Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Iron levels


penguin11

Recommended Posts

penguin11 Explorer

Prior to going gluten-free I had episodes where I had trouble breathing, got very hungry, dizziness, and was barely able to stand up straight. I think this could be related to anemia, since it is gone after going gluten-free. However, last week I ate vegan food every meal, and at the end of the week, the anemia feeling came back. Could this be related to low iron, and is it possible that my iron levels came back to where it was before I went gluten-free in only one week with low iron food?

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master
44 minutes ago, penguin11 said:

Prior to going gluten-free I had episodes where I had trouble breathing, got very hungry, dizziness, and was barely able to stand up straight. I think this could be related to anemia, since it is gone after going gluten-free. However, last week I ate vegan food every meal, and at the end of the week, the anemia feeling came back. Could this be related to low iron, and is it possible that my iron levels came back to where it was before I went gluten-free in only one week with low iron food?

 

I wouldn't think one week of vegan eating would bring on anemia unless your iron levels were already borderline. But do keep in mind that there are no vegetable sources of B12 except some fermented cabbage products and B12 is vital to iron absorption. 

penguin11 Explorer

I still can feel somewhat exhausted after/in stressful situations, but not so much as before. This is also the only symptom that still remain after going gluten-free.  Maybe I am borderline anemic as you menioned. Thanks for the tip on B12. I don`t eat dairy, so I may have to eat more meat.

trents Grand Master
(edited)

Have you had any blood work done lately to check for anemia, vitamin and mineral deficiencies? Read meat is absolutely the best natural source of iron and of the most easily assimilated kind of iron (heme iron). There is a form of anemia called "pernicious" anemia related to being unable to assimilate B12 because of lack of something called "intrinsic factor," an enzyme needed to absorb B12. With pernicious anemia, B12 supplementation has no affect. B12 injections must be used.

Edited by trents
penguin11 Explorer
1 hour ago, trents said:

Have you had any blood work done lately to check for anemia, vitamin and mineral deficiencies? Read meat is absolutely the best natural source of iron and of the most easily assimilated kind of iron (heme iron). There is a form of anemia called "pernicious" anemia related to being unable to assimilate B12 because of lack of something called "intrinsic factor," an enzyme needed to absorb B12. With pernicious anemia, B12 supplementation has no affect. B12 injections must be used.

I have not had any blood work done in years. I went gluten-free one year ago because my body was shutting down, and I was feeling worse and worse the last half part of my life. I did not get any diagnosis before I went gluten-free, which in hindsight I wish I would have tried to get. Now I live as if I have celiac disease, since 90% of my problems went away. Would you recommend going for a diagnosis? Maybe first check for vitamin and iron deficiencies, to get an indication?

knitty kitty Grand Master

@penguin11,

Most vegetables are not good sources of B vitamins except for leafy green vegetables like kale, turnip greens, collard greens, beet greens and even broccoli.

The best food sources of B vitamins are liver, red meat, pork and fish like salmon.  Red meat and liver are excellent sources of iron.  

Remember, you need all eight B vitamins (and various minerals like iron, calcium, magnesium and zinc).  Meats are the best sources for these.  Liver is the most nutrient dense with both vitamins and minerals.  

 

penguin11 Explorer
15 minutes ago, knitty kitty said:

@penguin11,

Most vegetables are not good sources of B vitamins except for leafy green vegetables like kale, turnip greens, collard greens, beet greens and even broccoli.

The best food sources of B vitamins are liver, red meat, pork and fish like salmon.  Red meat and liver are excellent sources of iron.  

Remember, you need all eight B vitamins (and various minerals like iron, calcium, magnesium and zinc).  Meats are the best sources for these.  Liver is the most nutrient dense with both vitamins and minerals.  

 

Thanks, will definitely eat more liver after hearing this.


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



Celiac.com Sponsor (A8-M):



trents Grand Master

I would suggest you get some bloodwork done to get a better idea of what might be causing this. Not every medical problem is related to having celiac disease. How's your insurance?

penguin11 Explorer
2 hours ago, trents said:

I would suggest you get some bloodwork done to get a better idea of what might be causing this. Not every medical problem is related to having celiac disease. How's your insurance?

