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 Diagnosis


tlison2

Recommended Posts

tlison2 Newbie

Hi. Had endo and colonoscopy 2 wks ago for something else.  Showed Celiac on biopsies. Dr sent me for bloodwork and told me to start gluten-free now. 

Wondering if bloodwork comes in negative if things could change. Seeing her again Wednesday. Nurse said it’s not likely to change as biopsy says Celiac, and we will prioritize the Celiac then worry about the other stuff when I see doctor. 

Just curious. Thanks for any input.


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



Celiac.com Sponsor (A8-M):



Judy3 Contributor

I highly doubt that the diagnosis will changed based on the blood work.   They've already diagnosed with biopsy which is the 'gold standard'.   My blood work was negative as I was too sick to eat much but my genetic testing and the endo biopsy proved Celiac.    Gluten free 7 yrs here.   

Victoria1234 Experienced

It probably won't change either way the blood work goes. The endo is the gold standard of celiac dx. 

Do you have any symptoms? 

And welcome! We are a great group of people, albeit a bit slow on weekends. 

Feel free to ask away, and post your test results if you need help :)

Ennis-TX Grand Master

Welcome, you probably need to check out the newbie 101 section, there is a bit of a change, and clean out phase but pretty easy. It might seem a bit overwhelming at first but quickly becomes second nature to check labels, and stick to certain products. Few other limitations but you learn and adapt and just have to do some things differently. We do suggest a whole foods only diet at first to boost healing. We also suggest dropping dairy and oats for the first few months. So if you had any other symptoms we can help you out with. Many are nutrient deficiency related, some you might not even notice as they have been your "normal" for so long. But you will find a new life opening up as you heal.

Few helpful links
https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/119661-gluten-free-food-alternative-list-2017/

cyclinglady Grand Master

Even if your complete blood panel (TTG, DGP and EMA) is negative, that does not mean that you do not have Celiac disease as some 10% of celiacs are seronegative.  Trialing the diet will help confirm a diagnosis.  Your doctor may order a genetic test.  There are other things that can cause villi damage: 

Open Original Shared Link

 

tlison2 Newbie

Thank you for replies. Most of our food is okay already, but I cleaned out flours, spice blends, etc, checked all labels. Restocked almost all of that. Loaded up my normal go to fruits/veggies and located gluten-free bread, breakfast, lunch, dinner, and snacks to help until I get the hang of different flours, bread and sauces. 

I do have diverticulosis, gastritis, reflux, possibly an ulcer to contend with. Some polyps and lipomas removed. Chronic complex migraine, hair loss, and osteoporosis. Might be better if I could sleep at night, but I sleep better during the day. I’m a hot mess right now. 

A few days in, and I do feel a little bit better. Not much pep yet but not in fetal position or running to bathroom either. 

Its a little overwhelming!

Thank you again!

 

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. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,816
    • Most Online (within 30 mins)
      7,748

    KTH
    Newest Member
    KTH
    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

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.