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

Rules To Live By So You Can Avoid Getting Glutened


Lisa16

Recommended Posts

scribewo Newbie

I just recently realized that calling the manufacturer trumps internet research. When you are considering a product to buy, calling the company right there in the grocery store to check means you have the latest info. The call usually takes about 1-2 minutes. Some of my internet research meant looking at posts that were YEARS out of date. If you prefer to rely on internet research, make sure you go to the manufacturer's website and check the date it was late updated.

For newbies, I would also recommend you start your journey with figuring out what you will miss first. I knew that I would miss pizza and brownies, so I figured those out first. There are some GREAT gluten-free brownie mixes out there! My nutrition improved exponentially and I now cook gluten-free for myself and my daughter all the time, bake my own alternative flour breads and graham crackers. All that came with time. At first, I really needed to stick with what was familiar to me from my gluten-eating days.

Breakfasts are hardest at first, because I think that is when the gluten-eating world eats the most gluten. Try straight ahead substitutions, like teff cereal in place of hot cereal or make gluten-free muffins from a mix. Expand from there.

I don't know if this was the case with every celiac, but I spent the first two month of my diagnosis really hungry all the time. Know that that will pass as you figure out how to get fiber without wheat.

I found that social events are easy if you keep talking as the focus and keep something to drink - like a bottled water - in your hand. There is something about seeing hands without something in them that makes hosts or host-in-waiting to feel they need you to get a snack from the refreshment table.

For restaurants, I eat ahead, even if it is one or two cold baked potatoes from my purse while I'm in the parking lot (no kidding!) and just have wine while everyone else eats.

  • 4 weeks later...

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



Celiac.com Sponsor (A8-M):



Nancy J Newbie

Just because you wish it were gluten-free, doesn't make it so. Go with your "gut instinct". Even if the label doesn't list wheat products, if it seems like it would/should have wheat, hold off on it until you can call the manufacturer.

Even if it doesn't contain wheat, it may contain barley, because barley isn't one of the ingredients that has to be listed no matter how small the amount.Some manufacturers list barley in any amount, but not all do.

Nancy J Newbie

But that can't be true. Because I ate some Safeway seasoning that made me super sick and it didn't say "wheat" on it, but it did have "spices" in it and when I called they said it contained gluten. You can't get away from the hidden gluten in labeling where it's used as a thickener or binding agent. They should be required to specifically cite "gluten" on labeling, not just "wheat". I don't think the rules are strict enough.

Barley may not be listed if the amount is "small".

Nancy J Newbie

If you have pets and you are feeding them regular pet food, be very careful. Scrub your hands and fingernails or use gloves. Be careful not to stick your arm in the bag and get crumbs on your sleeve. Better yet, get someone else in the family to feed them. Be careful about hugging them or letting them lick you or especially letting them lick a child who needs to be gluten free.

Be careful about kissing your sweetie who may have just had cereal or a sandwich.

ang1e0251 Contributor

Always, always take your own food. That means to social events, family gatherings and restaurants. Nothing is worse than arriving and finding nothing safe to eat. It's OK if you take your own food and then don't need to eat it. But it's hell to be starving and everyone is eating and drinking and laughing around you.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,208
    • Most Online (within 30 mins)
      7,748

    Gail Brown
    Newest Member
    Gail Brown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.