Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Endoscopy/colonoscopy


ksymonds84

Recommended Posts

ksymonds84 Enthusiast

When I first thought I had a problem I went gluten free first then did the blood test which was negative. I didn't do an endoscopy because well to be honest I was a big chicken! I settled for the gluten intolerance based on dietary response diagnoses. As some may remember, I started doubting my diagnoses because I still wasn't completely better by last spring after being over a year gluten free. I tried gluten challenging May and June but had to stop in July because I couldn't handle the discomfort any longer. I forked out money for Enterolab which was positive for gluten intolerance and showed I carried both main celiac genes so feel that it was worth it. I still felt like something else could be wrong so I saw a GI who specializes in celiac and he convinced me to do the colonoscopy and endoscopy together. I was a nervous wreck but had it done yesterday. Let me tell you, other than the prep the day before, it was a piece of cake! I don't remember a thing about it! I don't even remember the Dr. coming into my room to discuss his findings! My husband had to tell me everything he said. My colonoscopy was clean as a whistle (I had a fear of polyps ect). My endoscopy showed patches of redness and inflammation that he did a biopsy but told my husband was celiac related but no real damage or suspicions of cancer etc. So I've been worrying over nothing and wish I would have just done the tests in the beginning. If I would have been alert I would have asked him if the inflammation could have been caused by the two month gluten challenge or if I am just slow healing since I discovered this in my 40's. I am gluten free over 1 1/2 years minus the two month challenge. If anyone has opinions on this please let me know. The only side effects that I am experiencing is that my throat seems tender but not painful. Also thought I would share for those that fear these procedures like I did.


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



Celiac.com Sponsor (A8-M):



zero Newbie

For my endoscopy/colonoscopy the doctor noted inflammation in the stomach. He said that this can be caused by all of the laxatives taken to prep for the colonoscopy. My experience was similar to yours -- it was just about the easiest medical test I have ever had.

ksymonds84 Enthusiast
For my endoscopy/colonoscopy the doctor noted inflammation in the stomach. He said that this can be caused by all of the laxatives taken to prep for the colonoscopy. My experience was similar to yours -- it was just about the easiest medical test I have ever had.

yes, I too had infammation in my stomach as well as several patches in my upper intestine. I'm sure the laxatives did a number on my stomach. I don't see myself drinking orange gaterade any time in the near future ;)

ang1e0251 Contributor

Since you didn't mention the inflammation was in your stomach I will assume it was small intestine. Yes, it is from your challenge. That's exactly why the doc's want you to challenge before a procedure. Luckily you still showed damage for you test even though you stopped your challenge. That also shows you that you are a slow healer so it's no surprise it took you so long to feel better. You could still have other food sensitivities as you noted yourself but now you know the good news of what you don't have. Now you can refine your diet to feel great!

ksymonds84 Enthusiast
Since you didn't mention the inflammation was in your stomach I will assume it was small intestine. Yes, it is from your challenge. That's exactly why the doc's want you to challenge before a procedure. Luckily you still showed damage for you test even though you stopped your challenge. That also shows you that you are a slow healer so it's no surprise it took you so long to feel better. You could still have other food sensitivities as you noted yourself but now you know the good news of what you don't have. Now you can refine your diet to feel great!

Thank you for responding. I did have inflammation in my stomach but also in various patches in my upper small intestines. He showed my husband pics of where he took biopsies (he showed me as well but don't remember!). I think you are right and I am a slow healer! I wish I would have known about Celiac 20 years ago but feeling better everyday now.

lonewolf Collaborator
As some may remember, I started doubting my diagnoses because I still wasn't completely better by last spring after being over a year gluten free.

Just something to keep in mind - if you're still not getting better with gluten-free alone, you might want to consider trying the Specific Carbohydrate Diet. It's a bit more challenging, but it's also not necessarily for life - just until all the symptoms are gone for a while.

grainfree Newbie
When I first thought I had a problem I went gluten free first then did the blood test which was negative. I didn't do an endoscopy because well to be honest I was a big chicken! I settled for the gluten intolerance based on dietary response diagnoses. As some may remember, I started doubting my diagnoses because I still wasn't completely better by last spring after being over a year gluten free. I tried gluten challenging May and June but had to stop in July because I couldn't handle the discomfort any longer. I forked out money for Enterolab which was positive for gluten intolerance and showed I carried both main celiac genes so feel that it was worth it. I still felt like something else could be wrong so I saw a GI who specializes in celiac and he convinced me to do the colonoscopy and endoscopy together. I was a nervous wreck but had it done yesterday. Let me tell you, other than the prep the day before, it was a piece of cake! I don't remember a thing about it! I don't even remember the Dr. coming into my room to discuss his findings! My husband had to tell me everything he said. My colonoscopy was clean as a whistle (I had a fear of polyps ect). My endoscopy showed patches of redness and inflammation that he did a biopsy but told my husband was celiac related but no real damage or suspicions of cancer etc. So I've been worrying over nothing and wish I would have just done the tests in the beginning. If I would have been alert I would have asked him if the inflammation could have been caused by the two month gluten challenge or if I am just slow healing since I discovered this in my 40's. I am gluten free over 1 1/2 years minus the two month challenge. If anyone has opinions on this please let me know. The only side effects that I am experiencing is that my throat seems tender but not painful. Also thought I would share for those that fear these procedures like I did.

Thanks for the post. I fear the endoscopy procedure less than the preparation needed for it - gluten-inclusion diet. To cut through the myriad unknowns of what to eat I am seeking a diagnosis. The symptoms are wreaking havoc and a medical diagnosis will hopefully ease worries. Seems like an eternity away from today but. There you go.


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



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748

    nursengul
    Newest Member
    nursengul
    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
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...