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

Biopsy Results


Bookgirl32

Recommended Posts

Bookgirl32 Explorer

Second post this week, sorry. I got called with biopsy results. She didn't say the stage, just said that the villi are completely blunted every sample they took. She said it's one of the more severe ones she has seen in a while. She also had never heard of the "cracked mud" appearance (she's a nurse practitioner calling for the doctor), or she had heard of it but never seen it. She also said don't panic, go on the diet, and they'll watch for my levels to start falling. Should I be asking my GP to test other levels? Vitamin D, etc? Does this mean that the damage is so bad it won't heal? Or do I have as good a chance as any of healing? Three years ago I was gluten free for one month, and two years ago I was gluten free for two months, would that have started to heal and then gotten much worse again that fast? Or does that already mean I just don't respond to the gluten free diet? I'm scared now. Just so overwhelmed. I wasn't prepared for bad damage, etc. The doctor told my husband it probably isn't that bad all the way down into the small intestine because I would have much more severe symptoms if it was. Is that true? Or was he just trying to make us feel better? Or does he not know what he's doing? I'm afraid of so many things. Cancer, other auto-immune, refractory disease. How did you all make it through this?


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Don't freak out! You're going to be fine hon. Settle down & calm yourself. Really. I promise, it's going to be okay. Do you know that when splayed out, the small intestine will cover a tennis field? That's how much territory there is in there!!! Amazing isn't it? I am positive you have some villi working in there. There have been plenty who have had lots of damage & healed just fine. 

I am sure others will be on to talk about what vitamins you need to have tested. That isn't exactly my forte'. You should have the D checked, an iron panel done, B vitamins. 

I couldn't find anywhere that you stated your age. The younger you are, the faster you will heal. I'm betting you're in your 20's or 30's. That's plenty young enough. 

Bookgirl32 Explorer

41. But I love it when people think I’m younger, even online lol! Thank you for the pep talk. I am really prepared to do this right, I think it just felt like it was another surprise. 

Ennis-TX Grand Master

You should be fine, read over the newbie 101 section change out the house gluten free, and start eating easy to digest balanced whole food meals, remove dairy and avoid oats for awhile. I suggest crockpot liners and crockpot soups, with bone broth, stews, etc nice and soft nutrient dense meals. Digestive enzymes and probiotics can help you to maximize your nutrition from your food and boost your healing. I will bet if you stick to the diet you will have almost completely healed ina year or two. The Chances of complications like cancer and lymphoma drop dramatically once you start the diet and stay away from gluten. You might have some other intolerance issues crop up so keep a food diary and record what you and and how you prepare it for now. Somtimes you will find you will have to remove some tough foods, or spices for a bit til you heal.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

squirmingitch Veteran

Ennis gives good advice. I was in a rush yesterday so sort of answered & ran. On the Bone Broth..... Google how to make it. Don't buy the stuff in a can, make your own. That stuff is your best friend for a while. I can not emphasize that enough. Bone broth is really gentle on your digestive system & yet it is unbelievably nourishing and will go a long way toward helping your gut heal.

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. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

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

      Probiotics

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

      New here

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

      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):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • 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.):    
×
×
  • 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.