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
      131,671
    • Most Online (within 30 mins)
      7,748

    Paul1567
    Newest Member
    Paul1567
    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

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      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
      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
      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
×
×
  • 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.