Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
julie5914
Posted

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
BlueTaelon
Posted
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
sunnybabi1986
Posted
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
julie5914
Posted
  • Author
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
sunnybabi1986
Posted
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,615
    • Most Online (within 30 mins)
      7,748
    Dianne burgess
    Newest Member
    Dianne burgess
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Struggling to get into a good pattern

      By cristiana · Posted

      I struggled for a long time.   My TTG levels took an age to come down.  I even gave pure gluten free oats a miss, it took 8 years before I could tolerate them.  Removing dairy temporarily from my diet was hugely helpful.  Check your utensils and the oven you use are scrupulously clean, and don't open roast or bake food uncovered in an oven shared with gluten eaters.  Shared grills must be thoroughly cleaned down, too. Our oven packed up a couple of years after I was diagnosed and after that time the top oven became my family's oven, I use the lower oven.  Also our dishwasher - the old one left a residue, and sharing with gluten eaters I think this was an important factor in my slow recovery.  When the dishwasher packed up I started hand washing the plates and making sure they were really rinsed well.  When we got a new one we bought a Miele does the initial rinse with clean water, not yesterday's old water.   I stopped eating out for a while - that's a biggie.  In recent years, in the UK, thanks to Zoe's Law, caterers are having to really tighten up on catering for people with coeliac disease and allergies so I am now finding eating out much less risky.  But I'd advise being very careful with restaurants where flour is thrown about and is airborne (such as pizzerias) or where harried chefs might cook pasta in glutenous water by mistake, as those are the places I've been glutened in the most.
    • kopiq
      almost a year in recovery - so many questions about to give up

      By kopiq · Posted

      also my hands are always cold, freezing cold in the winter and even cold during hot summer days. its like i have a shield. i feel warm but its not penetrating inside, my teeth chatter as well and my left index finger goes dead white when im super hungry. all dr tests come back fine. im so hopeless.
    • kopiq
      almost a year in recovery - so many questions about to give up

      By kopiq · Posted

      thank you, ive asked my dr to test for vitamin deficiency and shes only said vitamin d (very low 26) and b12, she says all other vitamins are not included in her blood tests only the major ones, C, D, E, B12 etc. Ive been following the aip diet now and im going to stay on it very strict to see how it goes. im eating tons of food, romaine salads, mango, peaches, pears, cucumber, celery, zuccnini, sweet potator, plantains, ground turkey and beef and chicken.  i eat about 4 plate filling meals a day with two to three good size snacks a day including about 3 or 4 bananas. im still not absorbing nutrients, if i eat any sort of food with fat, I.e ground beef or fatty pork the taste of fat lingers in my mouth for 2-3 hours sometimes longer, if i bask in sun for vitamin d i feel great but then lethargic and feel strange for a day or two later, like im still absorbing it all in. even regular sweet foods like fruit the sweetness stays in mouth for hours. ive had blood work done for gall bladder, thryroid, pancreas, liver, kindey dr says they are all fine. i dont know what other tests i can do?   ive attached two pictures of the rash that broke out on my legs, feet and small one near wrist bone bright red was before treatment, second scabby one is during treatment and healing.  https://freeimage.host/i/FrI3KZb https://freeimage.host/i/FrI3Fwu  
    • Scott Adams
      Trader Joe's strikes again

      By Scott Adams · Posted

      The Trader Joe's GF hamburger buns are the best!
    • StuartJ
      Trader Joe's strikes again

      By StuartJ · Posted

      Just ate some for lunch!  A really superb alternative to gluten-free bread and burger buns that all have the taste and consistency of compacted sawdust.  I bought two packs and now I'm down to one remaining muffin so need to get some more; the only thing is it's their own brand - they don't do mail or on line ordering and the nearest TJ's is in Charlottesville (a real nightmare to drive around) an hour away from me over the mountain.  😒
×
×
  • Create New...