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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Please Explain Ema Testing

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Can someone explain EMA testing to me? My daughter had elevated tTG back in April (tested b/c I have it), had a normal biopsy in May. Doc said stay on gluten, no damage, no celiac. Didn't like that advice, got a second opinion and he basically said the same but was way more willing to search for a diagnosis. Re-ran tTG (had been 3 mos since initial tTG), ran EMA, vitamin D and iron, CBC. She had been gluten free at home about 2-3 weeks prior to the tests though. Her tTG was 44 (<20 normal) so down from 78.20 likely because oflower gluten diet 2-3 weeks.

Her EMA was 1:40 with a normal range of < 1:10 dilution. GI said she is "mildly positive" on EMA- ? Don't ou either have endomysial antibodies or not???? And regardless of the value, having them is quite specific to celiac, yes? I don't understand the EMA values, can anyone clarify?

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To do an EMA, they put the test subjects blood on a slice of monkey intestine (going from memory here, may not be exact). they wash off the blood (probably serum) and then see how much endomysial antibody stuck. If they can dilute the serum (1:10, 1:40, etc) and still get a reading of some EMA, then the test subject had a lot of EMA to start with.

Does this make sense? Think about putting one drop of coke into 10 drops of water - is it still brown? What if you put it into 40 drops of water? That's the idea behind dilution antibody testing, how much can you dilute it and still find it? A lot = very positive, not at all = negative.

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Can someone explain EMA testing to me? My daughter had elevated tTG back in April (tested b/c I have it), had a normal biopsy in May. Doc said stay on gluten, no damage, no celiac. Didn't like that advice, got a second opinion and he basically said the same but was way more willing to search for a diagnosis. Re-ran tTG (had been 3 mos since initial tTG), ran EMA, vitamin D and iron, CBC. She had been gluten free at home about 2-3 weeks prior to the tests though. Her tTG was 44 (<20 normal) so down from 78.20 likely because oflower gluten diet 2-3 weeks.

Her EMA was 1:40 with a normal range of < 1:10 dilution. GI said she is "mildly positive" on EMA- ? Don't ou either have endomysial antibodies or not???? And regardless of the value, having them is quite specific to celiac, yes? I don't understand the EMA values, can anyone clarify?

anti-endomysial antibodies (EMA) are very specific to celiac. EMA in the presence of TtG screams "HELLOOOOO....TISSUE DAMAGE GOING ON...."

The doctors who dismissed you with instructions to continue on gluten are dolts.

Did you happen to get a copy of the biopsy report from the doctor? It would be interesting to know how many samples they took and what observations they made during the scope. It is awfully easy to miss damage, especially if it is in the early stages. Basically what the doctors have told you is to go home, let your daughter keep eating poison until she is seriously ill, THEN come back and let them treat her.

Not with my daughter, they wouldn't.

Your daughter's response (antibody reduction) to gluten-free eating says everything. She should NOT be eating gluten.

Sorry for being so pointed, I get so fed up with doctors! Especially the ones that seem to have gotten their degrees from Cracker Jack boxes.

Edited by beachbirdie

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Couldn't agree more. Dolts. Morons. Ignoramus....;) your doctors don't have a clue about celiac. She definitely has it. Either she doesn't have significant damage yet or they missed it. Find a doc to dx her- may mean a celiac specialist.

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My doctor diagnosed me as celiac with a very positive ttg IgA of over 200 (normal is 0-20) and a positive EMA of 1:40, and no endoscopy. I'm 38 and I strongly suspect I've been celiac since early childhood so I've had a longer time than your daughter to get my ttg levels way up there... That's just my theory.

And yes, EMA is very specific to celiac. I think I've read that it's over 95% specific to celiac... I'm afraid I can't quote where I've read that but I think it was Dr. Green's book on celiac disease.

Anyways,I think my doctor would have diagnosed her as celiac. Best wishes to your daughter.

