Coloscopy

[skinnyminny]

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!

[AmandaD]

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

  skinnyminny said:

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]

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]

  skinnyminny said:

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. 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]

  skinnyminny said:

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]

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]

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.

[trents]

  cmom said:

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]

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 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]

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]

  SanteeBay said:

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]

  happygirl said:

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 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.