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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Daughter's Endoscopy This Morning
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13 posts in this topic

Took my 3 yr old for an endoscopy this morning. Everything looked normal, but will await biopsy. Her bloodwork results are confusing to me though... doc said she expects biopsy to show celiacs, as her bloodwork levels are "high."

I guess I don't know the difference between these tests (despite googling)... she has an IgA of 28 (normal range) but a Transglutaminase AB IgA of 115 (very high). Can anyone tell me the difference? Or if there's another part of the bloodwork panel that is more "indicative?"

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Took my 3 yr old for an endoscopy this morning. Everything looked normal, but will await biopsy. Her bloodwork results are confusing to me though... doc said she expects biopsy to show celiacs, as her bloodwork levels are "high."

I guess I don't know the difference between these tests (despite googling)... she has an IgA of 28 (normal range) but a Transglutaminase AB IgA of 115 (very high). Can anyone tell me the difference? Or if there's another part of the bloodwork panel that is more "indicative?"

The tTg (IgA) number is testing for intestinal damage and 115 is high. However, she is only 3 so damage could be very patchy. Sometimes it takes years for the small intestine to be damaged enough to find easily. Villi damage cannot be seen with the naked eye and needs microscopic analysis for diagnosis. Sometimes, if people go long enough, the small intestine may look scalloped or inflamed but I doubt you would see that in a 3 year old.

The IgA number that you were given of 28...is that total IgA or the AGA IgA test? I ask because the AGA IgA test is for response in the blood to the gluten protein while the total IgA is just a preliminary test to see if you make enough IgA to begin with for accurate testing results. Some people are naturally IgA deficient so cannot be tested by blood work.

I take it the doctor did not do a full Celiac panel? If they did, could you post other results here?

Just remember that a negative biopsy does not rule out Celiac, especially if one of the blood tests were triggered as abnormal. Three is very young for much damage to be done that a doctor could find so if they come back and tell you she doesn't have Celiac, that may not be true. Please let us know how the biopsy results pan out!

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Thank you so much for the reply -- that makes sense.

Here are the other results Transglutaminase Ab, IgA 115 <20 Units Negative : < 20 Units

Weak Positive : 20 - 30 Units

Moderate Pos to Strong Pos: >30 Units Gliadin Deamidated IgA Ab 5 <20 Units Negative : < 20 Units

Weak Positive : 20 - 30 Units

Moderate Pos to Strong Pos: >30 Units Gliadin Deamidated IgG Ab 69 <20 Units Negative : < 20 Units

Weak Positive : 20 - 30 Units

Moderate Pos to Strong Pos: >30 Units Endomysial Ab, IgA 1:80 DLT10 Reference Range:

Negative < 1:10 Dilution Interpretation (Celiac Screen) The presence of TTG IgA antibodies, coupled with additional findings in TTGNEG

a confirmatory assay, indicates an increased likelihood of celiac

disease.

Like I said -- it confuses me because I see normal as well as elevated numbers.

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Thank you so much for the reply -- that makes sense.

Here are the other results Transglutaminase Ab, IgA 115 <20 Units Negative : < 20 Units

Weak Positive : 20 - 30 Units Moderate Pos to Strong Pos: >30 Units Gliadin Deamidated IgA Ab 5 <20 Units Negative : < 20 Units

Weak Positive : 20 - 30 Units

Moderate Pos to Strong Pos: >30 Units Gliadin Deamidated IgG Ab 69 <20 Units Negative : < 20 Units

Weak Positive : 20 - 30 Units

Moderate Pos to Strong Pos: >30 Units Endomysial Ab, IgA 1:80 DLT10 Reference Range:

Negative < 1:10 Dilution Interpretation (Celiac Screen) The presence of TTG IgA antibodies, coupled with additional findings in TTGNEG

a confirmatory assay, indicates an increased likelihood of celiac

disease.

Like I said -- it confuses me because I see normal as well as elevated numbers.

It seems like those should appear this way:

Test Result Referance Range

Tissue transglutaminase IgA 115 (<20 Negative; 20-30 Weak Positive; >30 Moderate Pos. to Strong Pos)

Gliadin Deamidated IgA Ab 5 (<20 Negative; 20-30 Weak Positive; >30 Moderate Pos. to Strong Pos)

Gliadin Deamidated IgG Ab 69 (<20 Negative; 20-30 Weak Positive; >30 Moderatte Pos to Strong Pos)

Endomysial Ab IgA DLT 10 (1:10 Dilution Negative) Interpretation (Celiac Screen) TTGNEG

The presence of tTG antibodies coupled with additional findings in a confirmatory assay indicates an increased

likelihood of celiac disease.

So the only test that was not positive appears to be the DGP IgA (Gliadin Deamidated IgA) but the DGP IgG and the EMA (Endomysial Antibodies) were both positive in addition to the tTG IGA. I agree with your doctor that these are high numbers, and even if she does not find damage on the biopsy, I would expect her to go on to develop damage before long. I would consider her celiac, IMHO>

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Those test results were a bit hard to read but I agree with Mushroom. Your daughter has Celiac Disease. Those numbers are pretty high for a 3 year old. Those numbers will change for the better once she starts the gluten-free diet.

