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

Do I Get Re-Tested? Several Glutenings In Last Month...


Nikki2777

Recommended Posts

Nikki2777 Community Regular

I believe my Celiac dx came relatively soon after onset (maybe within 2 - 3 years) and I my villi damage was only 'patchy' in the words of my Dr.  I went gluten-free last March and my GI symptoms have improved markedly.  After about 4 months gluten-free, I got both blood and endo tests and Dr. said everything was hugely improved, he could hardly see evidence of my GI damage.

 

Over the last month or so -- what with travel and the holidays, I believe I've gotten glutened 2x - 4x.  As my symptoms aren't severe, it's hard for me to know for sure.  I'm tempted to ask my Dr. to run the tests again, but I don't know how much gluten will damage me.  I'm going to get even stricter about cc for a while and hope that will help, but is there any value to me testing again to see if I've set things back?

 

How often do you get tested?


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Annually is sufficient since your numbers have already shown improvement.  At this point your body is likely a better indicator of when you accidentally ingest gluten.  Minor glutening and cross contamination is not a reason to get tested...simply a reminder of how careful we need to be.

 

Take care :)

bartfull Rising Star

"I'm going to get even stricter about cc for a while and hope that will help,"

 

You meant you're going to get TOTALLY strict about CC FOREVER, right? :lol:

 

Just bustin' your chops a little. Hope you're feeling better soon. :)

NoGlutenCooties Contributor

I've only been gluten free for 3 months but my doctor wants to retest the blood at the 6 month mark.  As long as the numbers are going down there won't be any other further testing necessary.  Ever.  Unless I start having some sort of persistent symptoms (persistent meaning NOT as a result of some accidental glutening).

 

Also just wanted to add... you have to go 100% gluten free.  For life.  Mistakes will happen but we all really have to do whatever we can to avoid cross-contamination and any other source of gluten.  Gluten = antibodies = damage = malabsorption = health problems.

GFinDC Veteran

Hi,

 

If you got glutened, then you know you have been damaged.  No doubt about it.  The immune system doesn't take breaks from celiac disease just because you are lax in your diet.  What's more important than additional testing is getting away from the attitude that is is ok to be lax and take chances.  As long as you have an attitude that it doesn't matter much then you are heading for trouble.  We all make mistakes sometimes though, and that is at times unavoidable.  So the thing to do is get right back on the straight and narrow and learn from those mistakes.  Over time you can learn to avoid such incidents or make sufficient preparation to avoid problems.  It is all a learning process but the right attitude makes learning easier.  And less painful.  Celiac disease requires the gluten-free diet, and the gluten-free diet is a medical diet, not an optional diet.

 

Having to pay more attention and take more time for your diet than other people do can be a pain sometimes.  And may make holidays a little challenging.  But the payoff is better health.  Doctors can't fix your diet, that's up to you alone.  You are in the driver's seat as they say.  You can do it! :)

Nikki2777 Community Regular

Thanks everyone, but I'm afraid my quick writing gave the wrong impression.  I'm VERY careful about cc and strict on my gluten-free diet.  However, as you've noted - accidents DO happen. 

 

I have to travel and eat business meals for my livelihood, and I choose to go out with my family to eat so that my children don't feel, should they eventually get Celiac, that it's a life sentence to solitary.  If I don't feel a restaurant is trustworthy, I have a KIND bar I keep in my purse and eat my own food when I get home.

 

I refuse to be a victim and allow this disease to keep me in my house.  Perhaps if I'd had more damage at the outset, and more years of pain, I might feel differently, so I don't fault anyone for their choices.  But, per my doctor, my efforts til now have been very successful.  I do not ever, in my lifetime, expect to have the foods I miss, and I've come to terms with that.  It's no big deal and I don't pine for them.  I'm also lucky that I live somewhere with a high awareness of the precautions that need to be taken, and great grocery options.

 

I will continue to be careful, and yes, step up my already significant efforts to avoid cc.  But take my word for it, I'm not one of those who's dealing with this halfway.  Accidents happen, and I only wanted to know if there's a benefit to testing soon after a feared glutening.

 

Thanks 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,311
    • Most Online (within 30 mins)
      7,748

    kayd.sloan
    Newest Member
    kayd.sloan
    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...