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

Initial Diagnosis A Possible Gluten Problem?

songstressc

Recommended Posts

songstressc Apprentice
songstressc
Posted

Hi Everyone, I am new here - learning to use post etc. My diagnosis is a maybe Gliadin count is 11. I am hoping some of you could share your histories and diagnosis. Were you diagnosed as a maybe and indeed were Gluten Intolerant? It is such a dramatic life

change - It would be great to hear if indeed I could be on the right track. Are you feeling better now?

Thanks for sharing :)

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I had two family members who were only one point into the postive range on testing and went gluten free and saw a surprising difference in a number of issues. As for myself I never showed postive on a blood test and it was a real struggle to get diagnosed since the doctors would see the negative blood work and considered that negative to be a firm diagnosis that I didn't have celiac. The reality is that up to 30% of us show up negative on the blood tests even at the end stages. I was one of them. I was finally diagnosed 6 years ago and well my signature says it all. You have nothing to lose by trying the diet strictly for a couple of months UNLESS you are going to have an endo and biopsy if that is in your future do keep eating gluten until the biopsy is done.

GFqueen17 Contributor
GFqueen17
Posted

i had GI problems for yearssss and my mom is celiac so she suggested i try going gluten free. i didn't think of getting a blood test first, i just went gluten free right away...and i felt much, much better! i did end up getting a blood test after about a week of being gluten free but of course it came back negative. i am not willing to go back on gluten just to get an accurate blood test. i know that every single time that i accidentally get contaminated with gluten, i get very, very sick...and that is all i care about.

Mother of Jibril Enthusiast
Mother of Jibril
Posted
It is such a dramatic life change.

I went gluten-free on the recommendation of an allergist and I felt SO much relief from my abdominal pain. There was no way I wanted to try the "challenge." I could already tell that gluten was doing bad things to my body. That being said... at first I was hoping I was just a "little" intolerant. That maybe I wouldn't have to be paranoid about cross-contamination, lip balm, using the same toaster as my husband, etc... That's what my first post was about ;) Now that I've learned more, I really see the benefit to going gluten-free 100%. I feel great and I honestly don't crave gluten and dairy anymore! A bit of real ice cream would be nice, but I can live without it. I don't feel deprived. There are SO many good things to eat if you take the time to cook and explore new areas of the grocery store. People on this forum are wonderful about offering their advice and recipes :P

Welcome to the group!

songstressc Apprentice
songstressc
Posted
  • Author
I had two family members who were only one point into the postive range on testing and went gluten free and saw a surprising difference in a number of issues. As for myself I never showed postive on a blood test and it was a real struggle to get diagnosed since the doctors would see the negative blood work and considered that negative to be a firm diagnosis that I didn't have celiac. The reality is that up to 30% of us show up negative on the blood tests even at the end stages. I was one of them. I was finally diagnosed 6 years ago and well my signature says it all. You have nothing to lose by trying the diet strictly for a couple of months UNLESS you are going to have an endo and biopsy if that is in your future do keep eating gluten until the biopsy is done.

Thank you Ravenwoodglass for sharing - I really appreciate it. I feel better just chatting to someone - -ahh so many comfort foods gone! :huh: Your story is amazing- I was at the ND today and she said it is not a maybe and explained the false negative test that happens often. had to laugh as when I asked her to check my husband's gliadin - he was higher than me! Love the quote!

thanks,

songstressc Apprentice
songstressc
Posted
  • Author
i had GI problems for yearssss and my mom is celiac so she suggested i try going gluten free. i didn't think of getting a blood test first, i just went gluten free right away...and i felt much, much better! i did end up getting a blood test after about a week of being gluten free but of course it came back negative. i am not willing to go back on gluten just to get an accurate blood test. i know that every single time that i accidentally get contaminated with gluten, i get very, very sick...and that is all i care about.

thanks for sharing - I wonder how long it will take for my son to to change his ways? He has the same GI probs as I do. I asked the ND today if my count is higher or lower depending on what I have eaten and she said it does not make a difference and that most people have a false negative test. Oh well, carpe diem!

lizard00 Enthusiast
lizard00
Posted

I'm in there with ravenwoodglass... I could be half dead and NEVER have positive celiac blood tests. Although, I am diagnosed.

A reaction is a reaction, whether it's a huge amount over the range, or just one or two points. Making antibodies to gluten doesn't happen if gluten is not a problem for you. Your ND is exactly right, false negatives are unfortunately not all that uncommon.

I can honestly say that I do not miss gluten at all! When I see it, it looks like poison to me. The only deprivation I have felt was a year ago when my life was passing me by. I discovered gluten to be a problem, and I ditched it and never looked back. There have been moments of frustration, moments of anger... all of the things you would expect. But in a situation such as this, you find the good. For me, I was unexplicably sick. Finding gluten was a <i>relief</i> because I didn't have to worry about taking drugs the rest of my life, or being constantly monitored for side effects...all that stuff no one wants to have to deal with. If I could control my health by removing a food, it wasn't so bad. So I chose my health, and it's much easier when it's a conscious decision.

Anyway, welcome to our club! We are always here to help, so please feel free to pick everyone's brains!

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

Celiac.com Sponsor (A8-M):


mommaofthree Newbie
mommaofthree
Posted

I was just recently dx, 6 days ago now. I went in to see a GI because I believed I had IbS, they scoped and took biopsies and found that I had Celiac. However, I had more symptoms that I was just dealing with thinking I was getting Old ( I'm 27) and having 3 children just messes with your body. I had the skin rash, lost my period for months, had FHS tests that showed me at advanced menopause levels, and of course I was constantly exhausted and iron deficient. I saw 2 doctors for these issues and not one of them put it all together, not even my GI who believed I had IbS. She none the less was shocked.

I guess I was lucky to get the biopsy done first and the blood test second. After reading so many posts about not showing in blood levels.

I am on a crash course to learning everything I can about how to eat and I really appreciate all the information at this site!!

Krista

Antioch, CA.

songstressc Apprentice
songstressc
Posted
  • Author

Thank you - all of you who have taken the time to share your history/stories. I am very thankful for this site and the people on it. I have never taken part replying or talking on sites and it is surprising how great it feels to talk to others in similar situations. Happy Holidays to all of you whatever beliefs you follow and wishing you a fantastic new 2009! :D

IMWalt Contributor
IMWalt
Posted

I can identify with this. I was just looking at my test result of "3" for Iga. My GI told me that was a negative. I had been gluten-free for over 2 months when I first went to the GI, and she told me to eat gluten for 3 weeks and then we did the test. I did not eat much gluten during that 3 weeks, because I was not told I should eat a lot, and I did not like the side-effects. However, I went for a follow-up just last week, and she now feels that I do have celiac based on my positive dietary response and the fact that every time I eat gluten, either accidently or on purpose, I end up with the same old symptoms; gas, cramps, noisy stomach, D or loose stools. I don't understans the tests, but I do understand my GI tract.

Walt

luciddream928 Explorer
luciddream928
Posted
I can identify with this. I was just looking at my test result of "3" for Iga. My GI told me that was a negative.

I've had a question about this for a while - why does that number have to be above 10 to be a positive? Shouldn't it be, "either you have it or you don't"?

Archived

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

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


  • Member Statistics

    • Total Members
      131,675
    • Most Online (within 30 mins)
      7,748
    Kimmber
    Newest Member
    Kimmber
    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

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. 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.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.