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

Neg Genetic Test But Reacting?


julie5914

Recommended Posts

julie5914 Contributor

Hi all,

I need some advice. I was avoiding giving my 1 yr old son gluten and dairy at first because I am sensitive to both (have celiac + a dairy reaction of some kind). However, I read several studies that said that introducing gluten while still breastfeeding can actually make it better, so I ordered a genetic test, thinking that would give me a definitive answer and I could go ahead and give gluten if it was negative.

The genetic test did come back negative (it was from Enterolab) for the main genes associated with celiac, and we started to give gluten and dairy. He loved his Cheerios. However, he started pooping a lot more often, and it was quite watery with a special kind of stinky. It was hard to keep him free of diaper rash. My knee-jerk reaction was to take out gluten immediately, but now I am second guessing that decision because I've heard other moms saying their kids get diarrhea with teething. He does seem to be doing better gluten free, but I am honestly wondering how much of this is me assuming that it is gluten just because of my celiac. I also feel like what was the point of ordering the gene test if I am not going to trust the results?

How old is old enough to run the actual celiac panel. Should I wait until he's 2 to reintroduce gluten and get the actual panel done?

Thanks,

Julie


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



Celiac.com Sponsor (A8-M):



BlueTaelon Rookie
Hi all,

I need some advice. I was avoiding giving my 1 yr old son gluten and dairy at first because I am sensitive to both (have celiac + a dairy reaction of some kind). However, I read several studies that said that introducing gluten while still breastfeeding can actually make it better, so I ordered a genetic test, thinking that would give me a definitive answer and I could go ahead and give gluten if it was negative.

The genetic test did come back negative (it was from Enterolab) for the main genes associated with celiac, and we started to give gluten and dairy. He loved his Cheerios. However, he started pooping a lot more often, and it was quite watery with a special kind of stinky. It was hard to keep him free of diaper rash. My knee-jerk reaction was to take out gluten immediately, but now I am second guessing that decision because I've heard other moms saying their kids get diarrhea with teething. He does seem to be doing better gluten free, but I am honestly wondering how much of this is me assuming that it is gluten just because of my celiac. I also feel like what was the point of ordering the gene test if I am not going to trust the results?

How old is old enough to run the actual celiac panel. Should I wait until he's 2 to reintroduce gluten and get the actual panel done?

Thanks,

Julie

He could have regular gluten intolerance in which case the labs will not make a difference. Different causes but the treatment is the same.

sunnybabi1986 Contributor
However, I read several studies that said that introducing gluten while still breastfeeding can actually make it better, so I ordered a genetic test, thinking that would give me a definitive answer and I could go ahead and give gluten if it was negative.

Huh? Introducing gluten can make what better? I'm confused...where did you read this? I'm curious because I just read yesterday that if a baby has a celiac gene and you withhold gluten for the first 6 months, you decrease the chances of the baby developing celiac by five times. There is just too much confusing information out there! I never know what to believe! Agh!

I'd love to know for sure because we'd like to have another baby in the next few years and I'm not sure how to go about this whole gluten thing with a new baby.

julie5914 Contributor
Huh? Introducing gluten can make what better? I'm confused...where did you read this? I'm curious because I just read yesterday that if a baby has a celiac gene and you withhold gluten for the first 6 months, you decrease the chances of the baby developing celiac by five times. There is just too much confusing information out there! I never know what to believe! Agh!

I'd love to know for sure because we'd like to have another baby in the next few years and I'm not sure how to go about this whole gluten thing with a new baby.

Right, you should definitely withhold it for the first 6 months. The study I read said to introduce it at 6 months while still breastfeeding - that this is better than withholding it longer. Important to note that this is in the case of preventing sensitivity and allergy. If baby has the celiac gene, it doesn't matter; there is no preventing that.

sunnybabi1986 Contributor
Right, you should definitely withhold it for the first 6 months. The study I read said to introduce it at 6 months while still breastfeeding - that this is better than withholding it longer. Important to note that this is in the case of preventing sensitivity and allergy. If baby has the celiac gene, it doesn't matter; there is no preventing that.

Ah! Thanks for clarifying! So this only applies to allergies and sensitivities, not celiac itself...that makes sense.

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. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

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

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748

    Abbyyoung417
    Newest Member
    Abbyyoung417
    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

    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
×
×
  • 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.