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

The Fire Down Below

darlindeb25

Recommended Posts

darlindeb25 Collaborator
darlindeb25
Posted

The fire down below

How I discovered I had celiac disease and learned to live gluten-free

by Matthew Irwin

First, the coughing begins

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

Celiac.com Sponsor (A8-M):


mouse Enthusiast
mouse
Posted

That was so interesting. Thanks for sharing.

darlindeb25 Collaborator
darlindeb25
Posted
  • Author

You are very welcome. I find it so sad that we go to the doctor and tell them exactly what we know and they tell us we don't know what we are talking about. So many of us gave our doctors so much to work with and they just called us hypocondriacs, it's so sad and so aggravating. Then we are sick for so long and develope other problems--it's all so aggravating.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,348
    • Most Online (within 30 mins)
      7,748
    Catarsis
    Newest Member
    Catarsis
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Hi. Yes. I’m awaiting my Biopsy results. I had B12 and other labs drawn on Mon, including Thyroid levels, as I am on Levothyroxine for radiation-induced hypothyroidism. Those levels should indicate any iodine issues. We had discussed the urine iodine, but he went with the thyroid instead. We’ll see.  I never had any of those Pellagra skin changes, or Casal’s necklace. Just itchiness in the supraclavicular hollows on both sides of my neck, and the anterior aspect as my neck radiation site.  The hollows had no changes until I scratched them, then I got the rash on those areas like the ones I have now scattered in different areas, usually on both sides with the exception of my anterior thighs. My right is affected, my left isn’t. I am 70 and have all my teeth as well - amazingly after having had max dose radiation in 2002. 😂 Unfortunately, because of long term changes in my oral mucosa because of it I can’t use mouthwashes - even non-alcohol ones, as they all burn my mouth like fire. Toothpastes burn as well, but not nearly as bad. I have an electric toothbrush but it is getting more difficult to use due to increasing trismus. Some days I cannot open my mouth wide enough to get the electric brush between my back teeth, so on those days I use a regular one. Gotta do what you gotta do.  Thank you for your input. Any insight I can get into this is appreciated. So, for now it’s the waiting game for test results, then we can form a treatment plan going forward. 
    • James47
      I’m terrified it’s too late for me😭

      By James47 · Posted

      Hiya..I was 48 when diagnosed two years ago and I was in right bad way but strict gluten-free diet you will recover I promise x
    • James47
      Long term recovery

      By James47 · Posted

      Hi everyone I'm James, I hope you are all feeling well??. Accidentally had gluten at weekend and I've had severe diarrhea since sat night. My question is ,the longer someone like myself has been following a strict gluten-free diet will the exposure to gluten be lot more extreme as body now has been free of it well over a year ? Any information be much appreciated and any tips on how to stop the constant diarrhoea I have currently also be appreciated guys x
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      Thank you so much Scott 🫶🏻
    • Wheatwacked
      SkinSafe

      By Wheatwacked · Posted

      I use Listerine.  Rinse first to soften the tarter, then brush with Oral B electric toothbrush super sonic.  The $15 ones at the supermarket.  At 73 I still have all my teeth.  While a blood test can measure iodine levels, it's not the most accurate method for assessing iodine status, and urinary iodine excretion is considered a better indicator.  Have any of your dermatologists ever done a biopsy for dermatitis herpetiformis?  I may have missed it.  Note the similarity of Casal's necklace to one of your symptoms. Pellagra rash is a characteristic skin manifestation of niacin (vitamin B3) deficiency. It typically presents as:  Erythema: Red, sunburned-like areas of skin, often on the face, neck, arms, and legs.  Scaliness: Dry, flaky skin that may become thickened and crusty.  Hyperpigmentation: Darkened patches of skin, particularly in sun-exposed areas.  Casal's necklace: A dark, pigmented band around the neck.  I am currently taking these} Vitamin D 10,000 IU (250 mcg) DHEA 100 mg 500 mcg Iodine  10 drops of Liquid Iodine B1 Thiamin 250 mg  B2 Riboflavin 100 mg B3 Nicotinic Acid 500 mg 4 times a day for hyperlipidemia. B5 Pantothenice Acid 500 mg Vitamin C 500 mg     Selenium 200 mcg  Several times a week
×
×
  • Create New...