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

Question About Anti-Endomysial Antibodies (Ema), Iga Class


Mjay71

Recommended Posts

Mjay71 Newbie

Hello, everyone, I am a first-time poster to this board. Thanks for considering my question.

I'll provide background on my own gluten-consuming history and problems later if anyone thinks it is necessary, but for now, let me ask a question that should be generally applicable regardless of an individual's particular issues and history:

Is it necessary to be consuming gluten beforehand in order to have an accurate reading in a Anti-Endomysial Antibodies (EMA), IgA class blood test for celiac? I've read and heard anecdotally that consuming gluten for a spell before blood tests is necessary to achieve accurate results, but my doctor ordered this specific test and told me that it is NOT necessary to eat gluten beforehand because once antibodies form, they stay in the body for decades.

Thanks in advance for your help.


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Yes, gluten consumption is needed.

As for the antibodies staying, they vanish not long afterwords (thus the reason why people need to stay on it during testing). This is why its advised for celiacs to have regular blood tests after diagnosis. :)

kareng Grand Master

The blood tests measure if you are currently making antibodies. If you aren't eating gluten, you aren't making any. Read around on the Univ of Chicago website for explanations of the blood tests and print some out for your doctor. Or get another doctor..

Open Original Shared Link

"Which blood tests should I have to screen for celiac disease?

You should have both tTG-IgA and total serum IgA tests to screen for celiac disease. As long as you produce IgA (total serum IgA confirms you do), tTG-IgA is 98% accurate in measuring elevated antibodies. If IgA deficient, or if there is some other equivocating factor to potentially compromise the blood test, then an EMA blood test is also given.

Other gliadin antibody tests are not useful in screening for celiac disease."

Open Original Shared Link

I’ve heard that I don’t necessarily have to endure 12 weeks of eating gluten if I have a severe reaction. Is that true? How does it work?

The gut needs time to mount an antibody response that can be measured in the blood, which is why we recommend 12 weeks of eating gluten. If you experience symptoms immediately, it’s likely that the gut itself has quickly become damaged. In these cases, you and your medical professional could consider a shorter gluten challenge (3-4 days) and then have a biopsy.

Diagnosis is not an exact science, each person responds differently to the presence of gluten in the small intestine and the amount of time it has been there. Be sure to work with your medical professional to adjust your diet, if needed, during your gluten challenge.

Mjay71 Newbie

Your responses are most appreciated, thank you. I was afraid gluten consumption before the test was needed. Predictably, the test results were negative.

I have been relatively gluten-free for over a decade. I say relative because I allow myself to eat non-certified oats daily and drink some beers on the weekends. As others have reported, some beers I seem to handle fine and others not so well. I decided to include a celiac test in my annual physical because I am beginning to fear that if I am legitimately celiac rather than gluten-intolerant, I am doing long-term damage by consuming even the minimal amounts of gluten in non-certified oats and beer.

Unfortunately, it seems the test was a waste of money since I was told eating gluten beforehand was not necessary for an accurate reading. Drag.

Thanks again for your input.

tom Contributor

Open Original Shared Link

...

"...Other gliadin antibody tests are not useful in screening for celiac disease."

...

Wait, what??

So all the posts here specifying FULL Celiac Panel would all be wrong per UofChi?

No IgG, AGA, DGP??? :huh: what's going ON over there?

Did I read all that wrong? Maybe it explains still doing 12wk challenges? (I hope THAT'S wrong - that'd be ridiculous)

Quincypp Rookie

Your responses are most appreciated, thank you. I was afraid gluten consumption before the test was needed. Predictably, the test results were negative.

I have been relatively gluten-free for over a decade. I say relative because I allow myself to eat non-certified oats daily and drink some beers on the weekends. As others have reported, some beers I seem to handle fine and others not so well. I decided to include a celiac test in my annual physical because I am beginning to fear that if I am legitimately celiac rather than gluten-intolerant, I am doing long-term damage by consuming even the minimal amounts of gluten in non-certified oats and beer.

