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

Don't Know If Have Celiac


Punky Brewster

Recommended Posts

Punky Brewster Newbie

I have RLS. I have tried Mirapex And Requip. These drugs had terrible side effects from insomnia, nausea, vomiting and headaches. My neurologist now has me on klonopin 1 mg. 2 times daily at my request. Now I am sleeping and the RlS is subsiding.I recently saw my primary physician and requested iron levels be tested along with other tests that are done every 6 months. Dr. called me today with my results.Everything was in range except the iron that is stored in bone marrow was low. I believe she said level was 8.Any ideas?


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hi, Punky. I am wondering if you have any other symptoms of celiac disease besides RLS and low iron. In case you are not familiar with all the symptoms here are a couple of sites to check them out (there are many more if you do a google):

For symptoms see: Open Original Shared Link

Open Original Shared Link

See if you can find yourself somewhere in here.

If I were you and could put forth a case for it, or even on a whim, I would ask my PCP to do the initial testing. Just ask her if she would run a celiac panel on you (make sure she includes total serum IgA and DGP). If these are negative then she probably won't' refer you to a GI unless you have a PPO plan where you can refer yourself. But the GI's tend to be rather imperious and know-it-all and it is hard to find one tht knows a lot about celiac (or knows as much as he thinks he knows :P ).

Anyway, read through the symptoms and see if any of it applies to you. Google for extra sites and read all you can about it so that you can arm yourself for a doctor's visit where you ask for the testing. It is sthe only way to know. If the testing comes back negative, then try going gluten free (you don't need a doctor's permission) and see if it helpsl :)

cassP Contributor

im assuming your stored iron in the bone marrow is FERRITIN... and if yes, 8 is WAY tOO LOW, and could most definitely be causing your RLS. now, why do u have the LOW FERRITIN?? could it be Celiac? do u have Hashimoto's Hypothyroid?? (both these diseases impair your digestive system's ability to absorb iron)... or do u have any kind of bleeding disorder?? Fibroids??

my bff's Ferritin was 6 or 7, she had really bad RLS, pica, hair loss, fatigue, etc... and she had enormous fibroids that had to be removed.

my ferritin was 11.. and i had fatique, hair loss, and could not tolerate my thyroid meds at all ( i have both Celiac & Hashimoto's).

you should aim to get your ferritin between 50-90.. and iron 70-80 ( i think)... dont supplement too fast like i did.. iron above range can be dangerous too.

& i agree w/Mushroom- i actually just asked my PCP to run a Celiac panel... she asked me why- and i told her about all my digestive crap. i was lucky she ran a complete panel, as i didnt test positive on ALL the antibodies..

good luck to u!

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 Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Recovery from gluten challenge

    2. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Brain fog

    3. - trents replied to Scatterbrain's topic in Sports and Fitness
      2

      Feel like I’m starting over

    4. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      2

      Feel like I’m starting over

    5. - Scatterbrain posted a topic in Sports and Fitness
      2

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,281
    • Most Online (within 30 mins)
      7,748

    newlife213
    Newest Member
    newlife213
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Brain fog, like other celiac disease symptoms, does improve after you to 100% gluten-free, and supplementation will also help.      
    • trents
      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
    • cristiana
      Hello @Scatterbrain and welcome to the forum I am sorry to hear you have had a return of your symptoms.  My first thoughts were that stress can cause IBS-like symptoms - a friend of mine has been suffering a huge amount of stress and when that happens she gets diarrhea.  But you say that you haven't got any bad abdominal issues, so perhaps you could share what other symptoms you are having? Cristiana  
    • Scatterbrain
      Hello, I was newly diagnosed in January of this year (2025).  Since then I have been strict about staying gluten free and only cooking at home.  I started feeling better in July while gradually resuming close to my normal routine of activities and athletics. September and October were extremely stressful due to a new home build being finished and moving.  My spouse and I take care of his mom who has advanced dementia and have been since 2021.  We did all the moving as well as get the other house on the market for the month of October.  Since earlier this month I feel like I did back in the early stages of my diagnosis.  Almost all of my symptoms have come back except for the bad abdominal issues.  I haven’t changed my diet or supplements since January and wonder if the stress has caused a set back? Any thoughts are helpful.  Thanks
×
×
  • 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.