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
lbonnell
Posted

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
Lisa
Posted

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
lbonnell
Posted
  • Author

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
breann6
Posted

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
CarlaB
Posted

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
Rebecca47
Posted

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
GFBetsy
Posted

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
clhsc
Posted

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

breann6 Contributor
breann6
Posted
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.

Go to topic listing

  • 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
      - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies...
    2. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted...
    3. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Have you had your 25(OH)D vitamin D blood level checked? Vitamin D deficiency occurs in 40 - 60% of western societies. It is even more common in Celiac Disease because of malabsorption syndrome. Appropriate intake of vitamin D or skin production from sun, increases the absorbtion rate of Calcium.and phosphorus, two minerals crucial to...
    4. Wheatwacked
      - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Some backup to my statement about gluten and milk. Some background. When my son was born in 1976 he was colicky from the beginning. When he transitioned to formula it got really bad. That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease...
    5. trents
      - trents replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,387
    • Most Online (within 30 mins)
      7,748
    LizzieE
    Newest Member
    LizzieE
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
    • trents
      Shingles - Could It Be Related to Gluten/ Celiac

      By trents · Posted

      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
×
×
  • 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.