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

Anemia/vitamin Deficiency Surprise


BZBee

Recommended Posts

BZBee Apprentice

I was feeling really good after a week of bed rest and massive vitamin intake. Then, I returned to work last week and all that energy depleted. I feel like I'm back at square one. I gave up trying to focus so I went to bed to lay down. Moderate muscle and bone aches, brain fog, and extreme exhaustion. I know I didn't have any gluten so I think I'm doing more than I should at this point. This is the part I hate the most! How long did it take before you started feeling semi-normal?


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



Celiac.com Sponsor (A8-M):



BZBee Apprentice

Work didn't happen today, :-( the pain got worse especially in my legs and feet. I thought my feet were going to break when I stood up. Ugh! I hate Celiac Disease!

CaliSparrow Collaborator

I'm sorry. I am 5 months in and still learning. It's a process of learning and adjustment. Learn, adjust, learn, adjust, learn, adjust. I've had to forgive myself for not rising to my level of expectations and then forgive myself for having too high of expectations. Many veterans here feel very good and it took quite a few of them a long time. One person on here who was 3 1/2 months in posted her doctor's response and that helped me to adjust my expectations: https://www.celiac.com/forums/topic/100497-your-bowels-are-like-berlin-post-war/?hl=%2Bberlin#entry858877

I'm about to dig into the Paleo diet. So far, I'm sensitive to gluten, nuts, dairy, corn & soy. If I had it to do all over again, I would have started with the elimination diet (or Paleo) from the git-go. I am where I am though and my husband says he sees positive changes from an observer's point of view.

Hang in there and go easy on yourself.

Cali

BZBee Apprentice

Yes, trial and error! I'm sticking to fresh vegetables, fruit and beans for the time being. It's easier to drink my meals than eat them. I manage one solid meal a day. I remain optimistic :-)

Peg-leg52 Newbie

I have suffered with colon problems all my life. I get very sick and end up with diarrhea. I now am deficient in Vit B12, Vit D and have been iron deficient anemia. It was so severe they was going to give me blood transfusions, but I opted for the iron infusion.

 

I have had the blood test ran for Celiac's and it came back negative. I'm going to go gluten free to see if that helps.

 

This is awful to have because when you have the attacks you are restricted to home close to the bathroom and wears me out.

gfreemarketingguru Rookie

it can take some time before you feel great, but i suspect you'll start feeling better a little at a time. You mentioned taking vitamins, one thing we learned is that deficiency of B vitamins is common & can be related to some of your symptoms, but can be really hard for the intestines to absorb..we found that B vitamins in disolvable tablet forms work, they disolve under your tongue and get absorbed right away. Also, be sure your vitamins are gluten-free too, many are not!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,667
    • Most Online (within 30 mins)
      7,748

    AubreyMBSMartin
    Newest Member
    AubreyMBSMartin
    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
      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
    • Xravith
      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.