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 Sufficient Enough To Be Negative?


Nikaia

Recommended Posts

Nikaia Newbie

Hello! I have Hashimoto's (weakly positive) and went to my endo on 12/4 for my yearly check up and asked her what she thought about going gluten free and if those with autoimmune diseases benefit from them. She said several people did as long as they went the natural food route and did not just substitue gluten filled processed food with gluten free processed food. I told her I was wanting to try it to see if I would feel better and she told me she wanted to test me for celiac before I did anything. My main concern is fatigue but that could easily be due my Hashimoto's or even my less than stellar diet. I never have diarrhea or constipation, my only symptom that may correlate with celiac or gluten inrolerance is I do get bloating after eating sometimes but havent paid much attention to if its afte I eat gluten or not. I have looked on this forum to see people's test results and what I should be asking when I get my results back. My doctor only calls when something of concern shows up and she ended up mailing my test results in the mail. The results I got look different from everyone elses in that it seems as if several antibodies were tested but I was only given one number as a result.

 

I will write down exactly what the lab showed in my letter.

 

_____________________________________________________________________________

Test Name: Celiac Screen

 Result: 5 U

 

Celiac Screen Interpretation:

Negative: <20

Weak Positive: 20-30

Positive: >30

 

Celiac Screen detects IgA and IgG antibodies to deamidated gliadin and tissue transglutaminase.

_____________________________________________________________________________

 

 

It almost looks as if IgA DMG, IgA tTg, IgG DMG, and IgG tTg were tested if I am not mistaken, but most people got results for each one specifically but I was just given a result of 5 U. Would this be because all were a result of 5? Her notes to me were that everything was completely normal and to go ahead with a gluten free diet to see how I felt and do the elimination diet to see if I could possibly be sensitive, in that case it would make me feel better.

 

Sorry for such a long post just not sure how to interpret it!

 

Jen 


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



Celiac.com Sponsor (A8-M):



SkyBlue4 Apprentice

I don't know what the "5" represents in your letter but I would request a copy of the actual lab results from the where ever you had them done. Then if you still have questions (we all usually do!), you can post the results here along with the reference ranges. 

 

Good luck with the gluten-free diet and hope you feel better  :)

Nikaia Newbie

Hi! What I posted was the copy of the lab results that's why I was confused because it looks so different than what I've seen!

SkyBlue4 Apprentice

Hi! What I posted was the copy of the lab results that's why I was confused because it looks so different than what I've seen!

Hmmm, sorry. I thought that was a letter you received summing up results. I've not seen a lab's celiac disease panel listed with just one result. There are several tests to run so I would think you would have several test results. Maybe someone else will be along who can interpret it?

0range Apprentice

If anything, at your next check-up, ask if your doctor can explain your results. I agree, these results can be very confusing to interpret. Best of luck! =) 

NoGlutenCooties Contributor

I would call the doctor and ask them to explain this to you.  It looks like they only ran one test.

For what it's worth, you don't have to have intestinal symptoms to have Celiac.  I didn't have any symptoms at all.  That said, if you do not have Celiac you may still benefit from the gluten-free diet.  The only way to know for sure is to try it.  But to really know, you have to go 100% gluten-free. 

frieze Community Regular

I have not seen a celiac "panel" referred to as a "screen" before.  maybe they only did the one test, it was negative, and it reflexed to no further testing?


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



Celiac.com Sponsor (A8-M):



Nikaia Newbie

Has anybody ever called the lab directly to ask about reports? I wonder if that would give me more information? I believe my testing was done by Quest Diagnostics.

cyclinglady Grand Master

Are you sure the results were directly from the lab?  Did the doctor just try to summarize your results?  Maybe she left out a page whens he was transcribing the letter?  I went to Quest Lab's website and they can provide you a copy of the lab results, but it can take up to 30 days and they can only do it for certain states.  It might be better/faster for you to contact your doctor.  

Nikaia Newbie

Thank you! I actually requested my lab results from Quest, they said 3-4 days for the reports. Hopefully that will show a more clear answer. I'm going to the store tonight and going to slow cook some bone broth I heard that's good for intestinal permeability if that's an issue, if not it won't hurt!

Suffering Newbie

I just had the exact same test done and I'm so confused too. Mine came back as a 7 which my doc said was negative but I can't find any info on this specific test. If you find anything else out post it and I'll do the same.

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
      133,331
    • 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
      @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.