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

first PILLCAM test... very nervous... any advice

TaraZ

Recommended Posts

TaraZ Newbie
TaraZ
Posted

Scheduled to have the pillcam on Wednesday and I'm thinking of cancelling and rescheduling until after Christmas. I'm very nervous that this thing is going to get stuck and I'll end up having surgery ...

Right now I am scheduled to work a lot during the next 3 weeks because so many people are on vacation. I have been asking for more hours at work cause I need the money and they gave them to me. But I have a history of calling in sick and they don't trust me ... work is complicated but I wanted to prove I'm dependable so was planning on doing a banner job. Then I scheduled this for my day off not thinking much about it, just wanted to get it done. Now I'm sitting here reading all the horror stories of patients that had an obstruction and then emergency surgery so of course I'm now completely terrified to do this.  Even minor complications would not be good if they keep me from being able to work. Uggggg. I hate this. Also reading how the pillcam doesn't even work sometimes and might not be worth doing?

I am probably over thinking this and should just do it. My symptoms are chronic but fairly mild I think?  Symptoms include...

-loose stools (not diarrhea, just very loose) that are light brown in color and I've had this consistently (2-4 times a day) for about 1 whole year now. Have not had a regular hard stool BM in about 1 year.

-Tired!!! I am young(well 43) and fit and surf and windsurf and I even used to be a professional snowboarder. I am in very good shape but over the past 3 years I have become more and more tired. I have problems sleeping so at first I just ignored being tired. But it's gotten worse. On bad days I can do a little activity (30 minutes to an hour) of exercise and then I'm beat. That's extremely unusual for me but is happening more often.

-over the last year have experienced mild nausea after taking vitamins

-6 months of very possible DH! Started in Aug after eating gluten.

That's about it for symptoms. But hears the kicker... I have been gluten free (by choice, I know I'm crazy) for about 10 years now. So all my tests for celiac disease are coming back negative. The DH I mentioned is what started me down the road looking for a celiac diagnosis. Sorry this is such a long story. Again right now I'm just stressed about the pill cam. I'm reading about it and it's scary. I had a clean colonoscopy and then my endoscopy showed a small ulcer in my duodenum, neg biopsy of course. so next is the pillcam.  Thanks for taking the time to read this. Kinda feeling alone with all this.  

 

'

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I have heard from people on here that they worked well.  Never heard of any getting stuck

i don't know what your insurance situation is, but if you have met your deductible or still have " money" left to spend, it might be financially wise to get it done this year.

if you have been gluten-free for 10 years, these problems probably aren't due to Celiac disease.  It is a  good idea to find out what is wrong.

pikakegirl Enthusiast
pikakegirl
Posted

Understand, diagnosed 2007 and was too afraid to do cam but had endoscope which showed only 2feet undamaged small bowel. Just had pill cam done. I am so relieved because I am fully healed stomach and small bowel. Also had colonoscopy which was perfect. Relieved and surprised due to hard times last ten years. Tips, clean yourself ou as directed. I have a very slow system an after cleanse it take 5 days for me to have bowel movement so I too was afraid it would get stuck but it came out exactly 12 hours later. I used a large stainless stele bowel to catch my bm I was determined to make sure it come through. Be sure to wear cotton top with elastic pants because they put this corset like thing on you that you can not take off. Bending over is hard and chore nearly impossible because the wire and box on the side can swing and knock into things. Don't want to break them. It is easy to swallow with water, I was surprised. or me knowing and seeing the pictures helped me relax and feel confident in my choices over the years of healing and facing the test was worth it but trust your feelings, you are your best advocate.

cyclinglady Grand Master
cyclinglady
Posted

The risk for the pill camera getting stuck is extremely small.  That said, my niece was in the same position as you.  She was three days from getting on a plane to Europe with her family (including me).  I went with her on her visit.  I thought I would meet her GI.  Instead, it was for the pill camera prep.  My niece wisely chose to postpone the camera just before her huge trip.  This was a good decision because had there been any issues, her parents would have stayed home and it would have ruined (you know what I mean) the trip for the rest of us.  

She took the test the week she returned home.  The test went well, but it found that she had Crohn's Disease which was well out of reach for scopes.  She also did not have typical symptoms either.  She's glad she knows where she stands now.  

With your schedule, stress, etc., it might be wise just to postpone it.  But only you can decide as only you know your current health issues.  We knew that my niece wasn't super sick.  She might have an attack (she did on our last trip), but it was manageable.  

Even though you have been gluten free and had the other scopes, did they give you a complete celiac blood panel?  You might have thought you were gluten free, but not really.....it happens a lot!  

 

TaraZ Newbie
TaraZ
Posted
  • Author

Thanks Everyone! I'm doing the pillcam. I think I was just stressing out reading all the bad stuff online. I decided to talk to my boss and explain my situation. It was funny... he got so uncomfortable about talking about it he just let me have an extra day off and said if I don't feel good on Friday then just let him know...

I'm still a little nervous about the pillcam getting stuck and leading to problems but I'll try to not think about that. So today is my prep day, had a light breakfast and then just clear fluids from now on until 10pm. Tomorrow I take the pill. And then I have the next day off of work which is nice so I can make sure this thing passes. Thanks again for the replys. I was going to put it off but my insurance has a big deductible and also it would be good to get this done and over with. Somethings going on with me... I'm currently losing weight for no reason and I have been eating a lot. I usually gain weight when I eat like that. This happened about 2 years ago... I got really skinny and was tired all the time, not like me at all. Never figured out why. Went to the Dr and metabolic panal was always normal, thyroid normal, Normal B vitamins. I was under a lot of stress at the time so I eventually figured that was the reason. Now I'm getting skinny again. It's just like before. Anyway thanks for reading.

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. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    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

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.