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

Pre Testing Advice

Dace

Recommended Posts

Dace Rookie
Dace
Posted

I am taking my 7 yr old in tomorrow to talk to the Dr about serum testing. I KNOW that she has a gluten intolerance based on her response to eating wheat. We have been dealing with these symptoms for a while and I finally got confirmation that her sister is gluten intolerant. I am actually worried that this little one has celiacs, based on her response to eating wheat.

Near constant belly aches of varying degrees based on what's been eaten, alternating diarrhea and constipation, leg fatigue, very slender, trouble eating because she does not feel good. When we get her off of all gluten for a few days, the symptoms drastically reduce. Back on wheat a couple times a day and the symptoms skyrocket.

So I read that the best tests will be :

Total serum IgA

IgA -Gliadin

IgG- Gliadin

IgA- (tTG)

But I have also read that kids don't produce a lot of IgA....or I misunderstood! Is there a better group of tests for children?

Our appt is tomorrow morning...I hope they draw her blood then because I have got to get her off gluten!

Any advice would be very much appreciated!

Dace

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

I am taking my 7 yr old in tomorrow to talk to the Dr about serum testing. I KNOW that she has a gluten intolerance based on her response to eating wheat. We have been dealing with these symptoms for a while and I finally got confirmation that her sister is gluten intolerant. I am actually worried that this little one has celiacs, based on her response to eating wheat.

Near constant belly aches of varying degrees based on what's been eaten, alternating diarrhea and constipation, leg fatigue, very slender, trouble eating because she does not feel good. When we get her off of all gluten for a few days, the symptoms drastically reduce. Back on wheat a couple times a day and the symptoms skyrocket.

So I read that the best tests will be :

Total serum IgA

IgA -Gliadin

IgG- Gliadin

IgA- (tTG)

But I have also read that kids don't produce a lot of IgA....or I misunderstood! Is there a better group of tests for children?

Our appt is tomorrow morning...I hope they draw her blood then because I have got to get her off gluten!

Any advice would be very much appreciated!

Dace

There are two additional tests that can be performed, the Endomysial Antibodies (EMA) and the Deaminated Gliadin Peptide (DGP). This last one has been used with fairly good success on children by Dr. Rodney Ford, here is New Zealand, who is a world recognized child celiac pediatrician. I heard him speak a couple of years ago and he thinks this is the best test for children. But that does not mean that if it is negative your child does not have celiac, because celiac testing in children is not especially reliable. It is better if they are over five, which is good for you. I would definitely ask the doctor to do the DGP. I hope the lab he uses can do this test, or have it sent out if they can't.

Good luck tomorrow.

Dace Rookie
Dace
Posted
  • Author

Had the blood drawn today...Dr. was great about my requests although said they could not to the DGP as it is still 'experimental'.

I should hear back middle of next week! Yay, things are finally underway!

carecare Enthusiast
carecare
Posted

Good luck Dace! I'm calling on Monday to request bloodwork on my 8 yr old. He told me this evening he had to lie down on the ground while outside playing because his stomach hurt so bad. I have to get to the bottom of this.

Hope you get some results that help you figure out what's going on in your family.

CC

Dace Rookie
Dace
Posted
  • Author

Good luck Dace! I'm calling on Monday to request bloodwork on my 8 yr old. He told me this evening he had to lie down on the ground while outside playing because his stomach hurt so bad. I have to get to the bottom of this.

Hope you get some results that help you figure out what's going on in your family.

CC

Aww, poor kid! I hope you get some answers too!

Hubby and I were talking last night about how much better he feels since going off bread and pasta (obvious gluten products) etc. I asked him some more detailed questions, like what about hidden gluten like in beer? He had a beer the last two nights and it did not seem to affect him. His response was that he has spent his whole life feeling sick, so he doesn't notice an 'upset' stomach anymore because it is just normal. That is just wrong and I don't want my little one to grow up thinking that being sick is normal!

  • 8 months later...
Marlie Apprentice
Marlie
Posted

Had the blood drawn today...Dr. was great about my requests although said they could not to the DGP as it is still 'experimental'.

I should hear back middle of next week! Yay, things are finally underway!

My child just had the DGP test and I haven't read anything about it being experimental. However I can say it was a positive on the DGP and negative on the tTG and EMA.

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. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,442
    • Most Online (within 30 mins)
      7,748
    Nony
    Newest Member
    Nony
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.