Insurance is not so big issue where I live. I will go and draw some blood, and try to find some indications of what is going on.

Wheatwacked Veteran
On 10/23/2021 at 12:57 PM, penguin11 said:

since 90% of my problems went away. Would you recommend going for a diagnosis?

When you fill out the patient history form be sure to indicate the symptoms that got better with GFD.  Hopefully you'll find a doctor that will support or at least accept your self diagnosis and listen to what you say.  Let the doctor guide you as far as becoming labeled.

soybeanskidney Newbie

I had the same symptoms and I have a diagnosis of insulin resistance.  https://en.wikipedia.org/wiki/Insulin_resistance

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,707
    • Most Online (within 30 mins)
      7,748

    Penni Royal
    Newest Member
    Penni Royal
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @QueenBorg! Just for the sake of clarification, your desire to avoid gluten is connected only with your dx of fibromyalgia and not celiac disease, correct?
    • Jenny (AZ via TX)
      Thanks for the reply. I’ll call Colace to be sure.  I was just wondering if anyone had already gone through this:) I have not seen any gluten-free labeling on the package but I know that doesn’t mean it’s not gluten-free. The labeling is more of a comfort thing for me.  Do you think I need to worry about cross contamination if they say no gluten ingredients?  I’m so strict with being gluten-free but realize many manufacturers may have cya statements and the products are safe   Will look into Phillips as well. The surgeon recommended Colace and to add MiraLAX if needed so I actually need to get both as he says one of the worst things is to get constipated post surgery. 
    • QueenBorg
      Thanks for the information. I will definitely be doing a lot more investigating in the future!
    • Scott Adams
      Living or working in environments where gluten exposure is a constant risk can be incredibly challenging, especially when neurological symptoms are involved. For those with celiac disease or severe gluten-related disorders, airborne gluten (like flour dust in kitchens or shared workspaces) can trigger indirect exposure through inhalation or cross-contact, though true celiac reactions typically require ingestion. However, non-celiac gluten sensitivity (NCGS) or wheat allergy can sometimes cause airborne-triggered respiratory or neurological symptoms (e.g., headaches, brain fog, or even seizure-like episodes in rare cases). Your focal seizure could stem from chronic inflammation, vagus nerve irritation, or neuroglial activation if accidental ingestion occurred—but it’s also worth exploring PTSD-related responses if anxiety around exposure is severe. Many with celiac report delayed neurological symptoms (hours to days later), making it hard to pinpoint triggers. Since your family isn’t gluten-free, shared kitchens may pose risks (e.g., crumbs, toaster use, or cookware residue). Suggestions: Workplace Safety: If airborne flour was a factor, request accommodations (e.g., ventilation, PPE) under disability protections—though proving causality is tough. Medical Follow-Up: Push for neurological testing (EEG, MRI) to rule out other causes, and consider a gluten-free household trial to see if symptoms improve. It’s unfair you were let go without clearer answers. Keep documenting symptoms and exposures.
    • Scott Adams
      It’s incredibly frustrating when specialists don’t grasp the urgency of worsening symptoms, especially when neurological involvement is at play. For refractory celiac disease (RCD) diagnosis in Adelaide, your best bet is to seek out a gastroenterologist with specific expertise in complex celiac cases. Consider reaching out to: The Royal Adelaide Hospital’s Gastroenterology Department (ask for clinicians affiliated with celiac research or autoimmune disorders). A university teaching hospital (e.g., specialists at the University of Adelaide’s medical network often handle refractory cases). Celiac Australia’s clinician directory (they may have vetted specialists familiar with RCD). Since your symptoms are escalating, emphasize the neurological progression (e.g., neuropathy, ataxia) when booking appointments—this often flags urgency. You might also request repeat biopsies, TTG-IgA testing, and HLA-DQ2/DQ8 gene testing to rule out complications like RCD Type 2 or overlap conditions (e.g., gluten ataxia). If local options fall short, telehealth consults with celiac-focused centers in Melbourne or Sydney (e.g., The Alfred, RPAH) could provide second opinions. Keep advocating for yourself—you deserve answers. We also have a ton of articles on refractory celiac disease here: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/
×
×
  • Create New...