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

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

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

JerryK Community Regular

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

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

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

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

Nancym Enthusiast
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
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
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
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

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

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

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

chocolatelover Contributor

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

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

Do you know what the numbers are supposed to be?

chrissy Collaborator

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

the labs levels vary. they all have different ranges.

rez Apprentice
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

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
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
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

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
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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • 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.