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.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.