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

Anyone Else Have A B12 & Iron Deficiency?


californiagirl

Recommended Posts

californiagirl Newbie

First of all I'd like to thank everyone here for helping me with all of your suggestions and advice. It has helped me sooo much this last week. I began having noticable symptoms (that interfered with my daily routine) March of last year. My Mother was diagnosed with pancreatic cancer the month prior and her Doctors gave her 11 weeks. So during that time I blew my symptoms off as stress related. My Mother passed away in December and I continued getting worse. I went to see my GP and he said I had Gerd,he gave me some meds and no improvment. I began keeping a food diary. In mid May everything I ate made me sick. Heartburn, severe cramping & diarrhea, fatigue. Last week I had a colonoscopy, bloodwork, barrium test, ultrasound. I have to wait for the blood work 10 days. But my doctor did say that he thought I had Celiac and that I had flattening of the villi. In the first round of bloodwork I was iron deficient and very low in B12 which he said was unusual for a woman. I'm not sure what a lot of that means. Does anyone else have this? I did start gluten-free Saturday. It's really hard,overwhelming at first. So many foods with gluten. Today is the first day I have felt somewhat good in a very long time. But I'm still so tired, very little energy. Thanks again,


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



Celiac.com Sponsor (A8-M):



Guest jhmom

Welcome to the board!

I am sorry for the loss of your mother. I know that is a very hard thing to deal with no matter how old you are. I am glad you did not pass off your health problems as stress, as so many people tend to do. THe gluten-free diet can be VERY overwhelming at first, just hang in there it does get better. Once you really begin to feel a difference in your health it will ALL be worth it!

Browse around the site, there are a TON of helpful links on the site about gluten-free foods, safe places to eat, etc...

I will go ahead and give you a few links:

Open Original Shared Link

Safe & Forbidden Food & Ingredient Lists for Gluten-Free Diets

I am not sure about the resturants in your area but here are some links of places that offer a gluten-free menu and is posted on their website

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

oreyes Newbie

Californiagirl,

Heartfelt comfort for the loss of your mother.

You asked about a deficiency of B12 and iron. My celiac diease was misdiagnosed for seven years and I experieced both of those plus severe anemia. I received three transfusions but still could not get my iron levels up. My stomach wouldn't tolerate iron tablets so I finally had to have an iron infusion. Since then, my levels have stayed pretty normal. With all the diarrhea, my system was absorbing very little nutrition and I'm wondering if you've not experienced the same problem. I've been gluten free for three years now and except for one bad bout that lasted for a couple of month this spring, I've felt great.

Hang in there and don't become discouraged. In the three years that I've been diagnosed there have been so many improvements in food products and restaurants that are gluten-free friendly. I believe this is a diease that's just being discovered by many physicians here in the states. As stated in the previous e-mail, I think you'll find a lot of information on this site and just talking with others.

Take care and good luck. :rolleyes: ............Judy

oreyes Newbie
:( Scuse the mispelling of the word "disease"...and I did it twice!! Judy
Meenucat Newbie

I am *not* Celiac, apparantly, but I *do* have a B12 Deficiency - My doctors are not sure what is the cause of the defiency and I have had a normal MRI (of head), Colonoscopy, and Endoscopy...I'm in the process of trying to find out what the heck is going on with my body right now...(I do not have Pernicious Anaemia)

A low B12 level is when your body doesn't absorb B12 either through your intestines or bowel - The Ileum (part of the small intestine) is the part that is effected when you have Celiac, I believe (someone else may want to jump in and clarify this for me)...You may need to get B12 shots or maybe your levels will improve when you are further along on your gluten-free diet - Low B12 with Celiac means that your body is not absorbing certain vitamins/minerals (malabsorbtion) - Good luck to you and I hope you start to feel better soon :D

lovegrov Collaborator

Both of these deficiencies are QUITE common in people with untreated celiac because you haven't been absorbing things. It's very important to get both back up.

richard

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

    2. - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

    3. - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

    4. - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

    5. - Scott Adams replied to Jmartes71's topic in Related Issues & Disorders
      2

      New issue

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

    • Total Members
      133,092
    • Most Online (within 30 mins)
      7,748

    LVanderbeck12
    Newest Member
    LVanderbeck12
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? 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
      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
    • Scott Adams
      Your experience of being medically dismissed for decades, despite a clear celiac diagnosis since 1994, is unacceptable. It is a tragic common thread in our community that the systemic failure to understand celiac disease leads to a cascade of other diagnoses—like SIBO, IBS, depression, and now the investigation of MS or meningioma—while the core autoimmune condition is neglected. The constant, severe flu-like symptoms and new neurological concerns are absolutely valid and warrant serious investigation for connections to celiac-related autoimmunity or complications like refractory disease. It is enraging that you must fight so hard to be heard. While I don't have a medical answer about MS or meningioma links, your instinct is correct: relentless symptoms require a specialist who understands celiac disease beyond the gut. Regarding the California proclamation, it is a symbolic advocacy effort; reaching out to the women mentioned may provide supportive community, but your advocacy with your local representative is the most direct action. 
×
×
  • 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.