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

Recommended Posts

skinnyminny Enthusiast

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

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

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
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
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

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

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
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

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

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
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,

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.