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

Just Had My Blood Test

JerryK

Recommended Posts

JerryK Community Regular
JerryK
Posted

I think they are running anti-endomysial, the stickers said EMA....

The lab technician seemed to have no idea what test this was.

(freaking rubber band they put on my arm hurt way worse than the needle)

Do you guys think Kaiser knows what they are doing?

I think this is the test that most closely correlates with celiac disease, but I'm not sure. I also think

that Kaiser, to their credit actually is running one of the more expensive tests on me...

Thoughts???

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

Celiac.com Sponsor (A8-M):


chrissy Collaborator
chrissy
Posted

Ttg is the best test, but you also need a total IgA serum done.

JerryK Community Regular
JerryK
Posted
  • Author

I'm pretty sure they are running EMA-IgA which is highly specific for celiac disease. They are probably running some other ones, but EMA was the only thing my rubbernecking could make out...

JerryK Community Regular
JerryK
Posted
  • Author

I base my opinion on documentation like this:

The aim of this work was to establish the diagnostic and follow up value of IgA-class antiendomysium (IgA-EmA) and IgA-class antigliadin (IgA-AGA) antibodies in celiac disease. Correlation with the intestinal histology at the different stages of the disease was evaluated, as well as its therapeutic monitoring ability. Fifty six children, twenty seven girls and twenty nine boys, aged six months to twelve years old, were studied. Thirty nine celiac children were all different diagnostic stages of the disease. Seventeen children with malabsorption symptoms and with normal intestinal histology were used as controls. Sixty blood samples were obtained simultaneously with the small intestinal biopsy. IgA-AGA (ELISA method) and IgA-EmA (immunofluorescent test performed over lower third Rhesus monkey esophagus) were determined in every blood sample. In 34 serum samples from patients with total or subtotal villous atrophy, two were negative for IgA-AGA and only one was negative for IgA-EmA. In 26 samples from patients with normal intestinal histology, two were positive for IgA-AGA and four were positive for IgA-EmA. The results for IgA-EmA had sensitivity 97%, specificity 84.6%, positive predictive value 89.2% and negative predictive value 95%. In the case of IgA-AGA were: sensitivity 94.1% specificity 92.3%, positive predictive value 94.1%, negative predictive value 92.3%. IgA-AGA and IgA-EmA showed a high correlation with intestinal histology and are in combination powerful tools for the diagnosis and follow up of celiac patients. Besides, they provide a useful aid in the indication of a jejunal biopsy and in close monitoring of the dietary treatment compliance

JerryK Community Regular
JerryK
Posted
  • Author

Also, I gotta admit...I'm really nervous about this now. If this comes out positive, there will be no

more denial.

I feel like I'm having a baby:)

happygirl Collaborator
happygirl
Posted

You want tTG and EMA, and then other pluses include Total Serum IgA, Antigliadin IgA and IgG

Nancym Enthusiast
Nancym
Posted
Also, I gotta admit...I'm really nervous about this now. If this comes out positive, there will be no

more denial.

I feel like I'm having a baby:)

You've been gluten-free though right? What're you going to do if you're negative?

Ha! From my understanding having a baby hurts more than a tourniqette on the arm!

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted
Ha! From my understanding having a baby hurts more than a tourniqette on the arm!

You are right about that! :P

Good luck, Jerry--and try not to be nervous. I mean, you already know exactly how gluten affects you and how you feel so much better off of it.

A set of numbers won't change that. ;)

JerryK Community Regular
JerryK
Posted
  • Author
You've been gluten-free though right? What're you going to do if you're negative?

Ha! From my understanding having a baby hurts more than a tourniqette on the arm!

Well, I haven't been gluten-free for about a month. Even if it's negative I'm going to go gluten-free, I feel better.

Lisa Mentor
Lisa
Posted
Well, I haven't been gluten-free for about a month. Even if it's negative I'm going to go gluten-free, I feel better.

APPLAUSE...coming from my house!

JerryK Community Regular
JerryK
Posted
  • Author

Difficult to guess whether I'm going to test positive or not....

If I were a betting man, I wouldn't touch this one...I honestly don't know.

rez Apprentice
rez
Posted

I totally agree w/ Chrissy, you should have had the tTG. The EMA is very specific to Celiac, but not very sensitive. Meaning, if you're positive, it's definitely Celiac, but if negative there's a good chance it could be false negative. The sensitivity of the EMA is no where close to that of the tTG. The two main tests you should have had run are the tTG and the total IgA. You need to know if you are IgA deficient. If you are, the tTG and EMA won't mean anything. I would call your doc and have him add the tTG and total IgA.

rez Apprentice
rez
Posted

Go to the Chicago Celiac Research website for good accurate info. It also talks about the Celiac screen. Good luck!

chocolatelover Contributor
chocolatelover
Posted

Jerry, you're such a good person to have on this board--I have learned a lot from you and the responses of others. Hopefully you will get the results before you leave for your cruise (lucky devil!). In any case, at least you are wise enough to know what makes you feel good!