Unfortunately, it seems the test was a waste of money since I was told eating gluten beforehand was not necessary for an accurate reading. Drag.

Thanks again for your input.

I just got tested by my dr - waiting for results. While I havne't been on gluten free diet - i have had minimal digestion because I am doing Atkins - so no bread, wheat products consumed. May have digested some in other forms - she was aware of that but didn't say it would impact the results - not until i read hear did i realize hey i probably shoudl have consumed before. I spoke with my family dr and he said I may have to be retested if the results don't come out as they suspect - strongly believe celiac due to malabsorbion of vits.

I'll let you know how my tests come back and if she says I need to consume and then retest.

Mjay71 Newbie

Thanks, Quincypp. I'll look forward to hearing what she says.


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



Celiac.com Sponsor (A8-M):



guest134 Apprentice

Wait, what??

So all the posts here specifying FULL Celiac Panel would all be wrong per UofChi?

No IgG, AGA, DGP??? :huh: what's going ON over there?

Did I read all that wrong? Maybe it explains still doing 12wk challenges? (I hope THAT'S wrong - that'd be ridiculous)

I have noticed this not only on the University of Chicago's site but many other medical sites as well that this forum references. Sometimes I get the feeling that there are multiple different people with very different opinions filling out the FAQ at Chicago University's website.

They say that the gliadin antibodies are not useful for CELIAC disease but rather a gluten allergy. The thought for this would be based upon the fact that anti-Gliadin ab's have absolutely no predictive value for intestinal damage which is what celiac is, so to them the only true measurement of celiac is EMA and TTG which to me is also flawed because that only evaluates damage in the intestine that studies have shown can be caused by various reasons (well the TTG at least).

As for the deamidated I am pretty sure they weren't referencing it in that statement but many doctors are still sceptical on it since it is still new and there have been clinical studies that have shown a predictive value of celiac no better than the previous gliadin ab's.

GottaSki Mentor

What?

I've read many sources that list the gliadin test as tests for gluten intolerance - while many others site as the first celiac antibody to rise/fall in corelation with gluten ingestion, but never (that I recall) gluten allergy.

If incosistancies are found at any celiac center - I'd look to UofMaryland. I know that there have been incosistancies on UCSDs small website so Id imagine UoC could have some too - email them the page for clarification - would hate to have them reduce the amount of helpful info they publish.

Gemini Experienced

They say that the gliadin antibodies are not useful for CELIAC disease but rather a gluten allergy. The thought for this would be based upon the fact that anti-Gliadin ab's have absolutely no predictive value for intestinal damage which is what celiac is, so to them the only true measurement of celiac is EMA and TTG which to me is also flawed because that only evaluates damage in the intestine that studies have shown can be caused by various reasons (well the TTG at least).

The gliadin antibody tests are very useful, along with a full celiac panel. It will tell you whether you are reacting to gluten and is the standard test for dietary compliance, in those who are serio-positive. But it has to be coupled with all the other tests for a more complete picture. There is also the scenario where you could be reacting to gluten but show no intestinal damage on the tTg test. This still could mean you have Celiac....you may just not have acquired enough damage to show in blood work. Never heard of it being used for an allergy test...that would be IgE mediated, not IgA or IgG.

If you don't get the full Celiac panel, you haven't been tested for Celiac Disease.

guest134 Apprentice

Intolerance/allergy is what I meant. Yes it can go down in celiac as well as gluten intolerance when gluten is stopped but that does not correlate with celiac in of itself as it does not cause damage, it is simply a negative reaction to gluten that is not specific to celiac. For this reason some doctors are under the impression it is not helpful at all, where in a big picture it is very helpful. You have to remember, many doctors won't entertain the thought of NCGI or going after diagnosis for it.

guest134 Apprentice

The gliadin antibody tests are very useful, along with a full celiac panel. It will tell you whether you are reacting to gluten and is the standard test for dietary compliance, in those who are serio-positive. But it has to be coupled with all the other tests for a more complete picture. There is also the scenario where you could be reacting to gluten but show no intestinal damage on the tTg test. This still could mean you have Celiac....you may just not have acquired enough damage to show in blood work. Never heard of it being used for an allergy test...that would be IgE mediated, not IgA or IgG.

