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 With Questions On Getting A Diagnosis


joyinc

Recommended Posts

joyinc Newbie

Hi there!

this is my first post, and I thought that I would jump right in and introduce myself here. I was asking about celiac diagnosis on another website and someone was kind enough to direct me over here. I never thought that I would be celiac, because I thought that it was always terrible stomach pains after eating something with gluten in it. I support someone at work with celiac, so I have been reading more, and found out that it can have no stomach upset, but could cause brain fog, irritability, depression, lactose intolerance, nutritional deficiencies, and a whole mess of other things. I am basically all those things, and I already know that when i stop eating things with gluten in it, that I feel so much better.

However... its hard to stay away from them and i crave foods like that most of the time! So, I figure that if I had a diagnosis of celiac, that would be more serious because of the damage i could do over the long run.

So I went to my doc today and asked for some testing to be done. She wrote me up a script and told me that if i had an intolerance that it would show up 60% of the time, but if i was celiac, the test would show a 100% marker, or something to that effect. Yet from what I read about blood tests for celiac, they dont sound all that reliable. She wrote me a lab form that says: IgA tissue transgluteminase antibody (celiac), and she also checked off a box marked CBC.

Are these the tests that are faulty?

And another thing... I have been avoiding gluten and I hear that I need to be eating it for the test to pick up anything. Someone told me for about a month? Should I wait a month of going back to eating gluten to take the blood tests?

She told me that if something comes up with the blood tests that she would send me to a gastro-intestinal specialist for a biopsy.

I'm not really sure what else to do, and would really LOVE some advice.

Thanks so much!


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



Celiac.com Sponsor (A8-M):



Aleshia Contributor
So I went to my doc today and asked for some testing to be done. She wrote me up a script and told me that if i had an intolerance that it would show up 60% of the time, but if i was celiac, the test would show a 100% marker, or something to that effect. Yet from what I read about blood tests for celiac, they dont sound all that reliable. She wrote me a lab form that says: IgA tissue transgluteminase antibody (celiac), and she also checked off a box marked CBC.

she should have done the whole celiac panel... I think there are 3 tests in it (?) Open Original Shared Link

CBC is your complete blood count... to look for anemia etc.

someone else can answer your questions better than me though as I'm new to this too and haven't been diagnosed yet

joyinc Newbie

hmmm, now i dont know if i should go back and ask for the rest of the tests, or just go for the one. i am totally second guessing myself right now, cause i have eaten a bagel every day for the past week and i feel ok. i was thinking that i would do that for a month for the test, would that be good enough ?

nora-n Rookie

ome experts say one needs to be back on gluten for six months, some at least 3 months or six weeks, and it is impossible to say.

And one then needs to eat a lot of gluten, 0,3 grams per kg, that would be 21 grams if you weigh 70 kg.

https://www.celiac.com/articles/12/1/How-lo...gful/Page1.html

and it is utterly nonsense to say that it is 100%. It is only about 80% or less positive even in total villous atrophy, which means you have no villi left anywhere. After some weeks you have only patchy damage and some will have a positive ttg test.......it might take years, or forever.

And, one ould still need the total IgA test as well.

nora

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - chrisinpa commented on Scott Adams's article in Additional Concerns
      3

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

    2. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    4. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    5. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,490
    • Most Online (within 30 mins)
      7,748

    A.N.I.
    Newest Member
    A.N.I.
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Flash1970
      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.