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Thank you! I was just trying to understand her value of 1:40, how that was in relation to the 1:10 dillution they measured. Her biopsy slides were reviewed a second time by a different pathology, with this new GI- they found the same normal results. They are as follows:

A. Esophageal biopsy, no diagnostic abnormality- Three fragments for testing.

B. Gastric biopsy, no diagnostic abnormality- one stomach fragment for testing.

C. Small bowel biopsy, no diagnostic abnormality- six small bowel samples for testing.

Results: The small bowel biopsy has long delicate villi and shows a normal number of inflammatory cells in the lamina propria. There are no increased intraepithelial lymphocytes.

I thought the first GI we saw was just a fluke, which is why we sought out the second opinion- at Cleveland Clinic, where I am seen for my celiac, the pediatric GI we took her to this time, has a specialist in celiac in chidlren, and it is also a research hospital so I felt more confident and was quite surprised that he did not diagnosis her soley on her labs and family history. He does support the gluten free diet, he just can't "diagnosis" her as such, in his words.

My own celiac dr, a PhD who specializes in celiac, said NONSENSE!!!!! Take her off gluten ASAP! So, I felt better talking to her than the GI my daughter saw! My celiac dr doesn't see or treat children though.

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Thank you! I was just trying to understand her value of 1:40, how that was in relation to the 1:10 dillution they measured. Her biopsy slides were reviewed a second time by a different pathology, with this new GI- they found the same normal results. They are as follows:

Ohhh...I see you wanted to understand the dilution thing.

Basically, what they are doing is repeatedly diluting the sample (doubling the dilution, halving the concentration) to the point they can no longer see the antibodies.

So, the more times they dilute it, the more antibodies there are (the higher the concentration).

The higher the second number, the more antibodies there are.

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So she still had 4 times what the dilluted titer was? I was just curious because my EMA result didn't have a number value, just positive.

I was convinced when she came back Vitamin D deficient, because the girl 1) spends lot of time outdoors 2) gets adequate D in her vitamins and 3) eats very well, and also gets a vitamin D supplement year round except in the summer months when she spends so much time outdoors

So, to me, it is clear she is not absorbing the vitamin D- they only tested D and iron, in addition to a CBC, so if her pediatrician suggests it at her 8 year appt coming up in Oct, we will run a larger vitamin panel.

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So she still had 4 times what the dilluted titer was? I was just curious because my EMA result didn't have a number value, just positive.

I was convinced when she came back Vitamin D deficient, because the girl 1) spends lot of time outdoors 2) gets adequate D in her vitamins and 3) eats very well, and also gets a vitamin D supplement year round except in the summer months when she spends so much time outdoors

So, to me, it is clear she is not absorbing the vitamin D- they only tested D and iron, in addition to a CBC, so if her pediatrician suggests it at her 8 year appt coming up in Oct, we will run a larger vitamin panel.

LOL, at this level of detail I think you need Skylark! I understand the process vaguely, that's about it. Basically, as I understand it, the ratio refers to the number of dilutions, not the number of antibodies. So, the 1:40 is just saying there is one part patient serum in 39 parts of the diluting solution, making 40 parts in total. That is the last solution concentration at which they found antibodies. They usually start at 1 part serum to 9 parts diluting solution (giving the 1:10 ratio) and then do a series of dilutions until they don't see any more antibodies.

Does that help a little better?

These can be reported either as ratios, or as whole numbers, depending on the lab. Every lab is different, so if your daughter's test was done at a different lab than yours, the result will look different.

If it were me, I'd seriously have my daughter gluten free.

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Thanks for explaining :)

Starting school in a few days, just got her medical form updated and bag of safe snacks/treats ready for the classroom. Overwhelming but at least we are starting the school year off fresh.

I am really just still in the shock/denial process that she has celiac disease :( just so surprised as she has never had stomach symptoms, was an extremely happy baby/toddler and has never had any issues with foods. She has made it to 8 with barely a tummy ache!

No use in denial I suppose, you just hope so badly that your children won't be positive, I was only checking since I have it myself!

So begins our journey.

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celiac is genetic, and she got the genes from you.

Often nowadays doctors will rule in celiac when there is doubt, after a positive gene test.

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