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. - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    2. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

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

      IBS-D vs Celiac

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

    • Total Members
      133,326
    • Most Online (within 30 mins)
      7,748

    Jaxon Reed
    Newest Member
    Jaxon Reed
    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

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.