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

Worried About Over The Top Blood Test Numbers


chisket

Recommended Posts

chisket Newbie

Good Evening and thank you in advance for taking the time to educate me. I just got the bloodwork back for my 11 year old daughter who has been complaining of severe chronic stomach aches since March. We thought it was acid reflux, then lactose intolerance, and then finally I insisted on a blood test for gluten intolerence. The panel showed: Tissue TransglutaminaseIgA - 72.1 (reference range <=19.9); Gliadin Peptide AbIgA 29.6 (reference range <=19.9); Gliadin Peptide AbIgG 21.2 (reference range <=19.9)

The result summary stated: possibility of certain gluten sensitive enteropathie such as celiac disease or DH.

My pediatrician was able to get her in with a specialist for a biopsy next week. Given the high Tissue number (72.1), should I be overly concerned? And is it likely it's celiac disease? And do you know if anything else would cause this type of result?

Again, many thanks for enlightening me. I'm pretty worried.


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

It could be celiac, however if you think about it this way there are much worse things than it out there.

Not much will give that result. There are 3 (?) things i believe that do: Celiac, arthritis, and an issue with that type of cell.

Look at it this way, celiac is controled by diet and not some sort of strange medication :)

Keep positive!

Roda Rising Star

In all likely hood she is stong positive on the blood tests she has celiac. There are a few other autoimmune diseases (don't know which ones off hand) that can elevate the ttg. If she doesn't have any other issues gluten is likely the problem. I would go gluten free after the scope/biopsy and not wait for the results. Biopsy can give false negative results also.

Skylark Collaborator

Hi there. Don't worry. She's almost certainly celiac, because there is no other disease that causes that Gliadin Peptide antibody to appear along with TTG. Your daughter is very lucky that you were smart enough to insist on the gluten intolerance tests. Untreated celiac is no fun but kids usually recover really well off gluten.

I know it's scary that she probably has celiac but she will be fine. You should not be concerned about the TTG number. The amount of antibody does not correlate very well to damage on endoscopy. It can take her medium level of antibodies a bit longer to go away gluten-free but they will.

I know it's hard for kids, but you should probably put her on the diet no matter what the endoscopy says. The TTG is an autoimmune antibody and what you want to do is put her gluten free and get her retested in six months. If the TTG antibody falls, you know gluten was causing it and she's celiac no matter whether it was bad enough to show up on biopsy or not.

There are great moms around here who help you cook and find foods for your daughter so don't hesitate to ask for tips!

ravenwoodglass Mentor

Welcome to the board. With numbers like that she is most certainly in need of the diet. Some doctors would diagnose based on that but many do still want to do a scope. Do not take her gluten free until after the biopsy is done. As was said she can go gluten free as soon as that testing is done you don't need to wait on the results. Keep her on the diet even if the scope should come back negative.

Do be sure to get every other first degree relative tested also even if they don't seem to have symptoms.

chisket Newbie

I want to thank all of you who replied to my post. Just having people who know what they're talking about give me advice is so comforting. I will take your advice and go gluten free after the biopsy and also have all immediate family tested. I was tested a few years ago because they thought I had dermatitis herpetiformis...the blood test came back positive but the biopsy came back negative. Now I'm wondering...

Thanks again to you all.

Jungle Rookie

Don't freak out about the number. I was 193, my brother 196, and my niece 197 (TTG) It takes time for the levels to come down. After 6 months my brother's halved.

Regardless of the scope results I'd go gluten free. Don't worry after the first month or so it get easier. There is lots of help and information right here.


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.

  • 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. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    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. - 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.

    5. - 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.

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

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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?
×
×
  • 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.