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

Post Diagnosis - Not Feeling Great


gilligan

Recommended Posts

gilligan Enthusiast

I was diagnosed in August.  I've done everything right - no gluten, read labels, "de-glutened" kitchen, no processed foods, etc.  I'm still having digestive issues.  I've gone from lactose intolerant to complete dairy intolerant.  I think sugar bothers me, so I've given up most of it.  I gave up raw vegees and soy.  I've read enough on here to know that sometimes things get worse before they improve, but how long does it take?  Should I feel better by now?  I'm eating, eating, eating because I can't afford to lose any more weight.  Lately, I've had dehydration issues, so it was discovered that I was low in potassium, so I'm drinking more liquids than ever.  Is there an end to this?  Getting very frustrated!


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

It takes awhile. Make sure your diet and kitchen is clean, eat well and in time you will see the difference, have patience.

 

Annette

nvsmom Community Regular

It took me over a year for my body to really settle down, and there were some ups and downs in there where I felt really good and then really really bad. Keep doing it right and give it more time. Perhaps check your nutrient levels (B12, D, A, K, Fe, Ca, zinc, Cu) and even your thyroid  function - that can affect your metabolism a lot; TSH, free T4 and fre T3, and TPO Ab are the labs for that.

 

Hang in there. If it doesn't improve by spring, look into more causes - hopefully you won't need to.

1desperateladysaved Proficient

I have found that coconut water is a good hydrator for me.  It sounds like you are making good progress learning the diet.  I think your body is healing, but you don't feel it yet.  Have you had your nutrient levels tested to be sure they are getting in?  I have used a special Carbohydrate diet in which you eat mean vegetables, and use nut flours.  Digestive enzymes and other supplements have helped me much. 

 

I had 30 years of bloating, foggy brain, and fatigue.  The fog cleared, I am 18 months gluten free, so I believe that you can come out too.  Sometimes, my worse days, were the days just before my highest peaks.  Hang in there.

 

D

cyclinglady Grand Master

August is too soon to expect significant results.  I was diagnosed in March.  Am finally feeling much better.  So, hang in there!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,569
    • Most Online (within 30 mins)
      7,748

    lizz Z
    Newest Member
    lizz Z
    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

    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
×
×
  • 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.