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

Test Results Are In


hillyb6

Recommended Posts

hillyb6 Rookie

i am very disappointed i ws sure they would be pos, sigh they said they were neg

i was soo disappointed that i didnt even ask any thing else, i just called back to ask

for the actual test ran and tehir actual numbers so i am now waiting a call back for that info

so how many of your kids blood work came back normal and they were still found to be celiac


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



Celiac.com Sponsor (A8-M):



angel-jd1 Community Regular
i am very disappointed i ws sure they would be pos, sigh they said they were neg

i was soo disappointed that i didnt even ask any thing else, i just called back to ask

for the actual test ran and tehir actual numbers so i am now waiting a call back for that info

so how many of your kids blood work came back normal and they were still found to be celiac

Just curious how young your little one is (can't remember from your other posts)? Keep in mind that results in young children are often skewed. Don't rule out the posability that they DO have celiac or another food intollerance just because of the results. There are always false negatives, especially in young children.

-Jessica :rolleyes:

hillyb6 Rookie
Just curious how young your little one is (can't remember from your other posts)? Keep in mind that results in young children are often skewed. Don't rule out the posability that they DO have celiac or another food intollerance just because of the results. There are always false negatives, especially in young children.

-Jessica :rolleyes:

she is 8 not young so i dont know what to think she still has her gi appointment but still very disappointed

hillyb6 Rookie

ok if this makes any sense

she had gliadin antibodi panel

igg was 4

iga 3

endomysial antibodie screen

her iga was neg and retiuline iga antibobies was less than 1-5 antibodies not detected

does that at all m ake any sense

Kelgs Rookie

so how many of your kids blood work came back normal and they were still found to be celiac

shayesmom Rookie
ok if this makes any sense

she had gliadin antibodi panel

igg was 4

iga 3

endomysial antibodie screen

her iga was neg and retiuline iga antibobies was less than 1-5 antibodies not detected

does that at all m ake any sense

My mom gets tested and scoped about every 3 years (this has been going on for over a decade). Negative every time. However, she does notice a huge difference when she's on the diet. Since she has no formal diagnosis, she doesn't adhere to the diet 100% and so "picks and chooses" when she's going to poison herself and take her time out in the bathroom. :P It's quite interesting to watch how she juggles all of it as to me, it would just be easier to give the diet a real shot and go from there.

My dd's tests came back negative as well. But she had a great response to the diet and we do not mess around with trying to re-challenge her (that's what cross-contamination by accident is for....all with horrible GI distress, hyperactivity and tummy problems....now with headaches as well).

Now that the testing is over, you may want to give the diet a shot for a few weeks to see if the results make sense. Believe me, you will KNOW if gluten is a problem once you do the diet.

hillyb6 Rookie
My mom gets tested and scoped about every 3 years (this has been going on for over a decade). Negative every time. However, she does notice a huge difference when she's on the diet. Since she has no formal diagnosis, she doesn't adhere to the diet 100% and so "picks and chooses" when she's going to poison herself and take her time out in the bathroom. :P It's quite interesting to watch how she juggles all of it as to me, it would just be easier to give the diet a real shot and go from there.

My dd's tests came back negative as well. But she had a great response to the diet and we do not mess around with trying to re-challenge her (that's what cross-contamination by accident is for....all with horrible GI distress, hyperactivity and tummy problems....now with headaches as well).

Now that the testing is over, you may want to give the diet a shot for a few weeks to see if the results make sense. Believe me, you will KNOW if gluten is a problem once you do the diet.

yes i think that is exactly what were gonna do this week i plan to go and start replacing our glutened food wiht nonglutened foods dd has been gluten free for 3days not on purpose just been soo sick she hasnt eaten anything with gluten i cant say she feels better cause she has the flu, but she hasnt complained once that her stomach hurt i just plan on continueing this she has her gi appointment jan 31st so i guess we see what they say about the blood work and if they want to order more test

even if her blood work was pos not sure i would want the biospy i was reading where for most to be considered celiac pos a pos biospy, then gluten free 6mos then a neg biopsy then eat gluten for 3months then anouther pos biopsy was needed, umm i ams orry but if they know that gluten is causing the damage and they actually want you to eat stuff htat is posion to your body that seems contradictory to the oath

do no harm doesnt it


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



Celiac.com Sponsor (A8-M):



rez Apprentice

They don't do the 3 biopsy thing anymore. One abnormal is enough for diagnosis. I didn't see the tTG results on your test. That is actually the best screen for Celiac.

hillyb6 Rookie
They don't do the 3 biopsy thing anymore. One abnormal is enough for diagnosis. I didn't see the tTG results on your test. That is actually the best screen for Celiac.

ye from what i can gather they didnt do all the test i dont know why other than they dont know about the others or what i will ask the gi dr about it

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
      133,329
    • 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
      @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.