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

Am I Really A Celiac?


Blessings

Recommended Posts

Blessings Explorer

I constantly want to test to see if I will react. I usually have a reaction when we go out to eat. When I have been glutened it usually lasts about 2 weeks. When I mention that I want to eat something that's not legal all of my family yell NO! They like me better than the evil twin that comes out with gluten. It just doesn't click in my brain. Whenever I feel good for a while I think maybe its not celiac. My family and I know it but I just can't grasp it.

I think one of my problems is that over the years I have had bloodwork 3 times and they were all negative. One test came back high IGA 393 ref range (69.3-309.0). My biopsy came back positive. I have the HLA-DQ8 gene. My GI calls it Latent Celiac. Pill camera was normal. He also calls my Crohns Latent Crohns. I have all the issues but their ?Latent?

Anyone else in unbelief and want to keep testing it?

God bless

Vicky


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Vicky...you had a POS biopsy....the gold standard for Celiac AND you have a Celiac gene. You are Celiac, whether you believe so or not. It isnt latent. And I assume some sort of symptoms got you to the GI doctor. You say you are improved. Do you want those symptoms to come back? Are a return of symptoms not enough to convince you? Will you be one of those people who starts eating gluten again and doesnt get convinced until you develop other auto-immune diseases like diabetes, MS, RA....or perhaps Celiac related lymphoma would convince you? It is a very hard to treat cancer in Celiacs.

Not sure what it would take to convince you......only you can decide that.

IMWalt Contributor
I constantly want to test to see if I will react.

Anyone else in unbelief and want to keep testing it?

God bless

Vicky

Yep. Just last night I drank a regular beer. A little bit later I had some gurgling and gas, and then this AM a little D. My wife yells at me (I didn't tell her about last night), but I keep hoping maybe it's coincidence that when I eat something with gluten in it I have D the next morning and gas all night. So now I am up to 6 times trying in the last 4 months, and gas 5 and D all six. It's frustrating to me mainly because of the severity of the reaction. Some times my insides will churn for a week after from a tiny little amount, and another time I eat more, and just have a little D. Sooner or later I will just give up trying to figure it all out.

Walt

JNBunnie1 Community Regular
Yep. Just last night I drank a regular beer. A little bit later I had some gurgling and gas, and then this AM a little D. My wife yells at me (I didn't tell her about last night), but I keep hoping maybe it's coincidence that when I eat something with gluten in it I have D the next morning and gas all night. So now I am up to 6 times trying in the last 4 months, and gas 5 and D all six. It's frustrating to me mainly because of the severity of the reaction. Some times my insides will churn for a week after from a tiny little amount, and another time I eat more, and just have a little D. Sooner or later I will just give up trying to figure it all out.

Walt

See, this is totally not a problem for me. My father died of leukemia at 53, and I get sick for a full month (miserably, can't work for part of the time sick) off even the tiniest bit of gluten. Those two things are plenty to keep me from even doubting, or being tempted to cheat.

oceangirl Collaborator

severe symptoms- me, too!

lisa

jamrock Rookie
Vicky...you had a POS biopsy....the gold standard for Celiac AND you have a Celiac gene. You are Celiac, whether you believe so or not. It isnt latent. And I assume some sort of symptoms got you to the GI doctor. You say you are improved. Do you want those symptoms to come back? Are a return of symptoms not enough to convince you? Will you be one of those people who starts eating gluten again and doesnt get convinced until you develop other auto-immune diseases like diabetes, MS, RA....or perhaps Celiac related lymphoma would convince you? It is a very hard to treat cancer in Celiacs.

Not sure what it would take to convince you......only you can decide that.

Believe you stay much healthier without that food, I felt that way in the initial months of avoiding gluten everynow and again I would cheat a little get sick and then I finally gave up and avoided gluten as best as I could, it is a life changer but like everything else in life one learns how to adjust

Blessings Explorer

I just had a couple of days of depression. They were enough to make me forget about cheating again. thanks for all the encouragement. I will be good! I will be good! I will be good! I WILL! I WILL! At least I will keep telling myself I will be good. :D

God bless,

Vikcy


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



Celiac.com Sponsor (A8-M):



pele Rookie

Yikes!! The only reason I can think that any celiac would purposely eat gluten is lack of understanding of what gluten does to your body. Please read Dr. Peter Green's book Celiac Disease: A Hidden Epidemic or watch this video from UCSD on youtube:

Open Original Shared Link

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748

    tdouglas2901
    Newest Member
    tdouglas2901
    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

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      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
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      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
      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.    
×
×
  • 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.