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

Results Of Late Or No Treatment


Jala

Recommended Posts

Jala Newbie

I am 38 and just found out I have a wheat intolerance. I have not been tested for Celiac. I can see the progression of my symptoms from aversion to food, to buckling over cramping, to facial and eye swelling, to year long rounds of diarrhea, to brain fog, to chronic fatigue and more. All my symptoms immediately alleviated when I stopped eating gluten. I no longer have to read the same piece of paper 5 times, and my severe IBS is gone. I feel like a million bucks.

I know this is a hereditary disease and my father died of multiple sclerosis by age 43. I have also read about the links between celiac and MS. Does anyone know what happens if you are not treated? In particular, has anyone actually experienced or seen a link to MS?

FYI, my 11 year old nephew has already been in the emergency room twice for severe abdominal cramping and no detectable cause.

Thanks, Jala.


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



Celiac.com Sponsor (A8-M):



plantime Contributor

I don't know about the link to MS, but the untreated celiac dies an early, painful death.

Guest jhmom

Hi Jala, first I would like to say, I am glad you are feeling better after going Wheat Free. I also sorry to hear of your loss, 43 is very young to pass away.

I found these and wanted to share them with you...

MS and Celiac Disease

Here is also another link Diseases that may be linked to Celiac

You take care of yourself and hang in there! God Bless you and your family.

Karina Explorer

Interesting. Last year I had an MRI of the brain to check for MS as I had many MS symtoms. It was negative. I hadn't a clue as to what celiac disease was or what it involved and now I am diagnosed. I have had symtpoms a long time--probably all my life really. I hope I don't have something new to worry about now. I am gluten-free now, but only for two days so far. I know the more I learn about this disease the more motivated I am to do what I need to do. My advice is to find out for sure if you have it, or just go all the way gluten-free since you know you can't have wheat now anyway. Sorry I just checked and you are gluten-free--good :lol:

I am learning not to get carried away with all the possibilities of this disease because if I did I would be scared all the time...we have to live our lives and take care of our bodies. I am so sorry about your father, and that you have to deal with that in your family medical history, but worry can be damaging too......

Jala Newbie

Many thanks for the input. I worry about those who don't find out in time. Hope others can benefit from your info as well. Jala.

LUAP Newbie

THANK YOU STACIE FOR THE LINKS, IT ANSWERS SOME OF MY QUESTIONS ;)

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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,216
    • Most Online (within 30 mins)
      7,748

    Athenablue
    Newest Member
    Athenablue
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  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.