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

Now I Know I Am Celiac


Gerri

Recommended Posts

Gerri Explorer

I couldn't understand until I fired my doctor, and got my lab work back, why my ex doctor told me to stay off Gluten the rest of my life.

Tissue transgluaminase IgA *normal is less than 5*, my reading was 5. This number is the lowest level for Celiac, but the blood work was done during a time I was watching the amount of gluten and cutting back (had totally been off gluten for 4 weeks). Then I was back on gluten. The six weeks of forcing myself to eating gluten, nearly killed myself doing it. I landed in hospital twice. I was so very sick, but doctors still didn't hear me and went ahead with small intestine biopsy. It showed I had hiatus hernia, ongoing inflamation of my esophogus, a duodenal diverticulum, all signs of celiac damage. Still I wasn't diagnosed with Celiac. This was on report dated December 2008.

It's now February 24th my observations and why I will get a doctor to diagnose me with celiac:

1: Diabetes brought totally under control following a Celiac diet, that I started right after the biopsy.

2: My severe sleep apnea, seems to be brought totally under control, to a point I may not need my CPAP. (7 years of CPAP use for severe obstructed sleep apnea, with Central Apnea, and then nothing)

3: Lastly as the pressure of my CPAP was brought down, with help of sleep doctor, I am finally started to loose weight. I lose 2 lbs overnight.

I am so in shock, since yesterday when the doctor said I would have to have another sleep study (this coming Saturday), but at the moment he would say, from the numbers he seen, I didn't have sleep apnea. He also said he would not say I didn't have sleep apnea because he didn't have base numbers as I moved from Sarnia area to Kitchener. He did ask the technician to put pressure down to 11 from 15.

Last night and this morning, I had more optical migraines. I still have lots of swelling around eyes, and hands, my RF value is high. I think Celiac has caused lots of damage to my health.

Hugs

Gerri


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



Celiac.com Sponsor (A8-M):



oceangirl Collaborator

It's great you are getting to the bottom of your ills. Keep reading here and good luck with continued health.

lisa

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748

    Michelle C.
    Newest Member
    Michelle C.
    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.