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 With Testing Information Asap (please)


dolly

Recommended Posts

dolly Apprentice

So, from my previous post many of you may know that I believe that I have Celiac and was looking around for a doctor to test me. Today I met with one of my best friends who is also a chiropractor. My insurance will allow her to order my Celiac blood tests so that I don't have to go to a regular doctor just yet. She wants to help me but I need to find out what the blood tests are called. I know that I have read it somewhere but can't find that information now. She needs me to email her that infor tonight.

Can anyone please point me in the right direction?

Thank you so very much!!!!


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Celiac Panel:

Antigliadin IgA

Antigliadin IgG

EMA

tTG IgA

tTG IgG

happygirl Collaborator

The basic panel includes:

Therefore, in the United States, screening in patients with possible celiac disease should consist of a panel of the following serologic tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

You can give your friend this link---they might be interested Open Original Shared Link

The tTG IgG is usually only run if you are "total IgA" deficient.

dolly Apprentice

Thank you so very much

You are a life saver!!!!!!!

Lisa Mentor

dolly,

Just a reminder...continue to eat gluten or your test will not be accurate.

dolly Apprentice
dolly,

Just a reminder...continue to eat gluten or your test will not be accurate.

Momma Goose, thanks for the reminder. I did eat some pasta at dinner tonight and within 3 hours started feeling intense bone pain again. Can't wait to get this test over with :angry:

Thanks !

ravenwoodglass Mentor
Momma Goose, thanks for the reminder. I did eat some pasta at dinner tonight and within 3 hours started feeling intense bone pain again. Can't wait to get this test over with :angry:

Thanks !

Dolly, Have you been doing the diet or gluten light? This can cause a false negative on the tests. You need to be actively consuming gluten, at least 3 or 4 slices of bread worth for at least 3 months to have even a slim chance at an accurate blood test, if there really is such a thing. The rate of false negatives even with folks still consuming a full gluten diet is at least 30%, even with those of us that are severely impacted. If you have been gluten free or gluten light the reaction from your consuming a pasta dinner would be a reaction to a gluten challenge, IMHO a more valid form of diagnosis.


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



Celiac.com Sponsor (A8-M):



dolly Apprentice
Dolly, Have you been doing the diet or gluten light? This can cause a false negative on the tests. You need to be actively consuming gluten, at least 3 or 4 slices of bread worth for at least 3 months to have even a slim chance at an accurate blood test, if there really is such a thing. The rate of false negatives even with folks still consuming a full gluten diet is at least 30%, even with those of us that are severely impacted. If you have been gluten free or gluten light the reaction from your consuming a pasta dinner would be a reaction to a gluten challenge, IMHO a more valid form of diagnosis.

So, from Sunday afternoon until Wednesday afternoon of this week I went gluten free and felt amazing. Then last night (knowing a test is coming) I went back to eating the way that I used to pasta, bread, etc. I feel awful and so depressed today that I can barely move, not to mention the bone pain came right back.

Now here is the question-if I don't get the blood test then what do I do with the doctors? At my next doctors visit do I tell my doctor "oh by the way, I am having a proglem with gluten. I think I have celiac disease, but I haven't take the test becuase I refuse to eat gluten again?" They will look at me like I am nuts. Maybe I am feeling emotional because of the darn gluten today but I just dont' know what I am suppose to do with this whole situation.

Sorry for the emotion. I just feel terrible today.

ravenwoodglass Mentor
So, from Sunday afternoon until Wednesday afternoon of this week I went gluten free and felt amazing. Then last night (knowing a test is coming) I went back to eating the way that I used to pasta, bread, etc. I feel awful and so depressed today that I can barely move, not to mention the bone pain came right back.

Now here is the question-if I don't get the blood test then what do I do with the doctors? At my next doctors visit do I tell my doctor "oh by the way, I am having a proglem with gluten. I think I have celiac disease, but I haven't take the test becuase I refuse to eat gluten again?" They will look at me like I am nuts. Maybe I am feeling emotional because of the darn gluten today but I just dont' know what I am suppose to do with this whole situation.

Sorry for the emotion. I just feel terrible today.

How about at your next scheduled appointment you tell him that you did a gluten challenge and it was positive, you may want to list the symptoms you are having in great detail and then you tell him that you have decided to do the gluten free diet as a result of this positive challenge and dietary response. Then you tell him that the diet has cleared up _______ ________and ______ you fill in the blanks and would he please do a check of your vitamin levels and make sure you get a bone scan if you haven't had one already. What made a real believer out of my doctors was time, and my recovery and remission from scads of gluten related autoimmune stuff. Oh and I never see them any more when I used to need appointments multiple times a month. Going from paying 17 grand in copays a year to less than 500 dollars made a believer out of my DH.

You will most likely have some emotional days as the toxic effects of the gluten leave your system. Many of us suffer a withdrawl and for some of us a glutening will bring on a massive depressive bout for anywhere from a day to a week or so. One of the most telling signs for me and my DS when glutened is the overwhelming nature of everything. It will pass but it may take time.

dolly Apprentice
How about at your next scheduled appointment you tell him that you did a gluten challenge and it was positive, you may want to list the symptoms you are having in great detail and then you tell him that you have decided to do the gluten free diet as a result of this positive challenge and dietary response. Then you tell him that the diet has cleared up _______ ________and ______ you fill in the blanks and would he please do a check of your vitamin levels and make sure you get a bone scan if you haven't had one already. What made a real believer out of my doctors was time, and my recovery and remission from scads of gluten related autoimmune stuff. Oh and I never see them any more when I used to need appointments multiple times a month. Going from paying 17 grand in copays a year to less than 500 dollars made a believer out of my DH.

You will most likely have some emotional days as the toxic effects of the gluten leave your system. Many of us suffer a withdrawl and for some of us a glutening will bring on a massive depressive bout for anywhere from a day to a week or so. One of the most telling signs for me and my DS when glutened is the overwhelming nature of everything. It will pass but it may take time.

ravenwoodglass,

Interestingly, I started a list the day I stopped eating gluten and continued every day there after. I have had enough experience with doctors to know to document everything but thank you for that advice!!!

Thank you for the heads up about the depression. I can understand that the body must go through massive changes during the detox process. Good to know!!!

BTW- I just posted another question. If you could read it and give some feedback I would greatly appreciate it. It is titled "Hope you don't mind one more question".

You have been just great!! Thank you so much for your help!!

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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. 0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,220
    • Most Online (within 30 mins)
      7,748

    kimchi1
    Newest Member
    kimchi1
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
×
×
  • 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.