If you don't get the full Celiac panel, you haven't been tested for Celiac Disease.

Yes, I completely agree with that but unfortunately a lot of doctors don't. The correct view would be to say in of itself it does not have a high correlation with celiac (remember JUST celiac, nothing about NCGI etc..). It is very useful in a case where someone has an elevated TTG, with an elevated TTG and a negative reaction to gluten (positive AGA) it is very likely to be celiac.

Gemini Experienced

Yes, I completely agree with that but unfortunately a lot of doctors don't. The correct view would be to say in of itself it does not have a high correlation with celiac (remember JUST celiac, nothing about NCGI etc..). It is very useful in a case where someone has an elevated TTG, with an elevated TTG and a negative reaction to gluten (positive AGA) it is very likely to be celiac.

I still don't understand why testing gets so completely screwed up with doctors. Celiac has been in the mainstream for quite awhile now and yet, they still do not do the complete testing.

My sister, who has 2 AI conditions linked to Celiac, and a diagnosed sister (me), told me she doen't have it because her doctor tested her tTg and it was fine. :blink: This is what she wants to hear......

guest134 Apprentice

I think the unfortunate reality is many doctors are not willing to do much unless you come in with horrid symptoms, if they would listen to the patient and do appropriate tests to catch early autoimmune I think the diseases in themselves would be of little issue. If treated early there are few AI's that can really hurt you, aside from Lupus, MS and type 1 diabetes I would say most AI's are very easy to manage diseases and wouldn't wreak the havoc that they do if doctors would just stop being so dismissive of early stage symptoms.

It's like my doctors just because I am not reacting to gluten they say I can't have celiac, ok what about all the positive tests I have had? Maybe I caught it early? I don't want to be as sick as you guys before they take me seriously. If I have it I am very happy I caught it before it made me sick, no thanks to my doctors who I have had to fight to be given the endoscopy.

Gemini Experienced

I think the unfortunate reality is many doctors are not willing to do much unless you come in with horrid symptoms, if they would listen to the patient and do appropriate tests to catch early autoimmune I think the diseases in themselves would be of little issue. If treated early there are few AI's that can really hurt you, aside from Lupus, MS and type 1 diabetes I would say most AI's are very easy to manage diseases and wouldn't wreak the havoc that they do if doctors would just stop being so dismissive of early stage symptoms.

It's like my doctors just because I am not reacting to gluten they say I can't have celiac, ok what about all the positive tests I have had? Maybe I caught it early? I don't want to be as sick as you guys before they take me seriously. If I have it I am very happy I caught it before it made me sick, no thanks to my doctors who I have had to fight to be given the endoscopy.

It is very hard to diagnose other AI issues also because not everyone is serio-positive. Plus the overlap of symptoms can fool even the most savvy doctor. AI diseases can wreak a lot of havoc if they go undiagnosed long enough. I have 3 others besides Celiac and I know I would not have developed some of them if I hadn't gone 30 years without the Celiac diagnosis.

Hashi's thyroid disease and Sjogren's Syndrome can hurt you, long term. I have those 2 and they are more of a problem than the Celiac is, although they have gotten better, symptom-wise, since going gluten free.

I think a lot of it is money driven. It's not a money maker for the medical community like other diseases are. Sad but true. Plus, anything to do with food related issues and doctors are automatically baffled. They usually won't address food issues.

tom Contributor

...

If you don't get the full Celiac panel, you haven't been tested for Celiac Disease.

I agree completely. I don't get how it's possible the oft-quoted U of Chicago skips over half of what we call a full panel.

Open Original Shared Link

You should have both tTG-IgA and total serum IgA tests to screen for celiac disease....

... Other gliadin antibody tests are not useful in screening for celiac disease."

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. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    2. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,412
    • Most Online (within 30 mins)
      7,748

    Susan Marble
    Newest Member
    Susan Marble
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.