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

Looks Like I Have A Gluten Free Child

Roda

Recommended Posts

Roda Rising Star
Roda
Posted

I took my almost 6 year old back to the allergist today because his symptoms have not improved since he had his allergy testing. Just a recap I had my son restested for allergies Nov. 3rd. He has been tested twice before and current and past have all been negative. He has had continued rhinosinusitis since an infant. He had reflux, RAD and constant infections also. He had a honeymoon period but all his sinus symptoms came back raging. He also has been complaining of random stomach aches since June and occasional "puke burps". I have been suspecting food is causing his problems. I got his results of his recent blood work today.

IgA Total, Serum 147.85 (ref range 30-210 mg/dl)

Tissue Transglutiminase IgA Ab 16 (ref range Normal < or = 15 u/ml, Positive > 15 u/ml)

Gliadin IgG antibodies 6 (same ref range as tTg)

Gliadin IgA Antibodies 7 (same ref range as tTg)

Also it noted at bottom: No reference ranges established for pediatric population

He had the Tissue Transglutiminase IgA Ab in Nov. 2008 after I was diagnosed and his result was 1 with a ref. range anything > 19 positive. So a definate change. Is it comon to have a positive TtG and "negative" gliadin ab?

Everything else that he was tested for was all normal. I knew someting was up before I knew of the positive result because the NP kept asking me about any GI symptoms. He took a look at his throat, nose and swollen nodes in his neck and said that he feels that he is having reflux causing the sinus issues. Makes sense to me. We are going to put him on zantac (low dose) for 2-4 weeks and I am starting him on a gluten free diet tommorow for at least a three month trial. I'm not going to take him to a gi specialist at this point since we are not going to do the EGD and biopsy. I think with his symptoms, his positive test and my history of celiac it is enough to put him gluten free. I had the NP write a note for school for me and I plan to write a letter to his teacher tonight. I am going to pack his lunch and send his own snacks. I'll send a list and have a box in the room for him. I have to be extra careful and make sure his stuff is nut free since there are other kids in his class with nut allergies. My husband is thinking this is going to be difficult for us. I told him if we are positve about it and don't make a big deal out of it neither will he. I am also going Monday to have my oldest boy retested since he will probably be gluten free by default. My youngest son is very much into "things need to be fair" so it would cause a lot less problems. I think he will benefit anyway.

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

Good luck! I know that dairy is another MAJOR contributor to reflux, so if he's still on that, you may want to think about if you want to try taking him off of it.

Roda Rising Star
Roda
Posted
  • Author

Good luck! I know that dairy is another MAJOR contributor to reflux, so if he's still on that, you may want to think about if you want to try taking him off of it.

Thanks. His daddy was pretty upset by all of this. I think dad wasn't prepared for anyone else to have to be gluten free. It's different for him to eat his gluten stuff in front of me since I don't care, but he knows he will not be able to so much with him now. Also the boys have a boys day out every other weekend when I am working. They usually go for pizza or other things that I can't have. So I think he is a little sad too. I wrote his teacher a note, printed off some information and plan to talk to her in person. I know dairy can cause sinus issues as well. I am going to eliminate just the gluten for now and see if there are any changes. I'm not going to eliminate dairy just yet but may have to eventually.

Roda Rising Star
Roda
Posted
  • Author

Man I hate it when I sit and have to much time to think. I just hope I am making the right decision to go gluten free without the biopsy. I wanted it for myself, but it's weird I don't for him and neither does my husband.

Skylark Collaborator
Skylark
Posted

Any way you can get either of the better blood tests before you take him off gluten? Your doctor ordered the less accurate tests. The ones to ask for are deamidated gliadin peptide IgG and anti-endomysial IgA. If either of those is positive, you have a much better case for celiac without the biopsy.

Roda Rising Star
Roda
Posted
  • Author

Any way you can get either of the better blood tests before you take him off gluten? Your doctor ordered the less accurate tests. The ones to ask for are deamidated gliadin peptide IgG and anti-endomysial IgA. If either of those is positive, you have a much better case for celiac without the biopsy.

All the labs around here won't or don't do the EMA test. I don't know why or understand. I had an order for my oldest for the EMA along with the other tests and the lab wouldn't do it. I can inquire about the deaminated gliadin and EMA on Mon (and possibly get it drawn) however I started him gluten free today and Dad is being supportive. I wonder if 4 days gluten free would make a difference? I don't want him getting confused by flip flopping. Is the deamidated gliadin peptide just an IgG test or is there an IgA also? I have already talked to the school and explained the situation and they are having me fill out some papers and need one signed by the NP. I think the school will accomadate him. I really feel that this is his problem and I hate that I am second guessing my decision. I also already took him shopping for his gluten free box to keep at school.

Skylark Collaborator
Skylark
Posted

The deamidated gliadin peptide (DGP) is both IgA and IgG but most of the research I've seen uses the IgG version for everyone. Anti-endomysial is a specialized test that is done by hand, so not all labs offer it, but the DGP is amenable to normal ELISA equipment. Four days shouldn't make a difference, but after couple weeks he might start to lose antibodies. I don't really know the time frame and it's probably different for everyone.

Don't be hard on yourself for second-guessing. Putting a child on a restrictive diet is a big deal. It makes him different from his peers and it gets really hard on field trips, birthday parties, school events, and around holidays. I was wheat and dairy-free as a young child and Mom was supportive and wonderful but it was still really hard.

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

Celiac.com Sponsor (A8-M):


  • 1 year later...
Roda Rising Star
Roda
Posted
  • Author

One year update: My youngest son has had such major improvent over this last year. Symptoms he had starting 6 months prior to going gluen free: extreme moodiness, "puke burps"(reflux), stomach aches, out of the ordinary obcessive behavior over shoes, temper tamtrums and occasional steatorrhea. All of these symtoms have gone away and only resurface if he is glutened by accident. We did do a gluten challenge after he was appx. 4.5 months gluten free. We ended it after three days because he was reacting so bad. Anyway, he has grown leaps and bounds, he has grown about 4" and gained around 8-10 lbs since last November. I think that is significant! I had his blood work repeated and here are the results:

IgA, serum 120.46 (ref range 30-210 ml/dl)

Deaminated Gliadin IgG Antibodies 2 (ref range 0-19 units)

Deaminated Gliadin IgA Antibodies 3 (ref range 0-19 units)

Tissue Transglutaminase IgA Ab 2 (ref range 0-15 U/ml Normal < or = 15, positive > 15)

The lab didn't do the DGP last year but they must have finaly replace the older tests with them now. Doesn't really matter because the only test positive then was the tTG. We now have a NEGATIVE tTG!! The last year has been trying at times for him but seeing the negative test and all the other improvements, has made it completley worth it!!

Skylark Collaborator
Skylark
Posted

Thanks for sharing the good news!

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
      133,331
    • 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)

    • There are no registered users currently online

  • 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.