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 Our Content
    eNewsletter
    Donate

other issues associated with celiac


MADMOM

Recommended Posts

MADMOM Community Regular

i have been been reading lots of blogs and articles on google about all these liver / gallbladder/organ issues associated with celiac and just wondering if this is something super common or “can happen if untreated”?  so many things i read are scary and i had checked my liver pancreas and gallbladder prior to dx and also had an almost perfect cbc panel a month before dx as well - thyroid and liver enzymes and levels all normal.  so my question would now be - do i still risk having damage to these organs if i’m gluten free now?  i’ve been on this journey 4 months almost and i’m so terrified that something bad will happen 


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



Celiac.com Sponsor (A8-M):



trents Grand Master
(edited)
11 hours ago, MADMOM said:

i have been been reading lots of blogs and articles on google about all these liver / gallbladder/organ issues associated with celiac and just wondering if this is something super common or “can happen if untreated”?  so many things i read are scary and i had checked my liver pancreas and gallbladder prior to dx and also had an almost perfect cbc panel a month before dx as well - thyroid and liver enzymes and levels all normal.  so my question would now be - do i still risk having damage to these organs if i’m gluten free now?  i’ve been on this journey 4 months almost and i’m so terrified that something bad will happen 

Elevated liver enzymes is what led me to a celiac diagnosis almost 20 years ago. I had mildly elevated liver enzymes for about 13 years before that and primary care docs tested me for various kinds of hepatitis and this and that but those tests were all negative. This was going on from late 1980's to early 2000's when very little was known about celiac disease and very few docs even knew what little information on the disease there was. Finally, a GI doc tested me for celiac antibodies and I was positive and soon had a endoscopy/biopsy and that was positive. By that time I had some mild symptoms and other lab values (like iron levels and albumin and total serum protein) were getting out of whack. Within three months of eating gluten free (or close to it) my liver enzymes had normalized and there is no sign of liver disease or any permanent damage. The liver is very resilient and can take a lot of abuse. What we know now is that about 18% of celiacs have elevated liver enzymes before eliminating gluten from their diet. We also know that it typically takes many years after the onset of celiac disease before there is a diagnosis so my 13 years of living with it is more common than not. A big reason for that is that so many people are largely asymptomatic for years after the onset of the disease. Hopefully, average time between onset and diagnosis is getting shorter now that there is more awareness in the medical community about celiac disease. But I don't think it has changed that much up to this point.

MADMOM, I wouldn't worry about what hasn't happened. The old saying is true. 80% of the things we worry about never materialize. Don't add this additional stress to all the celiac disease related adjustments you are now making.

Edited by trents
MADMOM Community Regular

you are right - my logic is that things were pretty normal prior to dx and now that ive started on this gluten free journey i should only be getting healthier 🙏🏻❤️

Scott Adams Grand Master

The good news is that most of the negative risks and side effects associated with celiacs who eat gluten will go away once they are gluten-free. It may take a while, but if you maintain a gluten-free diet for years the risk of getting other disorders and conditions associated with it are greatly reduced, and many of the issues caused by gluten will go away after time. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - PixieSticks replied to PixieSticks's topic in Super Sensitive People
      2

      Working in a kitchen with gluten?

    2. - BoiseNic replied to BoiseNic's topic in Dermatitis Herpetiformis
      11

      Skinesa

    3. - knitty kitty replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Feeling ill

    4. - Scott Adams replied to Brianne03's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Advantages vs. Disadvantages of having an official Celiac diagnosis

    5. - Scott Adams replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Feeling ill


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,525
    • Most Online (within 30 mins)
      7,748

    MaddieJoy05
    Newest Member
    MaddieJoy05
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • PixieSticks
      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply. 
    • BoiseNic
      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It is gluten and dairy free also. 
    • knitty kitty
      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
    • Scott Adams
      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
    • Scott Adams
      You could go gluten-free now, and then start eating lots of gluten for at least 2 weeks before your endoscopy--just be sure to tell your doctor about this beforehand. If your symptoms go away on a gluten-free diet, it is further evidence of celiac disease and/or non-celiac gluten sensitivity.  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...