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

Frustrated!


kkkkaty

Recommended Posts

kkkkaty Rookie

I was diagnosed with Celiac in August and at first I ate only fruit, veggies, rice and little else but slowly I've discovered lots of great things to eat. But I haven't been feeling very good for awhile now- I have more headaches, bad sleep, general achy-ness.My stomach is much better but not entirely right. I think I eat well, take vitamins, run 4-5 days week..I should be feeling great. I just got back from the holidays with family and, as far as I know, ate nothing bad. But I felt terrible. I spent a bunch of time on this board looking for clues and came up with a whole list of things I may be doing wrong- toaster, lipstick, shampoo- to name a few. I am feeling so overwhelmed by this right now- Should I have dedicated wooden spoons, cutting boards, other? Maybe I expected this process to be easier or faster.I have always had an excellent attitude about this but I'm sooooo frustrated!


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Welcome to the group!

I'm sorry you're having such a frustrating time :(

Have you considered that you might have another food intolerance or another autoimmune disorder? I felt even better after I stopped eating corn. Plus, I think once you're off gluten it becomes easier to recognize other things that might be going on in your body...

A book that I've found helpful is "The Autoimmune Connection" by Rita Baron-Faust and Jill Buyon. It's well-organized, scientific and provides lists of symptoms and related disorders. For example, here are some disorders that turn up in a lot of people with celiac disease:

- type I diabetes

- thyroid disease

- Sjogren's syndrome

- primary biliary cirrhosis

- myasthenia gravis

- pernicious anemia

I would look through the book and see if anything fits your symptoms. Then, if you're not completely sick of doctors... go ask for some tests.

gfpaperdoll Rookie

You are probably getting cross contaminated, are you still cooking for other whith wheat flour. Still cutting your apples on the same wooden cutting board that you used for wheat bread?

check out the cross contamination threads. & be careful about the gluten free goodies that you are eating, especially the ones that are manufactured in places where they have wheat etc.

kkkkaty Rookie
You are probably getting cross contaminated, are you still cooking for other whith wheat flour. Still cutting your apples on the same wooden cutting board that you used for wheat bread?

check out the cross contamination threads. & be careful about the gluten free goodies that you are eating, especially the ones that are manufactured in places where they have wheat etc.

Thanks for the reply. Are you saying that one should not cook with wheat for other people? I make cookies, cake, pancakes, etc. for my kids - is that considered risky? I understand the idea of dedicated tools and dishes and I'll be paying attention to that immediately. Please clarify about the cooking...Thanks.

SGWhiskers Collaborator

The airborne flour and baking mixes are a no, no for us. It is easy for us to inhale bits of flour and the reaction can sometimes be more or less severe. Then the flour dust falls to the countertops later in the day, and we can cc ourselves again. I've switched to using gluten-free mixes and hubby does not seem to mind a bit. We also have store bought goodies in the kitchen for him. I'll handle the gluten items if I must, but I avoid it most of the time because I'm still getting mystery glutenings.

I hope all your new information helps you feel better.

SGWhiskers

mbrookes Community Regular

There are so many gluten-free cookbooks and recipes available that I cook only gluten free for my family and guests. Nobody knows the differeence, except that there is no bread. In fact, I just had my family here for Thanksgiving and served all gluten free food, even desserts. Everyone raved!

Just tell your family that this is something you have to do to stay healthy. There will be no more gluten cooked in your kitchen. They can eat all the gulten they want when they eat away from home.

This may sound selfish, but what good are you to them when you are sick?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748

    Betty Siebert
    Newest Member
    Betty Siebert
    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

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • 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.    
×
×
  • 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.