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

Capsule


Mgyoung77

Recommended Posts

Mgyoung77 Apprentice

My doctor wants me to do a capsule. He didn't even tell me what it was let alone why he wanted me to do it. I have researched and now know what it is. I also know it is to see what damage has already been done. What is he going to do with this information. Is it worth the money and time that it will take?


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Most damage, to my knowledge is microscopic, however in some cases "scalloping" of the intestines can be seen.

LauraB0927 Apprentice

I recently had the capsule test done in November and I definitely think it was worth it - but my insurance did cover it. My endoscopy only showed "curling" of my villi, but the capsule test showed that I actually had much more significant damage than we had all thought - more than half of my small intestine has no villi whatsoever. Its a more comprehensive picture (literally) of where the damage is located and how severe it is, because the endoscopy cant get far enough and only takes about 4-8 biopsies, which isnt a lot given that you're small intestine is about 20 feet long. They printed out pictures for me and you can CLEARLY see the areas that have lots of beautiful little villi and the ones that dont, are scalloped, and have a cobblestone/mosaic pattern. It also rules out bleeding and masses. The capsule is about the size of a multi-vitamin so its not incredibly large. The only inconvenience is the fasting before the procedure, but the rest is fine, you only have the leads (wires) on for 8 hours. I have to get another done in about 3 months to see if I made any progress.

If your insurance covers it, I'd definitely say go for it - you'll get a TON of more information of whats going on inside.

Mgyoung77 Apprentice

Thank you for the information. Is there anything the doctor can do about the damage he sees? I have it schedule for the 28. We already met our deductible so I want to squeeze it in this year. My other concern is my iron. A couple days before I found out I was celiac, I found out my hemoglobin was 5.4. This past Monday it was up to 9, which is still low but a huge improvement. It's only been the last couple days that I've felt like I had enough energy to get anything accomplished. I don't want to go back to being so tired. I have a lot that needs to be accomplished right now.

mushroom Proficient

Thank you for the information. Is there anything the doctor can do about the damage he sees?

Not with the camera which only passes through. It helps him make a more accurate diagnosis and a better treatment plan, depending on what he finds.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Nancy N Rosen
    Newest Member
    Nancy N Rosen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.