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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

    2. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    3. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

    4. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

    5. - KathyR37 posted a topic in Coping with Celiac Disease
      3

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,814
    • Most Online (within 30 mins)
      7,748

    ColbyBowlin
    Newest Member
    ColbyBowlin
    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

    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
×
×
  • 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.