Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Help For A Newbie


lbonnell

Recommended Posts

lbonnell Newbie

Hello, I have been watching for some time and decided I need help! I have had some kind of autoimmune problem for many years. Every test came out negative. I recently (because of this site) asked a Doc to do a celiac test which presented as "neg" (in his words, don't have the details). I have gone gluten-free on and off and feel great. When I eat gluten, I blow up like a balloon, my abdomen swells to about three times its size. My throat burns, I itch and become very "foggy". I am seeing a new Doc very soon and would like to know what to ask her. If I do not have celiac, I am sure I have at least an allergy. I struggle with gluten free, I know I need to expand my foods. I get bored eating the same things and end up going back to bread. Any help is appreciated! I am 42 years old and am trying to be the healthiest person I can be.

Thanks!

Lisa


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Welcome Lisa.......there are many Lisa's here.

If you are going to a new doctor soon, I would suggest that you stay on a gluten diet. Providing that you are going to be tested, by way of blood test. If you eliminate gluten from you diet now, you will not have an accurate test. What testing have you had done?

If you have already have the testing done. Try being totally gluten free and see how you feel. It may take some time to feel better. I have been gluten free (as best) for about a year and a half, and I still have some ups and downs.

If you have been reading here, there is more to be gluten free than staying away from breads and pastas. Gluten is in a great deal of things.... lotions, creams, lipsticks, toothpaste (?), shampoo.....

If you do have Celiac Disease, you have it for life. A gluten free lifestyle is the cure.

If you are tired of eating the same thing, this site has the most wonderful recipes. Please search this site and there are boundless options for wonderful dining, gluten free and delicious.

lbonnell Newbie

Thanks for your response! I actually had a Dr. appt today. She was WONDERFUL! She is testing (blood) tomorrow. She did day that I need to remain gluten free, regardless of the test because it may not show anything. She also recommended a support group. I was very pleased, all other Dr.s dismissed me. I went out and bought some gluten-free flours. I wanted to ask if Guar Gum is the same as Xantham (sp?) gum to use in recipies.

Thanks Again

Lisa

breann6 Contributor

good for you, and good for your doctor. sounds like your feeling better off gluten from your first post so thats telling you something. hopefully you continue on getting better and expanding your diets. i love how i eat more fresh fruits and veggies....im feeling better all the time and i'm only at a bit over a month....drink lots of water during the beginning too. Try and cut back on the processed foods at first too and see if that helps, it helped me a lot...

take care!

Breann :)

oh and welcome to the board!!

CarlaB Enthusiast

Lisa, welcome!

If you feel better gluten-free, then stay gluten-free, as your doc said. I also feel better gluten-free, but testing does not show I have a problem with it.

There are some pretty good breads out there .... EnerG and Kinnikinnick. They get better the longer you've been away from "real" bread!! :P They are also better toasted or microwaved.

Tinkyada makes great pasta.

If your health problems go away gluten-free, then stay gluten-free. If you still have some problems but feel better gluten-free, then stay gluten-free and keep looking for what else is wrong .... some of us who are non-celiac gluten intolerant have other health issues that may or may not be causing the food sensitivities ... some just feel better off gluten and have no other problems.

Rebecca47 Contributor

Hi Lisa, If you think its apropriate I would also suggest that you have a bone density test. If you haven't alreay asked her about it. My doctor had one done on myself , because of all the years of not absorbing calcium and vitamin D etc. :) It gets better seems like it takes forever.

GFBetsy Rookie

Guar gum does the same thing as xanthan gum, and I understand that it can be substituted teaspoon for teaspoon in recipes.


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



Celiac.com Sponsor (A8-M):



clhsc Apprentice

Where can you find Tinkyada pasta? Can you order it online?

breann6 Contributor
Where can you find Tinkyada pasta? Can you order it online?

i get it at Whole Foods, or at Nutrition Depot- you can also buy it online. there is typically a small selection of gluten free pasta's in our Natural Foods section at Kroger or Publix but they aren't as good as Tinkyada pasta in my opinion.

~breann :)

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,362
    • Most Online (within 30 mins)
      7,748

    NAC
    Newest Member
    NAC
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...