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

Proud Of Myself!


bartfull

Recommended Posts

bartfull Rising Star

Well, I am self-diagnosed. There are two reasons for that. 1) I don't have insurance, and 2) I have, not an IRrational fear of doctors, but what I think is a RATIONAL fear. It was medical error that killed my father. It was medical incompetence that killed my beloved Grandmother. And I'm pretty sure Mom's "leukemia" was actually a vitamin B-12 deficiency brought on by her Celiac.

But, I finally went to a doctor! I have this jaw pain that flares from time to time. This has been going on for years now (about 5), and I DID go to several dentists and MD's when it first started. Not one of them could tell me what it is. They all said I need an MRI. Once again, no insurance.

But with all of these food intolerances (gluten, corn, salicylates, and possibly nickel) there is not one over the counter pain med I can take. So I asked this doctor to write me a prescription to have some "clean" Tylenol made.

I was pretty impressed with this guy. He took time to talk with me, even though I didn't have an appointment. (Walk-in clinic) He gave me a couple of things to try in the meantime, to ease the pain. (Alternating hot and cold compresses, epsom salt poultice, that kind of thing.) Then he told me to call him the next day to see how I was feeling. AND, the regular clinic he works at has a nutritionist on staff. He has set up a telephone consultation with her for me on Monday. I'm not getting anywhere near the nutrition I need right now and have not been able to find vitamins that don't have at least one of my "poisons" in them. He thinks this lady might be able to help.

I have another appointment with him on the 6th of January, and I'm going. This walk-in clinic is a once every two week deal that they hold at a local church. It is free. This doctor knows I'm about broke so I think that's why he set this nutritionist talk up over the phone - no office visit fee.

But even though his regular office is about 40 miles away, I will now know who to call if I ever really NEED a doctor. And I won't be afraid. I hesitate to speak too soon, but I think I trust this guy!


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

Glad you found somebody you trust...and the price is right!!!!!!

I asborb liquid vitamins way better than pills... I wish you luck with the nutrition consult, I never found or had much luck with them or a dietican when it comes to celiac....

love2travel Mentor

Excellent news! It is encouraging to hear about your new doctor. My dietitian is absolutely amazing - jam packed with correct and current information. All the best! :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,937
    • Most Online (within 30 mins)
      7,748

    VNelson
    Newest Member
    VNelson
    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

    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal.  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) the small intestin in Celiac Disease and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  Why is poorly understood.  In fact, it wasn't even know that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So as part of your symptoms you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were sypmptos. Our western diet has many deficiencies build into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks for symptoms can come on quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, and indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog, deficient choline, iodine, thiamine. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study    
    • Rogol72
      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
    • Scott Adams
      I am only wondering why you would need to cut out rice? I've never heard of rice being any issue in those with DH.
×
×
  • 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.