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

Had The Blood Test...continue Eating Gluten For More Possible Tests?

TammyTE

Recommended Posts

TammyTE Apprentice
TammyTE
Posted

My 2 year old was mostly grain free from 10mos till about 14mos then I would say 100% grain free till she was 22months old. At that point we added all grains back in the diet. (We were doing this diet for another dc and this is just how it worked out for her.)

So she was eating gluten daily since late August/early September. She had a blood draw late October and tested positive for gluten intolerance and possible celiac. Her Total IgA leve was 68 (Range 17-94) but they said because she is only 2yo she could still be celiac and it just wasn't adjusted for her young age.

I have her scheduled for a GI appt on January 11th. As of last week she has been gluten free. (Except for a christmas cookie she took off the dessert table at my mom's house. Grrrrr) But now I am wondering if I should keep her gluten free or if I should give her just a bit here and there in case they want to do more testing.

I am also getting my 8 year old son seen as well. He just got the blood test and I don't have the results yet. He was also eating gluten for the same period of time but had been gluten free for a week before his blood test last Friday. On Thursday night and Friday morning I had him eat some wheat for the test. I am hoping that was enough for the blood test.(?) Since he had only been gluten-free for a week I assume so, but please tell me if you think it would skew the results.

So what do you think? Keep them gluten-free or not?

Thanks so much!

~Tammy

Mom to five

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Not enough I believe. The general reccomended time peroid is anywhere from 3 weeks to..... a few months? Yeah. Moreso if you wish to do a biopsy.

squirmingitch Veteran
squirmingitch
Posted

One is supposed to continue eating a regular gluten diet all the way through testing & that includes the endoscopy.

TammyTE Apprentice
TammyTE
Posted
  • Author

Not enough I believe. The general reccomended time peroid is anywhere from 3 weeks to..... a few months? Yeah. Moreso if you wish to do a biopsy.

So you are saying my son didn't have enough gluten in his system for the blood test? (I am very frustrated because he was supposed to have gotten this test earlier but they failed to check the box requesting it...sigh.)

One is supposed to continue eating a regular gluten diet all the way through testing & that includes the endoscopy.

By "regular" gluten diet do you mean a piece of bread a day or??

Gemini Experienced
Gemini
Posted

So you are saying my son didn't have enough gluten in his system for the blood test? (I am very frustrated because he was supposed to have gotten this test earlier but they failed to check the box requesting it...sigh.)

By "regular" gluten diet do you mean a piece of bread a day or??

Tammy....my advice to people who want testing done is to "gluten up"! That means including gluten at every meal for best possible testing results. Feed your children as much gluten as they can stand.

Good luck!

TammyTE Apprentice
TammyTE
Posted
  • Author

Tammy....my advice to people who want testing done is to "gluten up"! That means including gluten at every meal for best possible testing results. Feed your children as much gluten as they can stand.

Good luck!

Really? Wow! My poor kids are going to be so confused. LOL

So do you guys think even if my son's blood test comes back negative I should do more testing for him with the GI doc since he shows signs of gluten intolerance/celiac? I scheduled the appt for both of them because they are the two I have had tested so far. My other three dc are scheduled in a couple weeks to get the blood test. They are still eating gluten, but not much because we were planning to stay away from it for the other two and that's just how it works out at meal times.

In hindsight I wish we had had them all tested at the same time to get it over with!

squirmingitch Veteran
squirmingitch
Posted

If the test comes back positive you will have your answer as there are virtually no false positives. If the test comes back negative you can not be sure it is truly negative.

We see this so often! People go gluten free before testing, people go gluten light before testing, people think that eating a cracker the morning of the test will be enough........

It's a real shame. Often the doc either doesn't know to tell people they need to be eating a full gluten diet or just fails to tell them.

You might want to consider having them all tested at the same time (& includes re-testing of son if needed) say in 3 months time when everybody has had time to get good & glutened up. It's a thought.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Is it gluten?

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    2. Seaperky
      - Seaperky replied to lizzie42's topic in Traveling with Celiac Disease
      2

      Trip to Anaheim/Disney

      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease. Thier gluten free options are awesome.
    3. Scott Adams
      0

      When Gluten-Free Food Is Unavailable: A Child's Struggle Highlights the Hidden Risks for People with Celiac Disease

    4. Churley
      - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    5. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,349
    • Most Online (within 30 mins)
      7,748
    Sarah S
    Newest Member
    Sarah S
    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

    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      Trip to Anaheim/Disney

      By Seaperky · Posted

      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
×
×
  • 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.