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

Help, Just Got The News

mbg98

Recommended Posts

mbg98 Contributor
mbg98
Posted

Hello, I am still so upset, I just spoke with my kids doctor to find out there blood test results. Both had normal IgA tests but my oldest son had barley (like 2 points above normal) positive Ttg test (he is 6). So his pediatrician is going to consult with a pediatric Gi doc before he goes gluten-free, Never had any growth issues he has always been on off the charts as far as size, but he was diagnosed as an ADHD kid and put on Adderol daily which has since made his weight drop down, he has always had very large hard to pass bowel movements and alot of anxiety issues. But now my other Child (3) had a very high positive tTg test result (all the doc told me was it was in the hundreds) So at this point I am waiting to hear back from the pediatrician on what my next step should be. I don't want to have them go gluten-free only to hear the pediatric GI specialist wants them retested or endoscopies done and then I have to reintroduce Gluten.

I am just so worried about how they are going to handle this (gluten-free), Is there a good book on how to deal with Kids that have Celiac ( i was only diagnosed the end of Feb. and am still having trouble grasping the whole thing!) Do you have the kids go gluten-free cold turkey or do you slowly introduce gluten-free products?

Please any advice would be appreciated!

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

Celiac.com Sponsor (A8-M):


Guest elysealec
Guest elysealec
Posted
Hello, I am still so upset, I just spoke with my kids doctor to find out there blood test results. Both had normal IgA tests but my oldest son had barley (like 2 points above normal) positive Ttg test (he is 6). So his pediatrician is going to consult with a pediatric Gi doc before he goes gluten-free, Never had any growth issues he has always been on off the charts as far as size, but he was diagnosed as an ADHD kid and put on Adderol daily which has since made his weight drop down, he has always had very large hard to pass bowel movements and alot of anxiety issues. But now my other Child (3) had a very high positive tTg test result (all the doc told me was it was in the hundreds) So at this point I am waiting to hear back from the pediatrician on what my next step should be. I don't want to have them go gluten-free only to hear the pediatric GI specialist wants them retested or endoscopies done and then I have to reintroduce Gluten.

I am just so worried about how they are going to handle this (gluten-free), Is there a good book on how to deal with Kids that have Celiac ( i was only diagnosed the end of Feb. and am still having trouble grasping the whole thing!) Do you have the kids go gluten-free cold turkey or do you slowly introduce gluten-free products?

Please any advice would be appreciated!

I was diagnosed and I had my three kids tested. My one had been off the charts, but had anxiety issues and was being tested for learning disabilities. Her bloodwork was positive. I was told to wait and see because she did not have classic symptoms and there must be some mistake. I contacted a ped GI myself who specialized in celiac disease. He wanted to do the endoscopy immediately. The endoscopy showed significant damage. She went gluten free and anxiety and learning issues disappeared. We went totally gluten free and it took awhile to find good food. Now there are many items I can't keed my other kids away from. Pamela's Brownies, Ener G pretzels, to name a few. My daughter has not had a problem adjusting. She was spoken to at the GI's office by the doctor and a nutritionist and understands the significance of going off her diet and how she may harm herself. I am very grateful for that since she does not have GI issues. She was seven at the time. Good luck.

Guhlia Rising Star
Guhlia
Posted

I'm so sorry to hear about the kid(s). Don't worry, it WILL get easier. We've been gluten free for two years now and frankly, I don't even miss gluten anymore. I've found tasty substitutes for everything by now and honestly, my gluten free stuff is WAY better than the gluten stuff.

My daughter doesn't have celiac, or at least hasn't been diagnosed or tested yet. However, I've been preparing, just in case. I bought myself the Incredible Edible Gluten Free Food cookbook and Living Gluten-Free for Dummies. Both are valuable resources both for adults with celiac and for parents of children with celiac. The cookbook has AMAZING recipes that so closely resemble the real thing you and your children probably won't notice the difference. I didn't. It even includes recipes for things like pancakes, chicken nuggets, pizza, cake, pie, cookies - all the things you thought your kids could never have again.

I would highly recommend going gluten free immediately. If you slowly introduce gluten free foods while still feeding him/her gluten then you're still allowing his body to be damaged even further. It's very important that you start him gluten free right away. Kids are resilient and he probably won't even notice too much of a change, especially if you use a good gluten free cookbook to replace the bread staples in his diet.

Honestly, once he's gluten free for a while, he will feel so much better. It's SO worth it! I think you'll be surprised at how quickly the constipation and the ADHD subside or at least lessen.

Good luck!!!

mbg98 Contributor
mbg98
Posted
  • Author

Out of curiosity, does it happen alot that IgA tests are negative and tTg tests are positive? Thats the way mine were and my doctor says the tTg test is more accurate. Anyone else?

mmaccartney Explorer
mmaccartney
Posted
Out of curiosity, does it happen alot that IgA tests are negative and tTg tests are positive? Thats the way mine were and my doctor says the tTg test is more accurate. Anyone else?

You child shoud be checked for IgA deficiency. This could be the cause of the neg IgA and pos ttg. I will tell you that either way, with the positive ttg the ped GI will want to do an endoscopy and obtain biopsies.

Only my IgA blood test was pos, ttg was neg. Stool test (Enterolab) showed both positive.

As far as your kids, it is your call, but here is what I did. When I found out I had celiac we eliminated gluten from our household completely. At the same time we had the celiac panel bloodwork done. Only my 1st son had a pos IgG, nothing else. My children still had gluten when outside of the home, but not very frequently. As we began to notice some symptoms of reactions to gluten in them we have made them gluten free.

I just received my test kits for the children from Enterolab yesterday. I don't care what the Ped GI wants to do next, I refuse to submit my children to anethesia and endoscopy when I know non-invasive test procedures are available. Some docs take Enterolabs testing, some consider it hogwash. However it seems that those that are most knowledgable about Celiac accept their test results, and those that don't know much about celiac won't...

thats my 2 cents!

mbg98 Contributor
mbg98
Posted
  • Author
You child shoud be checked for IgA deficiency. This could be the cause of the neg IgA and pos ttg. I will tell you that either way, with the positive ttg the ped GI will want to do an endoscopy and obtain biopsies.

Only my IgA blood test was pos, ttg was neg. Stool test (Enterolab) showed both positive.

As far as your kids, it is your call, but here is what I did. When I found out I had celiac we eliminated gluten from our household completely. At the same time we had the celiac panel bloodwork done. Only my 1st son had a pos IgG, nothing else. My children still had gluten when outside of the home, but not very frequently. As we began to notice some symptoms of reactions to gluten in them we have made them gluten free.

I just received my test kits for the children from Enterolab yesterday. I don't care what the Ped GI wants to do next, I refuse to submit my children to anethesia and endoscopy when I know non-invasive test procedures are available. Some docs take Enterolabs testing, some consider it hogwash. However it seems that those that are most knowledgable about Celiac accept their test results, and those that don't know much about celiac won't...

thats my 2 cents!

What is an Iga deficiency mean? I thought it to be a little wierd that all 3 of our tests came back IgA negative but Ttg positive. I am hoping my kids do not have to go through the endoscopy, it was bad enough making them have there blood taken.

TCA Contributor
TCA
Posted

I just wanted to offer a foods list that I keep for my 3 year old. Just PM mw wit hyour e-mail address and I'll send it if you're interested. Good luck with the diagnosis!

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

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.