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

How Long Did It Take You To Feel Better?


Sieben

  

12 members have voted

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

Recommended Posts

Sieben Rookie

People seem willing to volunteer this information, but it would be cool to have it all in one place.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

For some of us this will be a hard poll to answer. My D, depression and migraines were gone within about a week but joint pain and stiffness, muscle pain, ataxia took much longer to resolve. Like closer to six months. I would still have occasional issues when I thought I might be glutened but it turned out to be a sensitivity to soy. I do have some damage that will never resolve completely because I took so long to get a diagnosis. Most days though I am pain free at least gut wise.

IrishHeart Veteran

I was very ill for quite some time and I had dozens of symptoms, so this question is very difficult to answer without clarification.

Some symptoms resolved within 10-11 months, (most of the gastro and dermatological issues resolved by then as well as the anemias (B-12, folate, iron) and blurry vision, burning mouth and burning GI tract, etc. stopped.

I was also soy and dairy free --except for using ghee-- and I used digestive enzymes and probiotics religiously.

More symptoms resolved with 18 months (the neurological (ataxia, parasthesia, burning nerve pain) and endocrine system symptoms are mostly gone. Thyroid is functioning normally, blood sugars are normal. No more bladder, kidney or liver issues. Vitamin levels (D, K) are restored. ) Long term insomnia has resolved for the most part. Hair is growing back in. I gained weight (I had lost 90 lbs.) I have more energy. I feel "like me" again.

But I still suffer significant joint, muscle and tendon pain, some parasthesia and weakness. I am in Physical and massage therapy and work hard at rehabbing. Bone density was affected. We'll see what happens.

I am patient. It will come. :)

KMMO320 Contributor

I am only 4 days in to being gluten-free and of course I don't expect to feel 100% already, but I did vote for 1-2 days because my biggest symptom complaint is gone already.

My biggest troubles were/are stomach issues, brain fog, watery and itchy eyes, runny nose, nasal/ear/jaw aches, headaches and irritability. So far, my brain fog and sinus/head issues are non-existant, but thats because I feel those pains within 20-30 mins of eating gluten and it takes several hours to "clear" for me. Since I havent eaten any, I havent had problems.

My stomach is still wonky, but I expect that to take a little while.

I wasn't someone who was seriously ill, and I feel for the people who are. I think I happened to catch it before I DID get very ill, as my symptoms got progressivly worse over the last 2 years. I think had I waited, I would have ended up really, really sick before I knew what was wrong.

GF Lover Rising Star

All of my GI issues resolved in 3 weeks. All other issues are on "wait and see" status.

Adalaide Mentor

I noticed after about a month that my GI symptoms had more or less cleared up. I also realized I could think again. I never told my doctor that I felt like the whole world was surreal or that I felt detatched from it because I didn't want to end up in a psych ward somewhere. Anyway, that's what got better.

I have noticed as time goes on I have more days where I wake up feeling like I was hit by a truck than by a train, which is technically an improvement. It is certainly no way to live. Some days I'm still so physically sensitive that the lightest touch will having me wincing in pain and sometimes even crying. I have muscle spasms and tics that are annoying and cramps that can be debilitating. I get migrating pain with no known cause. I still have significant and very painful swelling in my left leg made worse by any type of activity.

Sure, I feel a lot better. Sadly that hasn't gotten me far and I still generally feel like crap, although I do now realize there is a light at the end of the tunnel even if I can't see it yet.

I'm also exclusively gluten free. Frankly, if it weren't for a confirmed diagnosis I doubt I would have even considered trying gluten free. I've cut my dairy consupmtion considerably, I do about 1/4 or maybe 1/3 of what I used to and am counting that as a win so far. The more time passes the more I suspect an issue with it but am sort of just hoping at this point that it'll pass as I heal and keep slowing scaling back.

Archived

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

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

    • Total Members
      133,206
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.