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

Trying To Understand What My Reaction Means ...


Beccels

Recommended Posts

Beccels Rookie

Hello!

So, I have DQ2 although have not tested positive to celiac testing. Original investigations were due to atypical neurological symptoms that had no logical cause.

My doctor has advised me to be gluten free. I have been gluten free in the past and oddly, my symptoms improved greatly!

And then I began to cheat :)

I have not ever had typical gastro type issues with gluten.

Due to infertility issues I have decided to go gluten free again. I have been gluten free for two weeks.

Last night I decided to cheat, a lot ... I had some 'party food' mini sausage roll and piece of fairy bread.

Four hours later I threw it up. The people who also are the same food stayed at my house and they were not sick.

I never throw up. I don't even know when I last threw up!

My question is; does this or does it not confirm a sensativity? I have been told it may not, as anyone who cuts out gluten could expect a reaction either way.

I'm just confused, that is an extreme reaction for me personally.

Thanks!

Bec


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Who knows? You said that you tested negative to the celiac blood panel. Do you have the test results? Many folks do not get a complete panel. I ask because it is much easier maintaining a gluten-free diet with a formal diagnosis. Then there is never a doubt or cheating -- 95% adherence to the diet is meaningless for those with actual celiac disease. You may have Non-celiac gluten intolerance and the same dietary adherence applies.

By the way, not everyone has GI symptoms. I just had anemia.

Beccels Rookie

Who knows? You said that you tested negative to the celiac blood panel. Do you have the test results? Many folks do not get a complete panel. I ask because it is much easier maintaining a gluten-free diet with a formal diagnosis. Then there is never a doubt or cheating -- 95% adherence to the diet is meaningless for those with actual celiac disease. You may have Non-celiac gluten intolerance and the same dietary adherence applies.

By the way, not everyone has GI symptoms. I just had anemia.

 

Thanks for your reply!

 

My blood test was:

 

Gliadin Iga Abs: Results 2 (range 0 - 20)

tTG IgA/IgG: Results 2 (range 0 - 20)

 

Then I am heterozygous for the DRB1*07-DQA1*02-DQB1*02 haplotype.

 

My signature (which said 95% gluten & dairy free) is very old. I just deleted it :)

 

Either way, I think I have learnt the lesson that my body prefers not to be glutened! It's just hard to figure out. If I went on a diet and eliminated .... oranges, would I throw it up if I ate one two weeks later? I know that's a over generalization and that gluten is a much different ... beast ... to an orange .. it's just confusing!

powerofpositivethinking Community Regular

cyclinglady is right with regards to the panel.  The only test I was positive on is the DGP IgG even though I am not IgA deficient.  Unfortunately, I know everywhere does not run that particular test, but for me without it, I would still be wondering what was going on...

 

A full panel is:

 

TTG IGA/IGG

DGP IGA/IGG

EMA

Total IGA serum level

 

Do you know which lab ran the gliadin IgA test?  The new DGP is the better test for celiac disease whereas the old AGA test isn't as reliable.  You need to find out if it was the DGP or AGA version.  Plus without a total IgA serum test run, there is no way to know if your two tests are even valid.  With the TTG IgA/IgG test, I've never seen the results combined like that.  Usually it would list TTG IgA and TTG IgG on a separate line.  Good luck!

 

 

Who knows? You said that you tested negative to the celiac blood panel. Do you have the test results? Many folks do not get a complete panel. I ask because it is much easier maintaining a gluten-free diet with a formal diagnosis. Then there is never a doubt or cheating -- 95% adherence to the diet is meaningless for those with actual celiac disease. You may have Non-celiac gluten intolerance and the same dietary adherence applies.

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,647
    • Most Online (within 30 mins)
      7,748

    Julie 911
    Newest Member
    Julie 911
    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 agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
×
×
  • 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.