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

This isn't that bad!

tooth-whisperer

Recommended Posts

tooth-whisperer Apprentice
tooth-whisperer
Posted

Hi all,

I'm very early to this, don't even know if I have celiac yet but highly suspicious.  Wife and I went to Trader Joe's lastnight and I grabbed up all the gluten-free items I could get my hands on (at least of what we were shopping for).  So far the ginger snaps, brown rice and quinoa pasta, and TJ's brand sandwich bread are actually very good!  I can tell a slight difference between the gluten-free products and their regular counterparts, but I have to say, not in a bad way, just different.  They're quite tasty, and I told my wife I think I like them more in some ways.  The bread reminds me of english muffin bread, it makes great toast.  I'm sure it's not all rainbows and unicorns when it comes to substitute foods, but I'm digging it so far.

Now to call the GI's office and see how soon they can get me tested, so I can get off the G for a while and keep discovering this new food...

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

if you haven't been tested yet, you need to continue to consume gluten otherwise your test results may be incorrect.  the blood test is for detecting antibodies and if your body isn't fighting, the test won't detect any or not enough.  here is some suggested reading:

just a couple of hundred other things involved with being completely gluten free :)  lolz - welcome to the forum.

 

 

 

squirmingitch Veteran
squirmingitch
Posted

Great advice from notme! Please be sure to follow the links contained in the Newbie 101 that notme! linked you to. You'll need to get a new toaster or toaster bags, and a new, dedicated cutting board, dedicated condiments or squeeze bottles of them all and do numerous other things. Better let your wife read it too. 

tooth-whisperer Apprentice
tooth-whisperer
Posted
  • Author

Thank you both for the info.  I did in fact go back to eating gluten just tonight, because I am going to talk to my internist about the celiac panel tomorrow, and put myself on the cancellation call list at the GI office to try and get in sooner.  I want to get this figured out!  If I've been mostly off for 5-6 days, how long do I need to be having gluten again before I have my blood tested?

squirmingitch Veteran
squirmingitch
Posted

Open Original Shared Link

Since you've only been off for 5 or 6 days & I'm betting you got cross contamination during that time then I don't think you need to go a full 12 weeks but I nor anyone else can exactly how much having been off will affect you. It's so hard to say. The thing is, you want to be SURE and don't want to ever doubt your test results. I certainly wouldn't get the panel drawn in the next week. If it were me; I wouldn't do it for a bare minimum of 3 weeks.

You can look at it this way.... you could go through Christmas & New Years pigging out on all your favorite gluen foods to say (possibly) goodbye to them forever. 

tooth-whisperer Apprentice
tooth-whisperer
Posted
  • Author
2 minutes ago, squirmingitch said:

Open Original Shared Link

Since you've only been off for 5 or 6 days & I'm betting you got cross contamination during that time then I don't think you need to go a full 12 weeks but I nor anyone else can exactly how much having been off will affect you. It's so hard to say. The thing is, you want to be SURE and don't want to ever doubt your test results. I certainly wouldn't get the panel drawn in the next week. If it were me; I wouldn't do it for a bare minimum of 3 weeks.

You can look at it this way.... you could go through Christmas & New Years pigging out on all your favorite gluen foods to say (possibly) goodbye to them forever. 

Yeah, I kind of figured it's my time to go a little crazy!  Today I informed the partners at my dental practice that if my symptoms get too uncomfortable, I might need to take some time off, and they're understanding folks.  One of the things I've been most concerned about is missing work, but we have a few dollars in the bank and I think being able to relax at home and just lay down and nap when I don't feel well will make it a lot easier.  I normally work 45-50 hours a week, which was fine until discomfort and anxiety were piled on as well.

squirmingitch Veteran
squirmingitch
Posted

Yep, have a last wild fling! Drink your fill of you most favorite beer. Eat those fabulous Christmas baked goods with total abandon.

It's good that your partners are on board with the fact that you may need to take time off. 

Please keep us updated on what happens.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,218
    • Most Online (within 30 mins)
      7,748
    MCAyr
    Newest Member
    MCAyr
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      My mo,ther married a bread making when I was 4

      By Scott Adams · Posted

      Your story is a powerful and heartbreaking testament to the profound damage that can be caused by undiagnosed celiac disease and the profound pain of not being believed or supported by family. It is sadly a common narrative within the celiac community to have suffered for years, even decades, while autoimmune conditions stack up, all while being dismissed. To answer your core question: yes, living in a environment with significant, constant gluten exposure, especially from airborne flour in a home where milling and baking occurred, would have created a perpetual state of autoimmune activation for you, even beyond the direct ingestion. This chronic exposure is strongly linked to the development and exacerbation of the very autoimmune disorders you describe—Migraines, Meniere's, Hashimoto's, and more. Your body was under constant attack, and the lack of care and understanding from your family compound that trauma significantly. It is not your fault. Many in the community share similar stories of a cascade of illnesses finally explained by a celiac diagnosis, often coming too late to prevent irreversible damage. While I cannot speak to the legal aspects of your inheritance situation, your experience with the medical neglect and the lasting impact of your childhood environment is deeply valid and shared by others who understand this unique type of suffering. Thank you for having the courage to share your truth. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      7yo struggling!

      By Scott Adams · Posted

      It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out" to "empowered choice." Instead of "you can't have that," use language like "we choose these safe foods so your tummy feels happy and strong." Involve her directly in her own care; let her be the "Gluten-Free Detective" at the grocery store, picking out exciting new treats, or make her the head chef in baking a special dessert that everyone gets to enjoy. When eating out, empower her by having her call the restaurant ahead to ask about safe options (with your help), making her feel in control rather than a passive victim. Acknowledge her feelings—"It's okay to feel sad that you can't have the roll, I sometimes feel that way too"—and then immediately pivot to a positive action, like unwrapping the special brownie you brought just for her. This combination of validation, involvement, and reframing turns a limitation into a shared family challenge where she feels supported, capable, and loved.
    • Scott Adams
      Rice Flakes

      By Scott Adams · Posted

      I know that Shiloh Farms makes this product, but I don't think it is labeled gluten-free.
    • Scott Adams
      Food Allergies

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      Diagnosis and further testing Celiac

      By Scott Adams · Posted

      It's strange to see two very different results in what appears to be a single blood test--one is positive and one is negative for a celiac disease test. Are these results separated by time? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...