needed one since. I have to say, your advice on this topic/issue is only as accurate as the person your getting your answers from. My point of view?? Why on earth would you allow a doctor to invade your intestines every two years when you know that the diet is working? You will heal fine so long as you stick to the diet and pay attention to any other food intolerances (especially as young as you are...knowing that the risks of cancer, etc. are minimal because the damage is only minimal due to your age). I personally feel it's being a little to over cautious to go every two years for a colonoscopy.

On another note, have you started to take any natural supplements to progress your healing process? L-Glutamine and Digestive Enzymes will help to heal you in half the time. They are not only available in a health food store, but they are over the counter in many other stores (although i do reccommend buying them from a health food store for risk free purposes ;) )

happygirl Collaborator
happygirl
Posted

I must say, I've yet to hear of anyone recommending a colonoscopy every two years. Like it was mentioned before, the correct procedure to check for damage is an endoscopy, which checks the small intestine.

If they were in fact referring to an endoscopy (EGD), the "old" thinking used to be that follow up biopsies were necessary. Now, that is not the case.

Taken directly from Dr. Fasano's website (a leading Celiac researcher and physician) Open Original Shared Link

Do I need to repeat the biopsy once on a gluten-free diet?

If you are diagnosed based on positive serology and biopsy, and your symptoms improve once on a gluten-free diet, you do not need a follow-up biopsy.

The problem is that "old" thinking is hard to change. Many Celiacs who have had it for a long time have not caught up on recent research and continue to pass out information that came out long ago.

Many Celiacs were diagnosed on bloodwork alone---you will find many on this board. Heck, many Celiacs did not do bloodwork OR biopsy, but know that they do better without gluten in their diet.

So, unless you are having problems, then "usually" followup biopsies are not needed. Usually the first step, even if there are problems, is to run the bloodwork again.

Hope this helps clear things up. Does this help answer your question?

cmom Contributor
cmom
Posted

I have the celiac panel and small bowel series with follow-through every 3 years. I believe I am due in 2007 again. However, I am thinking of rejecting the small bowel series because the barium I have to drink may contain gluten. If I am mistaken about this, anyone may speak up to correct me.

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
I have the celiac panel and small bowel series with follow-through every 3 years. I believe I am due in 2007 again. However, I am thinking of rejecting the small bowel series because the barium I have to drink may contain gluten. If I am mistaken about this, anyone may speak up to correct me.

I had a CT of my abdomen recently with contrast, i.e., had to drink the barium milkshake. I inquired about it containing gluten on the day I scheduled the appointment. The radiology tech researched it and the next day had the info that it was gluten free. So, make sure you ask and get them to check it out.

Steve

happygirl Collaborator
happygirl
Posted

cmom,

do you mind if i ask why you are having the barium/follow through? to check for other issues/maintenance (to make sure everything else is ok...no complications), I'm assuming, since it isn't used for Celiac testing. Wow-every three years---you are a better person than me :P I can handle lots of stuff...drinking that stuff was not one that went over well with me!!!

Due to non-celiac health issues, I had one this spring. I apparently wasn't her first Celiac and she knew that it was gluten free! So, I would recommend calling beforehand to have them verify it...but it looks like, at the very least, there are 'brands' of the stuff that are safe.

Hope this helps.

Laura

SanteeBay Rookie
SanteeBay
Posted

I am 43 and was diagnosed 3 weeks ago. Positive blood and positve biopsy. I saw my doctor today and he wants me to have another endoscopy in 6 months, but I don't have to have another colonoscopy until I am 50 (WhooHoo!) You are lucky you found out when you are so young, unlike a lot of us who have felt terrible our whole lives and didn't know why..

Lisa Mentor
Lisa
Posted
I am 43 and was diagnosed 3 weeks ago. Positive blood and positve biopsy. I saw my doctor today and he wants me to have another endoscopy in 6 months, but I don't have to have another colonoscopy until I am 50 (WhooHoo!) You are lucky you found out when you are so young, unlike a lot of us who have felt terrible our whole lives and didn't know why..

SanteeBay:

We have a lots of stories, a lot of histories and every one who posts here has a personal history. Many are know by us, who have been here a long time, and may suffer in silence. Do you reallty thing that we have not all walked in your shoes? <_<

"Lucky that you have found out...". I am glad that you found out why you were feeling so bad and happy that you have a conclusion.

There are some people here that have very serious side effect from un dx's celiac. Many are my friends and they are not so lucky.

Count you blessings, trust me. :)

cmom Contributor
cmom
Posted
cmom,

do you mind if i ask why you are having the barium/follow through? to check for other issues/maintenance (to make sure everything else is ok...no complications), I'm assuming, since it isn't used for Celiac testing. Wow-every three years---you are a better person than me :P I can handle lots of stuff...drinking that stuff was not one that went over well with me!!!

Due to non-celiac health issues, I had one this spring. I apparently wasn't her first Celiac and she knew that it was gluten free! So, I would recommend calling beforehand to have them verify it...but it looks like, at the very least, there are 'brands' of the stuff that are safe.

Hope this helps.

Laura

I have the barium/follow through to make sure I haven't developed any lymphomas or other problems. The last time I went in for one I already wasn't feeling well. Afterward, I became very sick. The hospital was about 45 minutes from my home. I had it coming out of both ends before I made it there. That's one reason I thought maybe the info I had was right about it containing gluten. I have wondered if it's really necessary though.

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless...
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system?
    3. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note:...
    5. Scott Adams
      0

      Homemade Gluten-Free Egg Drop Soup

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,844
    • Most Online (within 30 mins)
      7,748
    donnawebb265
    Newest Member
    donnawebb265
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
×
×
  • 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.