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

Grain Discomfort


PaulaHayden

Recommended Posts

PaulaHayden Newbie

Hi, I am 40 and have celiac. Three of my 4 children and my grandson are also celiac.

The issue that I am having as I grow older is with celiac friendly carbs. The gluten free breads and grains cause me stomach pain and esophageal spasms! I am fine as long as I eat an Atkins style diet...potatoes are okay but no other carbs. Does anyone else have this issue? It is as painful as eating gluten. Paula


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



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

Yes, I do not eat grains, I mostly eat Paleo diet. Occasionally I will have cornbread with cornmeal & corn flour, that I make myself with coconut milk in place of milk. I keep posting that I do, but I have not had any now since Thanksgiving... :) I seem to not want the grains now, I am happy eating my regular diet. I even recently mostly gave up rice. I never cook it at home anymore. I will eat a little at Pei Wei etc. I am also dairy free & corn syrup free, & soy free. & I stay away from additives. I eat a lot of seafood, meat & veggies, & fruits & nuts. I do occasionally have white corn tortillas, but not everyday & not more than once a week. I am very healthy & energetic...

I rarely eat any of the gluten-free grains, & totally cannot tolerate tapioca, bean flours, soy flour, potato flour and potato startch. & I hate the gritty rice flour.

for special occasions like birthdays or Christmas I will indulge in something homemade maybe chocolate chip cookies, with dairy free chocolate chips. I use sorghum flour, corn flour & homemade nut flour.

I think that almost all those grains are cross contaminated to some degree & I am very sensitive. I also think that really grains are not good for me. I encourage you to check into the Paleo way of eating. It is really the healthiest way to eat. You develop new favorite foods, at the moment mine is fresh pineapple & blueberries. I also like broccoli with oranges or pineapple or tomatoes. I think broccoli is good with anything "juicy".

my lunch for tomorrow, that I just packed is baked chicken, olive oil & vinegar dressing with herbs, to dip the veggies in, broccoli, tomatoes, carrots, dessert is pineppale, blueberries, banana, snack is nuts & apple.

darlindeb25 Collaborator

I too, stay away from grains--soy and corn were the next intolerance's after I went gluten free. I can't have potatoes either. I too, stayaway from rice, except for my ricecakes, which seem to be ok for me. We celiac's are not all created equal. Some can give up gluten and live quite happily. Some of us give up gluten and dairy and do quite well. The lists goes on and on. My list of what I can and can't have has seemed to stablize finally, and now I have to figure out how to get the right nutrients back into my system so that I have a healthy balance going on. :huh:

dbmamaz Explorer

I quickly discovered that tapioca, which is in almost every gluten-free product and recipe, was almost worse for me than gluten. The last time I had tapioca (in frozen rice dream) I was in pain for over a week. I just had some tests come back with a medium reaction to rice! The only grains in my 'green' section were corn, millet and buckwheat. I tried making some millet flat-bread today, but it came out more like a flat pancake lol! Giving up rice in addition to wheat and dairy is kinda daunting!

Molecular Dude Apprentice
I quickly discovered that tapioca, which is in almost every gluten-free product and recipe, was almost worse for me than gluten. The last time I had tapioca (in frozen rice dream) I was in pain for over a week.

I'm like you! I love Chebe breads, but they have virtually the same effect on me as regular wheat bread products! The same with all gluten-free products that have tapioca as a major ingredient -- go figure.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,671
    • Most Online (within 30 mins)
      7,748

    Paul1567
    Newest Member
    Paul1567
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. 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.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.