Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Could I Still Have Celiac?


shmlaura

Recommended Posts

shmlaura Newbie

hey all,

i am twenty years old and have had food problems since i was born. i was on a special rotational diet when i was a child, and was diagnosed with lactose intolerance, and a host of other allergies. As i grew up, i grew out of most of my allergies, but still had pretty bad digestive problems that have always been attributed to IBS. About three years ago i was diagnosed with Anorexia and as i have been on the road to recovery, trying to find foods that i had stopped eating, that would not make me sick now was a big issue. My mom suggested i go wheat free because as i child i had had a biopsy done, at 18 months, which came back negative, but as i have gathered from research, that does not necessairly mean i don;t have a problem. I have read research that eating disorders could help with the onset of diseases such as celiac because your body goes with out gulten for a long time, and then you try and reintroduce it, and your body just says no essentially. Well i have gone wheat free and my depression went away within two days, no joke, and i just felt so much better overall. I ocassionally "cheat" and will have crackers once a week, majority of the time i get sick, other times, my body doesnt seem to care. Sorry for the long history, but i would really like your opinions. My doctor has been of NO help, and i was wondering basically if i could still have celiac disease even though i can tolerate gluten once in a great while in a handful of crackers form. Thanks for your help in advance.

Laura


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



Celiac.com Sponsor (A8-M):



Dwight Senne Rookie

Hi Laura,

You say "wheat free" - is that the only gluten product you have avoided? If so, it is more likely that you have a wheat sensitivity, and not Celiac Disease.

If you are completely gluten free (meaning no wheat, rye, barley, oats, spelt, etc.) then it is my unprofessional opinion that you should not be gluten free right now. It will be very difficult to get a diagnosis if you remain gluten free.

I would suggest you take a two pronged approach if you are completely gluten free: First, start trying to slowly re-introduce gluten in your diet. Second, if you have not yet seen a gastroenterologist, go see one. If you have seen one, get a different one! Call around and find one who is experienced with Celiac. Inform him/her of your situation of being relatively gluten free so they do not waste a blood test on you right away. I'm thinking you will need to be on gluten for at least a month or two before the blood test can give accurate results.

Depending on those results and your doctor's impressions of your situation, you may then undergo an endoscopy to get biopsies of your small intestines. For that test, you may need to be on a gluten containing diet for several months!

It seems horrible to have to go through all of that, I know, but it is the only way to get an accurate diagnosis that will be legally and medically recognized.

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. - hmkr replied to hmkr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Celiac Test Results - Thoughts?

    2. - trents replied to hmkr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Celiac Test Results - Thoughts?

    3. - Scott Adams replied to hmkr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Celiac Test Results - Thoughts?

    4. - hmkr posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Celiac Test Results - Thoughts?

    5. - John Scott commented on dixonpete's blog entry in Pete Dixon
      5

      A video with researcher William Parker about Helminthic Therapy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,812
    • Most Online (within 30 mins)
      7,748

    hmkr
    Newest Member
    hmkr
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • hmkr
      The IGA tests 5 years ago were: Transglutaminase IGA (EMY IGA) (CENT-tTG), <2 Immunoglobulin A (CENT-IGA), 246 IgA Quantitative was done last month, that was 261. Is that the one you mean?  
    • trents
      When you say a GI doc did an IGA five years ago and it was negative, which IGA measure do you speak of. There are several possibilities. Do you refer to the tTG-IGA? Have you had a total IGA test done? It isn't a test for celiac per se but can establish whether or not you are IGA deficient. If you are IGA deficient, it will drive individual IGA test scores down and can result in false positives. The tTG-IGA should always be accompanied by a total IGA test. When people are IGA deficient and actually do have celiac disease we often see it detected by the IGG tests. The same can be said if they have been skimping on gluten previous to the blood draw and, IMO, negatives in the IGA test spectrum with positives in the IGG spectrum can also point to NCGS or NCGS transitioning to celiac.
    • Scott Adams
      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. I agree that if your biopsy ends up negative, that you still may need to be gluten-free, as you could be in the non-celiac gluten sensitivity area. 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. Be sure to eat lots of gluten daily until your endoscopy, otherwise you could get false negative results.    
    • hmkr
      I had several celiac blood tests done at a rheumatologist last month. I've had many possible symptoms over the last 23 years, including GERD/LPR, constipation, and recently joint stiffness and pain in my hands. It all started during my first pregnancy. 1/160 ANA back then as well as now with no autoimmune diagnosis. I've had undiagnosed high fevers, swollen lymphs nodes, ear pain, miscarriages, to name just a few more symptoms. I can't help but be upset at the many doctors I've been to that have missed this. A GI doctor only did the IgA 5 years ago, which was negative then too, and didn't do a biopsy as a result during an endoscopy shortly after. Deaminated Gliadin IgG Antibody test was 90, >15 being abnormal.   Deaminated Gliadin IgA Antibody, negative Tissue Transglutaminase IgG Antibody, negative Tissue Transglutaminase IgA Antibody, negative I'm scheduled for a biopsy at the end of January. The new GI doctor thinks if not celiac, I will still need to be gluten free the rest of my life due to the antibodies my body is producing. I feel like it's got to be celiac. I've been consuming gluten every day to prepare for this test. It can't come soon enough.  Thoughts on that IgG being positive and the others negative? I haven't gotten a clear explanation for that yet. Thanks in advance for any input!! 
    • Kiwifruit
      That’s good to know. Might be time to head back to my gastrointestinal doctor then.
×
×
  • Create New...