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

Ds Ttg Was Very High...ped Just Called With Results

wolfie

Recommended Posts

wolfie Enthusiast
wolfie
Posted

I finally convinced DS's (10 years old) Ped to test him after asking him for the past 5 months. He had wanted me to have the biopsy confirmed on myself before testing the kids. We were evalutaing DS for ADHD with the Ped and I asked again since it can be related to some of those symptoms AND DS complains about stomach aches all the time. His tTG came back at 222....it was supposed to be under 20. We are being referred to a Ped gi specialist who will decide whether or not to do an endoscopy/biopsy or just have him go gluten-free. I also asked the Ped about testing DD (3.5) now, too, since it is obvious that this is running in the family. He said to ask the gi specialist when we see him. We probably won't get in for 4-6 weeks, so at least DS can enjoy vacation next week.

So, my question is this.....how likely is it that he does NOT have Celiac with his tTG that high? Total serum IgA was normal. I ask b/c my testing was not complete....IgG was the only elevated number and I went gluten-free (with very positive dietary response) before seeing the gastro b/c I was told to by my PCP who didn't know better.

TIA......boy are things going to change around here.

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

Celiac.com Sponsor (A8-M):


penguin Community Regular
penguin
Posted

Considering your son's ttg was what, 11 times above normal and TtG is the most specific celiac indicator...I would say that yeah, he's got celiac.

Smunkeemom Enthusiast
Smunkeemom
Posted

I hear that there are no false pos. on blood tests, and that if it's pos. you got it.

Now, how possible is it that he has damage already? not sure on those odds, but if he doesn't go gluten free, he will eventually get damage.

wolfie Enthusiast
wolfie
Posted
  • Author

Thanks guys. That is pretty much what I thought, but DH is saying the test can't be right. I think he is in denial. He has a co-worker who is Celiac and was deathly ill when diagnosed, so he has a hard time believing that symptoms can differ person to person.

We find out next week when he sees the gi specialist.

Guest nini
Guest nini
Posted

his blood test was about as high as mine... yeah, he's got it... whether or not he has damage YET is irrelevant, if he continues to consume gluten he will eventually get damage. Regardless of what the specialist says, after you are done with any testing he wants to do (which in my opinion at this point is overkill) go ahead and put him on the diet... he has Celiac based on those numbers.

floridanative Community Regular
floridanative
Posted

the ttg indicates 99% specificity rate for Celiac. The only way he doesn't have it is if he has liver disease or diabetes instead.

Did he have a lot of viruses too or just stomach aches?

chrissy Collaborator
chrissy
Posted

with a Ttg that high he's probably got damage, even if an endo doesnt' catch it.

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

Celiac.com Sponsor (A8-M):


wolfie Enthusiast
wolfie
Posted
  • Author
Did he have a lot of viruses too or just stomach aches?

No, he is overall pretty healthy (except for this now). Just frequent stomach aches (no D, but some C), asthma, environmental allergies, anxiety and possible ADHD. He rarely gets sick (cold or stomach bugs). I begged his dr to test him after my going gluten-free and adding all his symptoms up.

Thanks for all of the responses. He doesn't appear to have blood sugar issues (although it has been a couple years since he was tested).

I do plan on the gluten-free diet as soon as we get done with the gi specialist. Heck, my numbers looked nothing like his and I have seen a HUGE improvement. Now to get DD tested....is 3.5 too young for the results to be conclusive?

Guest nini
Guest nini
Posted

my daughter was 3 when she was tested, and her results were negative, but her response to the diet was nothing short of miraculous. The tests aren't as reliable in children or adults as the medical community would like you to believe. Positive dietary response will tell YOU for sure if you have a gluten intolerance, but you will probably be hard pressed to get a Dr. to dx. Celiac based on that... my opinion (and strictly MY opinion) is that Positive Dietary Response is THE most valid diagnostic tool. It's quite simple, if you improve on the diet, viola! you have your answer!

wolfie Enthusiast
wolfie
Posted
  • Author
my daughter was 3 when she was tested, and her results were negative, but her response to the diet was nothing short of miraculous. The tests aren't as reliable in children or adults as the medical community would like you to believe. Positive dietary response will tell YOU for sure if you have a gluten intolerance, but you will probably be hard pressed to get a Dr. to dx. Celiac based on that... my opinion (and strictly MY opinion) is that Positive Dietary Response is THE most valid diagnostic tool. It's quite simple, if you improve on the diet, viola! you have your answer!

I agree with you completely on the positive dietary response, as that is how I figured out my issues after my positive blood test. It is night and day with my experience. There is no doubt in my mind now and I am certainly not doing a gluten challenge and making myself miserable to find out what I already know. DD on the other hand doesn't have any symptoms, so it would be hard to tell in her if her blood tests were negative or inconclusive.

I guess we can get her tested and then go from there. Thanks for your response Nini! :)

Guest nini
Guest nini
Posted

she may not have any obvious symptoms, but there may be some subtle behavior things that you have just chalked up to the age! (my daughters behavioral issues were NOT subtle by any means) I'm not saying that you are wrong that she doesn't have any symptoms, I just think you might be surprised by something you don't realize is or could be a symptom! LOL!

It is harder to get kids to comply with the diet if they don't have obvious symptoms, but if you wanted to still try it with her after testing, this age is a really good age to start. People are constantly impressed with how healthy my daughter's eating habits are, and how little junk food she actually likes.

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):

  • 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.