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

Decoding Celiac Results

Angiekins

Recommended Posts

Angiekins Newbie
Angiekins
Posted

Hello All!

So I am semi new to this community, and I was just looking for help in trying to figure out my blood test results. I've had digestive symptoms for years, and always just thought it was a "part of life" and delt with it. After a stressful move across country, July of 2010, my symptoms worsened. It was to the point where I wanted to boycott food altogether lol

Anyway it was about a year ago that someone suggested my symptoms could be Celiac, and It took me almost a year to get around to getting tested. I went gluten free for a month or so to see how I felt, but I had already scheduled a doctors appointment at the GI office....i started eating everything bread related for a couple weeks prior to the testing, including buying a loaf of disgusting wheat bread..and eating most of the loaf...gag. I literally felt like i was dying...brain fog...fatiuge ( i cant spell...haha), severe bloating and pain, sometimes "D"...i missed work...blah blah blah...anywhoooo

Got testing done through TriCore...and this is what was all in the "celiac panel"

IgA: Sufficient

Gliadin IgA Ab: 8 (ref range 0-19 Units)

Tis. Transglut Ab IgA: 15 (ref range 0-19 Units)

it seems like its negative...and after all the research i have done, i thought there would be more included in the testing...it was really really dirt cheap so I dont know....I hope someone can help me on this...should I get retested? I cant afford to get scoped (which I hear is the Gold Standard)...Cause I have no health insurance. :(

Thank you for the help....sorry for the long rant haha

~Angie

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Welcome Angie!

The tests you listed are negative. The tests could be negative because the length of your challenge was too short. It takes time to accumulate antibodies in your blood in reaction to gluten consumption. Most celiac centers recommend between 6 and 12 weeks for the tests to be most accurate. If you choose to have more testing, continue to eat gluten, there is no need to overdo - a slice of gluten containing bread per day is sufficient.

Should you wish to ask for more blood tests:

Tissue Transglutaminase IgG

Endomisial IgA

Gliadin IgG

Deamidated Gliadin Peptide IgA and IgG

Additionally, testing for vitamin/mineral deficiencies are useful for determining if you are not absorbing nutrients properly. Vitamin/Mineral supplementation is often needed while healing.

Whether you want to pursue more testing is up to you. With negative testing you have two choices. Endoscopy or removing ALL sources of gluten to monitor for symptom improvement. Elimination of gluten is often the best test for Celiac Disease and is the only test available for Non-Celiac Gluten Intolerance. NCGI has many symptoms similar to Celiac Disease - they both have the same treatment - live gluten-free.

Good luck to you :)

nvsmom Community Regular
nvsmom
Posted

Lisa gave you great advice. :) As long as you don't need that piece of paper saying you are celiac (which from what I heard can make it harder to get health insurance) you should probably just go back to eating gluten-free. It sounds like you didn't do well reintroducing it back into your life anyways... and I hope you recover quickly from your gluten challenge.

I think I would call yourself a celiac (or NCGI depending on what a situation demands) and get back to the diet. If you did it for a month, you can do it again. :) Best wishes to you!

KikiB Explorer
KikiB
Posted

Lisa gave you great advice. :) As long as you don't need that piece of paper saying you are celiac (which from what I heard can make it harder to get health insurance)

Why would it make it harder? There's no medicine to be given out. Is it because if people don't comply with the diet they get sicker?

nvsmom Community Regular
nvsmom
Posted

Why would it make it harder? There's no medicine to be given out. Is it because if people don't comply with the diet they get sicker?

I'm Canadian, so I'm just repeating what I've seen said on the forum before....

I assume that part of it is that you could get sicker and have complications if you don't comply with the diet. Many health care professionals seem to think its a difficult and expensive diet to follow.

Also, Celiac is an autoimmune disease and AI diseases seem to run in clusters. It seems that a good number of middle aged celiac sufferers have a second, third or fourth AI disease as well. I imagine it would act like a red flag alerting them that we are at higher risk to more develop more illnesses.

Then again, I'm just restating what I've seen posted elsewhere without any proof to back it up... I probably should have "kept my mouth shut" and not typed without evidence. Sorry about that. :unsure:

KikiB Explorer
KikiB
Posted

I'm Canadian, so I'm just repeating what I've seen said on the forum before....

I assume that part of it is that you could get sicker and have complications if you don't comply with the diet. Many health care professionals seem to think its a difficult and expensive diet to follow.

Also, Celiac is an autoimmune disease and AI diseases seem to run in clusters. It seems that a good number of middle aged celiac sufferers have a second, third or fourth AI disease as well. I imagine it would act like a red flag alerting them that we are at higher risk to more develop more illnesses.

Then again, I'm just restating what I've seen posted elsewhere without any proof to back it up... I probably should have "kept my mouth shut" and not typed without evidence. Sorry about that. :unsure:

No worries. I was just curious. I already have asthma and cannot get insurance on my own. I can only get it through a job where they have to take you.

GottaSki Mentor
GottaSki
Posted

Why would it make it harder? There's no medicine to be given out. Is it because if people don't comply with the diet they get sicker?

Hey Nicole and Kiki-

I've seen these claims as well. I think it stems from the history of health insurance refusing people with pre-existing conditions. This was only a problem when applying for private insurance - not from your or your spouse's employer. The recent changes to health care laws in the US now prevent health insurance companies from refusing clients due to pre-existing conditions.

As far as I know there are no repercussions from obtaining a diagnosis.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

No worries. I was just curious. I already have asthma and cannot get insurance on my own. I can only get it through a job where they have to take you.

Wow...I thought this was no longer legal. Good to know.

KikiB Explorer
KikiB
Posted

Wow...I thought this was no longer legal. Good to know.

I don't know if that part of Obamacare has kicked in yet -- if it has, then it is illegal. It was true several years ago when I was in between jobs.

KikiB Explorer
KikiB
Posted

P.S. I would definitely prefer to know one way or the other. I already know I can't tolerate gluten, but I'd still like to know for sure.

  • 1 month later...
Angiekins Newbie
Angiekins
Posted
  • Author

Hey all, thank you for the advice! I've been eating like crap agian and thus feeling just as bad. I'm trying to get back into eating gluten free agian, but its so hard sometimes when I stop over at a friends and what not, and they are eating pizza or cookies....and i love pizza and cookies...and everything in between. :blink: I didnt know that about the health care....thats interesting...

Anywho, take care, Ill update occasionally

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
      133,334
    • Most Online (within 30 mins)
      7,748
    johnfreirefr
    Newest Member
    johnfreirefr
    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.