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

Dealing With Ups And Downs Of The Disease.


Nettie

Recommended Posts

Nettie Newbie

I sometimes get rather frustrated. I love food and well, as we all know, it doesn't love us. I have issues with not being able to eat normally and sometimes I get overwhelmed with it all. I have symptoms on a daily basis and afraid to eat anything because of the horrible symptoms I have. Please someone help me....


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

It seems like there are two issues here:

1) the emotional/psychological challenge of what it takes to eat gluten-free in a gluten-eating culture

2) you still don't feel well

Starting with 2)...

Are you completely gluten free? If not, that's probably why (but that's also something you already know). If you think you are, it's worth double checking EVERYTHING that makes contact with your mouth - that includes lipstick if you wear it or are every kissed by someone who does. If you've done that, it's worth checking into secondary food intolerances, like dairy or soy (or many others), that you may find you need to eliminate, or just reduce or avoid for a short time before reintroducing in smaller quantities.

Can you give us a little more information on what you eat, how confident you feel in the foods you're picking and in avoiding cross contamination, and your symptoms?

As for 1)

You don't have to give up your love for food just because you're on this diet. If you're just gluten free, there are only four items you have to avoid - wheat, barley, rye, and (depending on you) oats. Rather than thinking of it as what we are taking out, look at all the options you have! Out of every edible food on the planet, that leaves us with a lot of choices! There are still an awful lot of grains we can eat (amaranth, quinoa, rice, corn, buckwheat, millet, teff, sorgum - more that I'm sure I'm forgetting). There isn't a single fruit or vegetable denied to us (until you start talking about other food intolerances, but there is a MYRIAD of edible fruits and vegetables). And fruits and vegetables can make a huge variety of dishes - from root vegetables to leafy vegetables to tree fruits to berries... There is a wide variety of meat if you eat it. (I can get chicken, turkey, (other birds), pork, beef, buffalo, and lamb fresh at Whole Foods - ostrich and venison frozen, then there's specialty places that can get you other things as well). There's a cornucopia of fish, depending on where you live more or less of it available fresh. And then there are beans and legumes (so many varieties of beans and lentils) and nuts and seeds. And oils and herbs and seasonings and teas... (I could go on, but I think you get the idea. ;) )

It's really a change in mindset, but there's nothing wrong with that! Since this is something you need to do for your body, figure out the way to do it BEST! And TASTIEST! That may mean more cooking, or it might just mean getting really creative with using whole ingredients really easily so there isn't a lot of cooking to be done. Yes, eating out at random isn't the same. But that doesn't mean you can't explore food; you just are now exploring a different part of the gastronomic world! (And we're all here to help. And, yes, commiserate that sometimes, it really is overwhelming and annoying and aggravating to be "different". But - *shhhh* - we're all different from everyone else. :P:lol:)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams commented on Scott Adams's article in Product Labeling Regulations
      2

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    2. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      nothing has changed

    3. - Scott Adams replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Is it gluten?

    4. - Seaperky replied to lizzie42's topic in Traveling with Celiac Disease
      2

      Trip to Anaheim/Disney

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748

    Bea71
    Newest Member
    Bea71
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.