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

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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents commented on Scott Adams's article in Kids and Celiac Disease
      2

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

    2. - Russ H replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Positive biopsy

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

      Positive biopsy

    4. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New "Glowing Bacteria" Pill Could Transform Gut Disease Detection (+Video)

    5. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

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

    • Total Members
      133,001
    • Most Online (within 30 mins)
      7,748

    bonniebeebe143
    Newest Member
    bonniebeebe143
    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

    • Russ H
      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
    • Scott Adams
      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. 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.    
    • trents
      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
×
×
  • 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.