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

New With All This....

upwitht21

By upwitht21
in Coping with Celiac Disease

Recommended Posts

upwitht21 Rookie
upwitht21
Posted

Hi everyone!

I have been lurking and reading everyone's posts and decided it was time to finally introduce myself. I was diagnosed about a month ago with celiacs by blood test, I opted not to do the biopsy as my levels were high enough that I was convinced. I am still in a bit of shock over it as I have family members with it and I'm don't even have close to the same symptoms. (totally clueless how many symptoms there are) my biggest complaint was I had chronic bone pain, a day didn't go bye that I didn't hurt after diagnosis I started reading and realized I have loads of symptoms! From fertility problems to brain fog....geez who knew!

My oldest child (he's 9 and has down syndrome) was also diagnosed with in a week of me so the changes in our house were quite dramatic. This site has been such a huge blessing and the information here is amazing.

I'm learning knew things every day so if anyone has any tips or just general advice I would greatly appreciate it.

Thanks so much

Jessica

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

Celiac.com Sponsor (A8-M):


AVR1962 Collaborator
AVR1962
Posted

Welcome! I think you will be amazed what all you will connect with celiac as you start to aliminate it from your diet. The more you read, the more you will realize that this has been the root of many of your health issues for quite sometime. I know it really changed my reality, the way I looked at the past and even my future. However, you will start to feeling better and you will finally be able to enjoy a life that you have been denied from the past. There is a great deal of knowledge here, don't be afraid to ask questions. We're all a little different just like you mentioned about your own family but someone here is going to know what you are dealing with. Best to you and the family.

MenHen Rookie
MenHen
Posted

Welcome! I am a newbie, too! Congratulations on finding out what was causing you problems. Good luck with your new life! My biggest piece of advice is to always have something easy and on hand to eat, whether at home or away from home. That helps you cope with it so much better.

upwitht21 Rookie
upwitht21
Posted
  • Author

Thanks for the warm welcome! I feel so lucky that there is such awesome support.

Roda Rising Star
Roda
Posted

Welcome. It is a big change, but with time you and your son will feeling well. I was wondering if your doctors did any vitamin and mineral lab tests? Too often we are deficient in quite a few. If there is concern for bone loss(due to not absorbing vitamin d) a bone mineral density test is requested.

upwitht21 Rookie
upwitht21
Posted
  • Author

Other then telling me I had celiacs and to go on a gluten free diet my doctor didn't say to do anything else. We live In a very rural area and the medical care is far from stellar. It took me over 2 years to get diagnosed, I asked numerous doctors if I should get tested and they said I didn't have any of the "right" symptoms even though I have 4 cousins who have it. Just kept wanting me to take narcotics for the pain which I flat out refused.

What are things I should be doing? Both for me and my child....

Thanks so much!

quincy Contributor
quincy
Posted

Other then telling me I had celiacs and to go on a gluten free diet my doctor didn't say to do anything else. We live In a very rural area and the medical care is far from stellar. It took me over 2 years to get diagnosed, I asked numerous doctors if I should get tested and they said I didn't have any of the "right" symptoms even though I have 4 cousins who have it. Just kept wanting me to take narcotics for the pain which I flat out refused.

What are things I should be doing? Both for me and my child....

Thanks so much!

glad you were finally diagnosed (dx'd). I was dx'd in april 2010 and I had bone pain in my ribs, lumbar spine and hip and it turns out I had bone density loss in all of those areas. I would advise you find a GI doctor to test you for vitamin definciencies. If you are experiencing bone pain, I would recommend a bone density scan, but if that is not feasible then begin a regimen of vitamin D3 with calcium every day. Taking a good multivitamin is a good start as well. Just make sure its gluten free. many of the major brands are gluten free such as Nature Made

My brother had to lie to his doctor in order to have a celiac panel run and my sister's doctor told her it wasn't necessary because she didn't have diarrhea!!

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

Celiac.com Sponsor (A8-M):


upwitht21 Rookie
upwitht21
Posted
  • Author

Thanks for the input I will look into a gi specialists after the new year. I already take vitamin D along with a prenatal vitamin, my diagnose actually was made because my doctor (who left our clinic and then came back) made the connection with it and us not being able to get pregnant after 2 years of trying and I don't even know how many cycles of fertility meds. My bone pain has gradually gotten better as the weeks have gone by eating gluten free. I've started doing yoga instead of weight lifting hoping to not tax myself quite as much.

I think my family is still a little numb to the whole it's forever thing lol!

Thanks!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,208
    • Most Online (within 30 mins)
      7,748
    Gail Brown
    Newest Member
    Gail Brown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  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.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      CT with contrast.

      By Scott Adams · Posted

      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      New labs are now very elevated

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.