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

When Will I Get Better?

savvysue

Recommended Posts

savvysue Rookie
savvysue
Posted

I've been on the gluten free diet for almost two months now, but I don't really feel better than I did before I was diagnosed. When people ask me if I feel like a new person now that I'm on the diet, I frown and want to say, "No. not really. I'm not." :( When will I get better?? I dont have alot of the stomach-related symptoms, I have more of the joint and autoimmune symptoms. I also have delayed growing. I'm 16, but I have the body of an 11 year old, and i'm skinny. When will I feel better? When will I look better, and have more energy?

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

Celiac.com Sponsor (A8-M):


toni m Newbie
toni m
Posted
I've been on the gluten free diet for almost two months now, but I don't really feel better than I did before I was diagnosed. When people ask me if I feel like a new person now that I'm on the diet, I frown and want to say, "No. not really. I'm not." :( When will I get better?? I dont have alot of the stomach-related symptoms, I have more of the joint and autoimmune symptoms. I also have delayed growing. I'm 16, but I have the body of an 11 year old, and i'm skinny. When will I feel better? When will I look better, and have more energy?

i am sorry to hear u are not feeling better. my daugther (who is 19) was diagnosed with celiac disease one year ago - she had positive blood work and positive biopsy. she was gluten free and was not getting any better either. months went by and the dr kept saying it was going to take time because her villie were so far gone. we ended up switching doctors - he took one look at her and immediately ordered a colonoscopy. she was diagnosed with crohn's disease and well as the celiac. unfortunately the dr that did the biopsy for celiac saw the villie diagnosed the celiac and went no further to check for any other possibilities. it sounds like the same thing may have happened to u. by the time her crohn's disease was diagnosed her entire colon was diseased. she is doing much better now with her medication for crohn's and the gluten free for the celiac. i hope u feel better but i would suggest to your doctor to check and see if u have something else going on - good luck - if u need any advice just ask.

gftruck Newbie
gftruck
Posted

I know exactly how you feel. I've been gluten-free for a little more than 2 months now, but fortunately I was diagnosed early enough that I don't really have any malnutrition issues. I just get sick ALL the time. People ask me the same thing about "feeling better" and "eating right" when really all I want to do is eat an entire pizza. It can be depressing, watching friends eat grilled cheese and bagels and things like that, but you eventually learn to appreciate the smell more than anything! I just keep telling myself that it will all get better once I'm more used to what I can and can't eat and when I'm a more "experienced" Celiac, if you will. Good luck with everything, and just remember that you're not alone!

  • 2 weeks later...
Fitze082 Newbie
Fitze082
Posted
I've been on the gluten free diet for almost two months now, but I don't really feel better than I did before I was diagnosed. When people ask me if I feel like a new person now that I'm on the diet, I frown and want to say, "No. not really. I'm not." :( When will I get better?? I dont have alot of the stomach-related symptoms, I have more of the joint and autoimmune symptoms. I also have delayed growing. I'm 16, but I have the body of an 11 year old, and i'm skinny. When will I feel better? When will I look better, and have more energy?

Wow I'm sorry to hear that. I have read from people that suffered with the same type of issues as you that it took anywhere from 6 months to a year or so. It really depends on how bad your disease was before you were diagnosed. I suffered from the stomach issues so I dont have any personal issues. Just stay hopeful and stick to the diet

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,666
    • Most Online (within 30 mins)
      7,748
    bailey1023
    Newest Member
    bailey1023
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.