Thanks for asking the questions about the blood test. I just got a copy of my "celiac panel" blood work, and all they did was IGA and TTG. I thought there was more to it than that? My numbers also don't seem to make any sense. Oh well...I'm still waiting for the biopsy results and I'm fairly certain that I'll be giving enterolab my business by this time next week.

Jerry, I wish you the best. I feel a bit of a kindrid spirit with you as I am going through much of the same as you--you just are able to write about it and I simply read most of the time.

cl

jerseyangel Proficient
jerseyangel
Posted

Here is the Celiac Panel--they should run all of the tests

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

chocolatelover Contributor
chocolatelover
Posted

Do you know what the numbers are supposed to be?

chrissy Collaborator
chrissy
Posted

the EMA test is left up the the interpretation of the one running the test which can make it less accurate. the Ttg test is done differently so there is no room for human error. this is why it is a better test.

rez Apprentice
rez
Posted

the labs levels vary. they all have different ranges.

rez Apprentice
rez
Posted
Jerry, you're such a good person to have on this board--I have learned a lot from you and the responses of others. Hopefully you will get the results before you leave for your cruise (lucky devil!). In any case, at least you are wise enough to know what makes you feel good!

Thanks for asking the questions about the blood test. I just got a copy of my "celiac panel" blood work, and all they did was IGA and TTG. I thought there was more to it than that? My numbers also don't seem to make any sense. Oh well...I'm still waiting for the biopsy results and I'm fairly certain that I'll be giving enterolab my business by this time next week.

Jerry, I wish you the best. I feel a bit of a kindrid spirit with you as I am going through much of the same as you--you just are able to write about it and I simply read most of the time.

cl

was your tTG positive?

chocolatelover Contributor
chocolatelover
Posted

No, but I had been off gluten for a while when they did the test. I'm one of those that has many symptoms but my bloodwork was negative. I have been diagnosed with lymphocytic colitis, which hasd been linked to celiac. It's also an autoimmune disease and they think that it's the same genes cause both disorders. Dr. Fine (Enterolab) feels that gluten sensitivity may be caused by the colitis, which results in negative blood tests because the blood tests are just not sensitive enough to pick it up if you are not a full-blown celiac. What I don't know is whether the gluten sensitivity would disappear once the colitis is treated. It's all very frustrating!

JerryK Community Regular
JerryK
Posted
  • Author
Here is the Celiac Panel--they should run all of the tests

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Thanks, they may be running others besides the EMA, that's the one I picked up on. Wish I knew how long it was going to take!!

JerryK Community Regular
JerryK
Posted
  • Author
Thanks, they may be running others besides the EMA, that's the one I picked up on. Wish I knew how long it was going to take!!

I will feel like an outcast if both my gene test and Celiac Panel come out negative :rolleyes:

chocolatelover Contributor
chocolatelover
Posted

Do you feel like this is consuming your life? I feel like every moment is spent thinking about the results, wishing they were faster, thinking about what can I eat that won't make me feel like sh$%, what DID I eat that made me feel like sh$%, trying to get answers to questions that no one knows, thinking about whether I should switch doctors, and on and on and on...

jerseyangel Proficient
jerseyangel
Posted
I will feel like an outcast if both my gene test and Celiac Panel come out negative :rolleyes:

Nah--you're already "one of the family" :D

No matter what the tests say, you're part of the gluten-free crowd. Kind of a dubious honor..... :P

JerryK Community Regular
JerryK
Posted
  • Author
Do you feel like this is consuming your life? I feel like every moment is spent thinking about the results, wishing they were faster, thinking about what can I eat that won't make me feel like sh$%, what DID I eat that made me feel like sh$%, trying to get answers to questions that no one knows, thinking about whether I should switch doctors, and on and on and on...

Absolutely I can relate to that feeling. Especially when I was forcing myself to eat stuff that I know is

going to give me the runs or make me feel horrible. At some point you have to just let it go and do the best that you can do. I've done what I can do, I've had Enterolab testing, I have gene testing and a Celiac panel queued up. I've done due diligence....I now need to let it go and get on with life.

The Celiac diet is a pain in the a$$ to be honest, only because it isn't convenient. It doesn

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
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    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.