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. knitty kitty
      - knitty kitty replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      36

      Blood results

      @Heatherisle, Has your daughter been checked for vitamin and mineral deficiencies? A combination of Thiamine Hydrochloride (or Benfotiamine) and B12 and Pyridoxine B6 relieves pain as well as over-the-counter pain relievers. What sort of food does she eat on the GFD? Many gluten free processed foods?
    2. knitty kitty
      - knitty kitty replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Confused about HLA-DQ Celiac gene test result

      Your doctor is incorrect! Your positive DQB1*02 is all you need to develop Celiac disease. Just having one copy is sufficient to develop Celiac. Reference: Carrier frequency of HLA-DQB1*02 allele in patients affected with celiac disease: A systematic review assessing the potential rationale of a targeted allelic genotyping as a first-line...
    3. Scott Adams
      - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      9

      Pain in the right side of abdomen

      I can see why she’s worried, especially with a history of ovarian cysts, but it’s also very common for healing after a celiac diagnosis to take time. Even when someone is doing their best gluten-free, it can take months for inflammation to calm down, and bloating, abdominal pressure, and even back discomfort can flare during the adjustment period. The upc...
    4. Scott Adams
      - Scott Adams replied to science enthusiast Christi's topic in Coping with Celiac Disease
      2

      Sugar intolerance 10 years into gluten-free diet

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The...
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Insomnia help

      PS... I help care for someone in their 90s, albeit part time, but have just been in hospital for a while with him and it has reminded me, even for someone in better physical shape, which I am now, thankfully, it can be very tough on one's health/sleep/mood. I think what I am trying to say is you are going through a lot all at once, it is not surprising that...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,465
    • Most Online (within 30 mins)
      7,748
    Dferares
    Newest Member
    Dferares
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Blood results

      By knitty kitty · Posted

      @Heatherisle, Has your daughter been checked for vitamin and mineral deficiencies?   A combination of Thiamine Hydrochloride (or Benfotiamine) and B12 and Pyridoxine B6 relieves pain as well as over-the-counter pain relievers.  What sort of food does she eat on the GFD?  Many gluten free processed foods?
    • knitty kitty
      Confused about HLA-DQ Celiac gene test result

      By knitty kitty · Posted

      Your doctor is incorrect! Your positive DQB1*02 is all you need to develop Celiac disease.  Just having one copy is sufficient to develop Celiac.   Reference: Carrier frequency of HLA-DQB1*02 allele in patients affected with celiac disease: A systematic review assessing the potential rationale of a targeted allelic genotyping as a first-line screening "...importantly, a comparable risk of celiac disease development was present in individuals carrying a double dose of HLA-DQB1*02 alleles, no matter the paired HLA-DQA1 alleles." And... "If we could consider a mass screening looking for the carrier status of HLA-DQB1*02 only, we may identify 95% of celiac disease predisposed patients and, concomitantly, rule out (with no more than a 5% error) the lifetime risk of disease in 60%-70% of the general population: These non-predisposed individuals should never receive the serological screening, unless any consistent clinical symptoms appear at some point of the existence without any other explanation." https://pmc.ncbi.nlm.nih.gov/articles/PMC7109277/ Classical celiac disease is more frequent with a double dose of HLA-DQB1*02: A systematic review with meta-analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC6375622/ Also, the Malabsorption of Celiac can cause low B vitamins (and minerals) that are related to poor oral health. The Role of Vitamin B Complex in Periodontal Disease: A Systematic Review Examining Supplementation Outcomes, Age Differences in Children and Adults, and Aesthetic Changes https://pubmed.ncbi.nlm.nih.gov/40218924/ Best wishes for your Celiac journey!
    • Scott Adams
      Pain in the right side of abdomen

      By Scott Adams · Posted

      I can see why she’s worried, especially with a history of ovarian cysts, but it’s also very common for healing after a celiac diagnosis to take time. Even when someone is doing their best gluten-free, it can take months for inflammation to calm down, and bloating, abdominal pressure, and even back discomfort can flare during the adjustment period. The upcoming dietitian visit is a great step, since hidden gluten exposure or nutritional gaps can sometimes contribute to ongoing symptoms. That said, if the pain is persistent, worsening, or feels similar to her prior cyst symptoms, it’s reasonable to mention that to her doctor for peace of mind. It’s not uncommon for multiple things to overlap, so checking both GI and gynecologic angles can help rule things out and reduce anxiety while her body continues healing. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.    
    • Scott Adams
      Sugar intolerance 10 years into gluten-free diet

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • cristiana
      Insomnia help

      By cristiana · Posted

      PS... I help care for someone in their 90s, albeit part time, but have just been in hospital for a while with him and it has reminded me, even for someone in better physical shape, which I am now, thankfully, it can be very tough on one's health/sleep/mood.  I think what I am trying to say is you are going through a lot all at once, it is not surprising that you are not feeling 100 per cent. Even if we love our relative to bits, and they love us, they often can't understand that we too have lives, and need to keep our houses, families and jobs in running order. Something has to give, but it's often the carer!  When an elderly loved one is resistant to change, it makes things even more exhausting.  Often it has taken a crisis for me to be able to introduce the help that has actually been needed for so long.  It sounds as if you are doing an amazing job but can you get any support from any carers associations or other groups where you live, which might help?  
×
×
  • 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.