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. - Russ H replied to Ginger38's topic in Related Issues & Disorders
      27

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    3. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    4. - Theresa2407 replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    5. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

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

    • Total Members
      133,708
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      Shingles vaccination also provides some protection against dementia: https://www.nihr.ac.uk/news/major-study-finds-new-shingles-vaccine-could-lower-risk-dementia
    • knitty kitty
      @Heatherisle, You have good reason to worry.   Ask the doctors to do an Erythrocyte Transketolace Activity Assay to test for Thiamine B1 deficiency.  Thiamine deficiency is frequently found in B12 deficiency.  Deficiencies in all the B vitamins are common with malabsorption due to Celiac disease.  Thiamine can run out in as little as three days.   Thiamine deficiency symptoms can be mistaken for other diseases such as MS and Guillian-Barre Syndrome.  Thiamine deficiency symptoms include pain in legs and abdominal pain as well as depression and gastrointestinal symptoms. Thiamine B1, Pyridoxine B6 and Cobalamine B 12 together relieve nerve pain. References and Interesting Reading: Wernicke’s encephalopathy mimicking multiple sclerosis in a young female patient post-bariatric gastric sleeve surgery https://pmc.ncbi.nlm.nih.gov/articles/PMC8462913/ Thiamine Deficiency Masquerading As Guillain-Barré Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11872742/ Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke’s Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC6429982/ Is there a Link between Vitamin B and Multiple Sclerosis? https://pubmed.ncbi.nlm.nih.gov/28875857/ Thiamine Deficiency and Neurological Symptoms in Patients with Hematological Cancer Receiving Chemotherapy: A Retrospective Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC8559079/ The Effects of Vitamin B in Depression https://pubmed.ncbi.nlm.nih.gov/27655070/ Thiamine Deficiency Neuropathy in a Patient with Malnutrition due to Melancholic Depression https://pmc.ncbi.nlm.nih.gov/articles/PMC10942818/ Myopathy in thiamine deficiency: analysis of a case https://pubmed.ncbi.nlm.nih.gov/16920153/ Neurologic complications of thiamine (B1) deficiency following bariatric surgery in adolescents https://pubmed.ncbi.nlm.nih.gov/38705013/ B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pubmed.ncbi.nlm.nih.gov/31490017/ Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6459027/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Update on Safety Profiles of Vitamins B1, B6, and B12: A Narrative Review https://pmc.ncbi.nlm.nih.gov/articles/PMC7764703/  
    • Heatherisle
      Hi  There’s been no mention of her adrenal glands as far as I know
    • Theresa2407
      Have they checked her Adrenal glands.    
    • Heatherisle
      Just an update on my daughter. She is still in hospital and getting quite depressed about everything. She had a CT scan of head and chest to rule out stroke in view of her symptoms. Thankfully there is no evidence of that so they now want to do an MRI to rule out MS so this is freaking her out and it’s not doing me much good either!!!They’re also going to do further blood tests to check vitamin levels. My husband and I are trying to reassure her the best we can that hopefully it’s just her body’s reaction to having the Vitamin B medication and it’s affecting her nervous system etc. Think the tingling has subsided but still having some lower back and pelvic pain and some leg pain. Thanks for reading and my apologies if I sound paranoid.
×
×
  • 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.