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 Celiac.com!
    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?

Link to comment
Share on other sites

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. 

Link to comment
Share on other sites
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. 

Link to comment
Share on other sites
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/

 

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,987
    • Most Online (within 30 mins)
      7,748

    happydays
    Newest Member
    happydays
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • TessaBaker
      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    • Celiac16
      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes which would be a better indication if I was deficient or dependent on it but everyone dismisses it (there are know genetic mutations where you need to take it daily for life). I have looked into Thiamine Responsive Megablast Anemia and I have a lot of the more mild symptoms of the disease that manifest when thiamine isn’t given to the patient such as optic neuritis… I just find the parallels interesting. i think that celiacs could be a side issue of inflammation that resulted from vitamin deficiencies. I was eating a lot of sugar leading up to my diagnosis and since eating gluten free didn’t make me feel much better, I’m wondering if this was more the underlying issue (sugar heavily depletes b1). I usually take 1.5g thiamine a day.
    • Fluka66
      Thank you for your welcome and reply.  Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen. However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system.  So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific.  Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem . Wondering what damage has been done over the years. Many thanks for your reply. Wishing you the very best.    
    • trents
      Welcome to the forum community, @Fluka66! Did you realize that the vast majority of all canned soups use wheat starch as a thickener, including such common commodities as Campbell's tomato soup?
    • Fluka66
      Hello. Any help would really steady my nerves right now. I realised recently that certain food left me in agonising pain so eliminated from my diet. I also have a swollen lymph node. My very caring Dr did some blood tests and I went back the other day to see another equally caring Dr . She looked at the test results one result has come back with something wrong. It came very fast so I'm afraid I didn't catch what it was. Anyway the urgent referral to ENT. She did say as I had already eliminated gluten it wouldn't say anything on the results and neither Drs nor I were prepared to reintroduce gluten . I've just had some tomato soup and again in agony only thinking this must have aggravated maybe existing problems. Does anyone know what I'm facing now ? My swollen lymph node , pain when eating gluten and lactose and I'm assuming the acidity of tomatoes triggering pain.  I'm trying to stay calm and to be honest I've been in intolerable pain at times rendering me unable to stand up straight but I've always just got on with it . Guess I'm reaching out and would really appreciate any wise or unwise words at this stage. Wishing you all the very best as you live with this illness. Fluka66  
×
×
  • Create New...