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

Diagnosing 19 Month Old


betsyabailey

Recommended Posts

betsyabailey Rookie

Hi there I'm new here! My son is 19 months now and has been gluten-free since 7 months. We noticed something was wrong @ 3 months and he had TMNT poo after I ate bread. So I went wheat free while I breast fed. Gave him barley cereal at 6 months and knew it was celiac not wheat allergy. My question is do I have to put him back on gluten for an actual diagnosis? He was such a chubby baby we didn't do lab work. He's getting Endomysial IgA and Gliadin IgA and G. Any help would be great thanks! Also a few questions about family history here. Do my husband or I have to have it? Do we have to carry a gene? Thanks.

Betsy


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



Celiac.com Sponsor (A8-M):



Aleshia Contributor
Hi there I'm new here! My son is 19 months now and has been gluten-free since 7 months. We noticed something was wrong @ 3 months and he had TMNT poo after I ate bread. So I went wheat free while I breast fed. Gave him barley cereal at 6 months and knew it was celiac not wheat allergy. My question is do I have to put him back on gluten for an actual diagnosis? He was such a chubby baby we didn't do lab work. He's getting Endomysial IgA and Gliadin IgA and G. Any help would be great thanks! Also a few questions about family history here. Do my husband or I have to have it? Do we have to carry a gene? Thanks.

Betsy

hi, I don't have all the answers but I do know that it is genetic so you or your husband would have passed it on. but that doesn't mean that you have the disease. it is a gene that can be triggered at any point in your life

Worriedtodeath Enthusiast

If he's been gluten free for several months, the test will come back negative. If he's been lite gluten or has been getting a little thru cc then it might show some antibodies but will probably still show neg. Your best bet is to continue on the path of gluten free. You will have to put him on a heavy gluten loaded diet for a minium of 3-6 months to even have a hope of getting a positive dx. If you want to do a challenge and get an official dx then wait until he's a little older and the gluten challenge won't mess him up as bad as it can a fast developing 19 month old. But it will take a long time on gluten to do enough damage to show up. We were on gluten for 96 days and didn't get a positive dx even though every dr we were seeing swore she was classic presenation for the disease and were confident enough to have us go on the diet as soon as the test was over. They just knew she would be positive but she came out negatvie.

Stacie

betsyabailey Rookie

Thanks, bummer. I want a diagnosis for his preschool, he'll start in January and they won't enforce special diets without doc's note. I guess we'll look for new preschool.

imsohungry Collaborator
Thanks, bummer. I want a diagnosis for his preschool, he'll start in January and they won't enforce special diets without doc's note. I guess we'll look for new preschool.

You're kidding me! :angry: So if a child has a peanut allergy...would they treat it the same? Probably not. All you have to do is say "nut allergy" and people go crazy trying to accommodate. Granted Celiac is not an "allergy," but the idea of a special diet being needed to maintain health is the same. Perhaps your doctor could write a note with a statement such as "probable celiac" or "possible celiac" while waiting for testing?

Actually, if he has responded so well to being gluten free, you may not want to put him through testing. At the very least, your pediatrician should be able to write "gluten intolerant: special diet necessary."

If you can, you may just want to find a new preschool.

Goodluck. hugs. -Julie :)

betsyabailey Rookie
You're kidding me! :angry: So if a child has a peanut allergy...would they treat it the same? Probably not. All you have to do is say "nut allergy" and people go crazy trying to accommodate. Granted Celiac is not an "allergy," but the idea of a special diet being needed to maintain health is the same. Perhaps your doctor could write a note with a statement such as "probable celiac" or "possible celiac" while waiting for testing?

Actually, if he has responded so well to being gluten free, you may not want to put him through testing. At the very least, your pediatrician should be able to write "gluten intolerant: special diet necessary."

If you can, you may just want to find a new preschool.

Goodluck. hugs. -Julie :)

That's a great idea! Thanks!

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 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • 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):
  • Who's Online (See full list)

  • 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.