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

New...and A Question


Hippie

Recommended Posts

Hippie Newbie

I was just diagnosed...and because I have a bad doctor that didn't tell me much, and I can't figure it out looking anywhere on the internet...will this ever go away? Or am I stuck with this for life?


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



Celiac.com Sponsor (A8-M):



fedora Enthusiast

I am sorry for your frustration. You have arrived at a good place. Welcome. Were you diagnosed with Celiac Disease? If you were, this is lifelong. I am sorry if this upsets you. There are many wonderful people here willing to help you figure it all out. There are also books, magazines, etc.

This is where the real experts are- the ones who are living with it. Good luck, May your healing begin!

home-based-mom Contributor
I was just diagnosed...and because I have a bad doctor that didn't tell me much, and I can't figure it out looking anywhere on the internet...will this ever go away? Or am I stuck with this for life?

No, this will not ever go away. It's unfortunate that you have a bad doctor - read for a bit in this forum and you will discover that you are not alone in that one!

This forum is a God send for information and support. Hang out here and you will learn so much.

This may sound harsh, but the whole transition will be much easier for you if you if you ditch the victim mentality. You were stuck being sick and now you know what was wrong. There is a way to make yourself well again and you can do it. There is a learning curve and you will fall as we all have, but we learn and we get better and eating well gets easier. You are now in control of what you eat and have taken the first steps to getting your health back.

Choose to eat healthy - the pre-packaged, over-processed, preservative-laden American isn't healthy for anyone.

Gluten-free eating does not have to be boring. The other night we had lasagna and chocolate cake - all gluten free! :)

Welcome!

Kilika Newbie

I'm sorry to say, but as far as I know any research I've done says you gotta go gluten-free for life. Kinda like needing insulin for life as a diabetic. That's how I understand it, can others confirm??

flourgirl Apprentice

Celiac isn't exactly like Diabetes....you don't have to conastantly monitor your body sysems! All you have to do is to be careful.....oh, so careful......of what it is that goes into your mouth! The initial healing may take a while...depending on just how sick you are. Patience, and trust, and feel free to lean on any of these wonderful, helpful people who have been there, done that. If you're lucky, gluten may be your only concern. Many have Diabetes as well as Celiac...a very good many have other intolerances as well and have to be doubly vigilant about their foods.

Celiac is more like a LIFE Sentence....in that you must eat healthy. You can eat junk foods, just not gluten foods. The less processed the better. That is true of everyone, I wish I could get all of my loved ones to eat simpler, more natural foods for better health.

Anyway...attitude is a lot of it. Changes may get you feeling down..there is depression that comes with Celiac, but improves with health. If you do your best to look at it all with a positive attitude, it will all go better for you. Get as much info. as you can and just keep trying. Good luck and good health to you!

happygirl Collaborator

Celiac is a life-long condition.

I recommend www.celiacdiseasecenter.columbia.edu and www.celiaccentral.org for more information (besides this site!)

Glutina Rookie

Hi!

I know that this might seem like an obvious question...but have you thought of switching doctors or getting a second opinion..or going to a G.I. specialist? You should never feel like you have to be stuck with a bad doc. I have personally been lucky enough to a have a WONDERFUL doc who referred me to a great specialist, but am realizing after joining this forum that this is not the case for many! This is your life and YOUR health, and you get to choose who helps keep you healthy....docs included!

-Glutina


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



Celiac.com Sponsor (A8-M):



Hippie Newbie

Well I have had really bad pain and uh...digestive problems...I'll just call it that? That hit me out of nowhere. Plus I've been sleeping for about 12 hours a day. And I have no energy. This has been going on a for a couple months. First my doctor told me to cut out dairy. I did that and didn't get better. Then they diagnosed me with IBS and gave me pills for that, called bentyl. That didn't help either. It jst kept getting worse. Then I ended up in the hospital. And they still never gave me a GI or a CT scan or anything. They just took my blood and a stool sample and they said everything was fine. They told me to try cutting out wheat, so I've just been eating fruit, vegetables, meat, and corn tortillas for the past couple weeks, and I feel a little better, so my doctor told me this is it. But sometimes I'm still in a lot of pain. I'm going to see a GI doctor on March 13th though just to make sure there's nothing else there.

fedora Enthusiast

Hi,

Healing can take a while. If you noticed improvement that's great, but realize it may take awhile. Two weeks is not long enough. There are specific blood tests that doctors can order and a biopsy that a GI can do. someone else would have more info on that than me. However, there are people who test negative on blood test and their biopsy shows no damage, but still are gluten intolerant. Please realize, gluten intolerance is more than wheat. It also includes rye, oats, barley, and spelt. You may not like your doctor, but it sounds encouraging that you DR would suggest this. There are people who have been dismissed by their doctors or their doctors refuse to believe they have gluten intolerance because their tests were negative. Good luck!

nikky Contributor

welome to the forum.. as the others have said this is life long, there is no cure

the thing about coeliac is that we are in controll of our health, only you can stop yourself eating gluten and therefore you can stop yourself getting sick.

healing takes time and there is the possibility of deficiencies and other intolerances to conted with (lactose intolerance seems pretty common among coeliacs).

eat healthy, and get as much variation in your diet as possible.

there are good celiac disease aware drs out there, im sorry that youve found one of the many bad ones but with help and support from the people on this site you will get there. Good luck. :)

Lshetler Rookie
They told me to try cutting out wheat, so I've just been eating fruit, vegetables, meat, and corn tortillas for the past couple weeks, and I feel a little better, so my doctor told me this is it. But sometimes I'm still in a lot of pain. I'm going to see a GI doctor on March 13th though just to make sure there's nothing else there.

I didn't notice much difference at all at first. The only way I knew I was intolerant to gluten was that when I went off it for a week, if I ate a slice of bread I wanted to die, lol. It wasn't until I was on a strict diet of only rice, veggies, and unseasoned chicken/fish that I felt better, and do I mean better! Now I can eat fruit as well; it takes time for the intestines to 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. - 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
      132,211
    • Most Online (within 30 mins)
      7,748

    MogwaiStripe
    Newest Member
    MogwaiStripe
    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.