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. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

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

    • Total Members
      132,813
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
×
×
  • 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.