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

Need Help, Still Feeling Yucky


celiaccecilia

Recommended Posts

celiaccecilia Newbie

Hi All,

I am new to the board. I was diagnosed by a positive endoscopy in August 2005. It has been a real rollercoaster for me. Shortly after going on the diet I felt fabulous. (no headaches, body aches, stomach aches, big D etc.). Then I would feel gross for a few weeks and then feel good for awhile and so forth. I have not felt good now for about 3-4 weeks and do not know what I am doing wrong. I have switched all my products...shampoos, etc. to gluten free to the best of my knowledge. I only eat things on the gluten free list I have, and even some of those I don't eat because they make me sick. Is it normal to feel this way while still being so strict on the diet? I couldn't get 2 feet from the toilet for about 12 hours yesterday. :o I have lost about 10 pounds in the last few months...don't know if that is because I don't dare eat or cause I don't digest. Went to the GI a few days ago, not too helpful, though I found out my iron level is about 50% what it should be. He wants to give me a blood transfusion in a few weeks if it doesn't come up. What do you think about transfusions?

What can I expect with this diet, disease? Could I have more allergies? Do you think I should keep doing what I am doing? Will I feel better soon? Is this normal? Would love to feel better again. Thanks for any replies.


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



Celiac.com Sponsor (A8-M):



Felidae Enthusiast

Have you tried eliminating dairy or soy. I was like you I felt great for awhile and then not so good and back on the Immodium again. But I have been better since eliminating dairy. I tried some cheese again last night for the first time in about a month and I was back on the toilet for this morning.

celiaccecilia Newbie
Have you tried eliminating dairy or soy.

Yes, I have eliminated dairy, but I haven't eliminated soy yet. Can eating dairy/soy make you have headaches, body aches, etc?

Rusla Enthusiast
Yes, I have eliminated dairy, but I haven't eliminated soy yet. Can eating dairy/soy make you have headaches, body aches, etc?

You could have sensitivities or allergies to dairy and soy and they can also cause those.You may be getting glutened and not know from where. I have been glutened yesterday and I don't even know how. I do know because of the reaction and the DH that I was glutened. I have not ate anything with wheat or gluten. So, you may be getting glutened by accident or the dairy and/or soy thing.

celiaccecilia Newbie
You could have sensitivities or allergies to dairy and soy and they can also cause those.You may be getting glutened and not know from where. I have been glutened yesterday and I don't even know how. I do know because of the reaction and the DH that I was glutened. I have not ate anything with wheat or gluten. So, you may be getting glutened by accident or the dairy and/or soy thing.

Yes, I could be getting glutened, as my family still eats lots of wheat. I will have to try eliminating soy and see if that helps.

Thanks.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,205
    • Most Online (within 30 mins)
      7,748

    Sarahmegan
    Newest Member
    Sarahmegan
    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
      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
      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
      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
      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
      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.