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):
  • Join Our eNewsletter:
    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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      348

      Terrible Neurological Symptoms

    2. - Aretaeus Cappadocia replied to Irishgirl5's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Digestive symptoms yet negative celiac screening

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

    4. - Scott Adams replied to Irishgirl5's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Digestive symptoms yet negative celiac screening

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,995
    • Most Online (within 30 mins)
      10,442

    Jody Booker
    Newest Member
    Jody Booker
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      I respectfully disagree, @Scott Adams.   Thiamine deficiency (and deficiencies in other B vitamins) can cause unintentional weight loss.  The body will use stored fat and muscle to provide energy in thiamine deficiency.  This results in muscle wasting, fat loss, fatigue, and difficulty putting on muscle mass.  Using stored fat and muscle for energy requires less thiamine than the amount of thiamine required to process carbohydrates.  Thiamine deficiency causes gastrointestinal Beriberi, a localized thiamine deficiency in the digestive tract, which results in dysbiosis, inflammation, and abdominal pain.  Carbohydrates can remain undigested in the intestinal system, which bacteria feed on, encouraging SIBO, and prompting dysbiosis, leaky gut, and inflammation.  Following a low carbohydrate Keto diet, like the AutoImmune Protocol diet, can help because it removes excess carbohydrates that the bacteria feed on.  SIBO can cause weight gain due to inflammational edema of the intestines (water retention in the tissues of the intestines), gas, and slowed transit times.  SIBO bacteria can absorb nutrients from your food before you can, resulting in additional deficiencies of other B vitamins and nutrients.   Thiamine deficiency is corrected with high dose Thiamine Hydrochloride, Benfotiamine and/or Thiamine TTFD (tetrahydrofurfuryl disulfide).  High dose thiamine in the form Benfotiamine has been shown to promote intestinal healing.  It improves "leaky gut".  High dose Benfotiamine will improve the gut microbiome in favor of beneficial bacteria.  Thiamine TTFD is beneficial for neurological issues.  Thiamine TTFD improves brain function and is beneficial for mental health issues such as depression and anxiety, and other neurological problems like Ataxia and Brain Fog.    Methylated (activated) B Complex vitamins help correct Thiamine deficiency because all eight B vitamins work together.  Vitamin C and the four fat soluble vitamins (A, D, E, and K) are needed as well.  Minerals like Magnesium, Calcium, Iron,  Potassium, and others may need to be supplemented as well.  Thiamine and Magnesium make life sustaining enzymes together.   Supplementing with high doses of Thiamine and other water soluble B vitamins will lower pain and inflammation, improve fatigue, improve muscle mass gain, as well as regulate the intestinal microbiome!  So, @Stegosaurus, you can get healthier while improving gut dysbiosis at the same time! References: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids https://pmc.ncbi.nlm.nih.gov/articles/PMC9147846/
    • Aretaeus Cappadocia
      You may know this already, but in addition to what you've described, you may also want to get a genetic test. About 1/3 of people have one of the genetic markers that are necessary (but not sufficient) for getting celiac. If your son is one of the 2/3 of people that don't have the marker then it is almost certain he does not have celiac. (The genetic test won't tell you if he has celiac, it can only tell you whether or not he is susceptible to getting celiac.)
    • JennMitchell79
    • Scott Adams
      That is really interesting, especially because it points to how the gut microbiome may still stay altered in celiac disease even after going gluten-free. The idea that a fiber like inulin could help feed beneficial bacteria and reduce inflammation is encouraging, although I imagine some people with celiac disease or other gut issues might still need to introduce it carefully depending on tolerance. It definitely feels like an area worth watching, because anything that could help support healing beyond just avoiding gluten would be valuable.
    • Scott Adams
      @Irishgirl5, it does sound possible for those numbers to fluctuate a bit, especially when they are near the upper end of normal, but ongoing symptoms still make it understandable that you are concerned. The fact that his tissue transglutaminase immunoglobulin A is still technically in range does not always make the picture feel any clearer, especially with tummy pain, nausea, constipation, and diarrhea still going on. Anxiety can certainly add to gastrointestinal symptoms, but I can see why you would not want to assume that explains everything. It sounds like keeping an eye on things and being cautious with diet changes makes sense, especially if symptoms continue. 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.
×
×
  • 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.