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

Still A Bit Confused By Celiac Disease (Also: Celiac Petition)


KnightRobby

Recommended Posts

KnightRobby Enthusiast

I've been researching Celiac Disease like mad and I am still, admittedly, confused by some of what is said about this illness. This recent video and petition discusses the confusion about Celiac Disease (video below). And by the way, I've been treated this way countless times by doctors, Open Original Shared Link I also saw my GI doctor for the first time and he treated my Celiac Disease by handing me a pamphlet and told me to stay away from Gluten. So I thought, okay. That is simple enough.

From this video with TV Actress Jennifer Esposito says, "...They think you eat a Gluten-free diet and therefore you're better. And that's not the case." I understand that the Gluten-free diet is one of the most important aspects of treatment. My thought was eating Gluten-free would help heal well...mostly everything on its own because that is how it has been explained to me. I suppose I really don't know enough. And the information my GI Doctor gave me was simple, "Eat a Gluten-free diet and you are better." He didn't say anything else...at all.

She also speaks about nerve damage, stomach problems, etc. Does anyone know of other associated with Celiac Disease? Is there a list? And what do I do to get proper diagnoses (of course, see a bettet GI doctor for starters)?

Anyway, I'd like to say it is becoming far too common with how rudely this doctor's treat their patients - or just other people they either don't believe have these ailments or they just don't like. The petition is short of the needed votes, and I have seen Change.org work many times before.

Also, what he said at the end about stress and that it obviously took a tole completely overrided her and her doctor's explanation of Celiac Disease. She explained that Celiac Disease was the culprit of her knees giving out (exhastion). He explained and finalized (he is the doctor!) that stress was the culprit. I don't know if this was policital, to downplay Celiac Disease, or what was going on, but it is inexcusable.

Thanks for your help.


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Hi Robby-

Here is the University of Chicago's complete list of symptoms that are associated with Celiac Disease. The malabsorption of nutrients caused by celiac damage of the small intestine can effect any system in the body -- the human body will compensate when missing nutrients until it can no longer function. This is why those of us that went undiagnosed, misdiagnosed or dismissed for decades are often in very poor health by the time we get diagnosed.

Keep reading, researching and learning - I remember well when I realized that simply removing gluten wasn't going to be enough to get my body to heal, but healing is possible given time and determination.

How were you originally diagnosed/told to remove gluten - based on blood work? endo? symptoms alone?

KnightRobby Enthusiast

I was diagnosed by an Allergist who did blood work on me. My Iga level was 138.09/20, which I have asked out here and have heard that is pretty high. From here on, I've just been eating Gluten-free but still feel absolutely terrible. Something is still wrong and I have seen worthless doctors, which is eating up a lot of time and money.

I definitely have the determination. Seems like it is lacking in many of the doctors I have seen.

Thanks for the reply!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,315
    • Most Online (within 30 mins)
      7,748

    Steffieg
    Newest Member
    Steffieg
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
    • Dora77
      What really bothers me is if worrying about getting cc‘d from touching the same door knob as others touched is valid. Seems like an extremely unlikely way to get glutened but i read people saying that.    If thats true then theres realistically zero chance i dont get cc‘d in a non gluten-free household unless i Cook Everything myself and wash my hands multiple times in between and store all of my stuff separately
    • trents
      Welcome to the forum, @Mrs. Cedrone! Among the various causes for canker sores, are "Nutritional problems like too little vitamin B12, zinc, folic acid, or iron" https://www.webmd.com/oral-health/canker-sores Could you be deficient on something?
×
×
  • Create New...