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Yep, sure enough, the biopsy was consistent with Celiacs... operation gluten free has begun. Thanks.

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Good luck with the transition. :)

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Yep, sure enough, the biopsy was consistent with Celiacs... operation gluten free has begun. Thanks.

You have a good sense of humor.....Operation Gluten Free! I like it!

Really....this is not hard to do, it just takes a little adjustment. We can help you find substitutes for your daughter's favorite foods and they can be just as yummy as their gluten filled counterparts. Be positive about the whole thing in front of your daughter and she will adjust well. Good luck!

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Thanks for the encouragement! She's great b/c she's has an egg allergy as well, so she's very used to doing without or with substitutions. I'm really hoping she outgrows the egg allergy as many of the good gluten free breads/doughs contain egg. Time will tell. As for today, we are having a bday party for my sister, so I am making a gluten-free pizza for her (I really hope it turns out!) and having an ice cream sundae bar instead of a cake.

I can't wait to see my girlie thrive on this diet. She's such a tiny thing now...

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Thanks for the encouragement! She's great b/c she's has an egg allergy as well, so she's very used to doing without or with substitutions. I'm really hoping she outgrows the egg allergy as many of the good gluten free breads/doughs contain egg. Time will tell. As for today, we are having a bday party for my sister, so I am making a gluten-free pizza for her (I really hope it turns out!) and having an ice cream sundae bar instead of a cake.

I can't wait to see my girlie thrive on this diet. She's such a tiny thing now...

Perhaps this will help with the egg problem.....http://www.kingarthurflour.com/tips/egg-replacer-tips.html

I seem to be having difficulty with links in my replies but you can just paste it to the address bar.

There are commercially made egg replacers in the grocery stores so maybe this will help make more things available to eat for your daughter. I think it fabulous that you have already made great substitutions like the sundae bar instead of cake. Kids like making their own sundae's anyway!

She'll probably grow well after being gluten-free for a bit....kids tend to catch up quickly. You'll be buying her new clothes in no time!

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I've been avoiding all egg product with her for the past two years. I have never tried the egg replacer, but I bought some ener-g to try. Egg has been amazingly easy to avoid.

I also ordered a bunch of books/cookbooks/gluten-free labels from amazon the other day, so I'm anxiously awaiting their arrival. The nice thing is that I try to eat pretty low carb anyway, so I'm not going to miss breads & pastas. I'm just trying to navigate all of this having a 6 yr old who likes her sandwiches, crackers, granola bars and the like.

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Whatever your daughter is missing and craving, let us know and we can steer you in the right direction on delicious replacements for her. As far as bread is concerned, my all time favorite bread is the Canyon Bakehouse brand. http://www.canyonbakehouse.com/ This bread is phenomenal and I have given it to the wheat eaters and they love it. There is a place on their website where you can find out who supplies it in your area.

Hang in there and don't sweat this as there are so many good things to eat that will satisfy even a 6 year old!

OK...so after posting this, I checked and that bread has eggs! Strike one! I know there are breads without eggs but you can always make your own.

My husband is making gluten-free bread now so I'll keep an eye out for recipes which are egg free. Who knows? Once your daughter is gluten-free for awhile and calms her system down, she may be able to re-introduce eggs in the future. You might want to check Udi's bread as that may be egg free and the flavor and texture is not bad at all.

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1/3 buckwheat, 1/3 bean flour, 1/3 potato starch - pancake/flatbread gluten-free flour mixture which needs no egg nor xanthan gum

Some amaranth flour added to any mixture makes bread which does not go moldy in the refrigerator. Amaranth is a good ingredient in eggless recipes.

The function of "egg" is to leaven (rise) the recipe, plus add some protein to make things bind together, plus add some fat, so all you have to do is add some sort of leavening agent in a carrier, a bit of gluten-free cider vinegar or lemon juice or acid in yogurt, and maybe use a high protein flour, and add a little fat. The commercial egg replacers tend to be just potato starch and baking powder based. But some gluten free flours are "stickier" than others. Buckwheat, which is actually a seed, is very good for this, especially when it is pre soaked in water for a few minutes.

gluten-free Flours or gelling agents mixed with water, which need less egg:

buckwheat, amaranth, tapioca, some bean flours, flax (gels when mixed with warm water), chia seed (gels when mixed with room temperature water). Also, you can take a fresh ear of corn, slice off the kernels, and run the corn thru the blender, processor, or magic bullet with a small amount of water, and it makes a nice, sticky sort of goo to which you can add the dry flours. Some Indian and Italian cooking uses chickpea flour, which also can be used to make eggless flatbreads. Teff flour also can be used to make flatbreads.

Pumpkin, mashed banana, and applesauce are also added to some eggless recipes.

The typical rice flour based bread mixes tend to need a lot of egg and xanthan gum to hold them together.

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  • Topics

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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