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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About vmlehtonen

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    1. vmlehtonen added a post in a topic Looking For Info   

      Celiac usually takes about a week. I have the number to our lab here and I call them and check in after three or four days and get the results myself. I also check the box on the form that says "copy to: patient" so that the lab will send me a copy of the results. Ask what the numbers are when you get the lab work back and check it versus other numbers on the net. OUr doctor told us that our daughters lab work was "fabulous" only to find out that one of her markers came back high. My daughter is IgA deficient, and if you are IgA deficient then you can get a false negative result....they are supposed to routinely order a total IgA to make sure that they don't get a false negative, but not all doctors do! Read about IgA deficeincy and results on this website, it's a good one:

      Read about the different tests and the numbers involved. My daughter came up with a high AGA IgG, this is not specific enough to celiac which is why they told me that nothing is wrong, but they should have ordered IgG versions of all the tests (EMA IgG, TtG IgG, AGA IgG) because she is IgA deficient. If you are IgA deficient then your IgA will not react to the gliadin serum, so it will come up as a false negative.

      I hope this helps. My best advice would be to research and know what the numbers mean so that you are well informed to talk with the doctor about the results when you get them!

      Good Luck,
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    2. vmlehtonen added a post in a topic Iga Serum Level Low   

      My daughter and I are also IgA deficient, that's what it sounds like you are. IgA is the most common globulin deficiency there is, it just means that you might be a little more prone to sickness than others, and more prone to other autoimmune diseases (from what the doctors say). They also thought she may have Lupus; those are autoimmune diseases. As is Celiac. I agree with the other post that you should get the IgG versions of the tests, they can do TtG IgG, EMA (Endomesial Antibody) IgG, and AGA IgG. This would give a better indication on whether you were reacting to gluten and maybe would give you enough of an answer to not have a biopsy. Some doctors don't like to order the IgG versions, although a Gastroenterologist would be better about what tests to order.

      Good luck. Keep searching, and educate yourself so you know what to look for. Here are a couple of good websites to look at that talk about being IgA deficient and testing for celiac.

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    3. vmlehtonen added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Anyone Else Iga Deficient?
      Daughter and myself having celiac symptoms, but we are BOTH IgA deficient. I am having trouble getting the doctors to order the right blood tests. My daughter had her AGA IgG come back high (22, normal is 0-10). But that is the only indicator that she may have celiac. There is conflicting journal articles to whether AGA IgG is a good measure for IgA deficient I want her pediatrician and my doctor to order TtG IgG, EMA IgG, AGA IgG. Is that too much to ask? Anyone else have to order these special blood tests due to IgA deficiency? Does her positive AGA mean that she is most likely celiac?

      • 1 reply
    4. vmlehtonen added a topic in Celiac Disease - Related Disorders & Research   

      Iga Deficiency And Conflicting Articles
      I have been trying to read up on IgA Deficiency and Celiac. My daughter had a blood test and is IgA Deficient and her AGA IgG came back high. Some articles say to perform a biopsy if this happens, and some articles say that this is not a good determinate of Celiac. I have been reviewing tons of journal articles and I just don't know what to believe. I have a call in to the gastro doc to see if they would like further blood testing like TtG IgG, EMA IgG also. Anyone else IgA deficient want to share their blood work?

      I decided to get myself tested as well and came back IgA deficient. The doc wouldn't initially order IgG's for all the celiac tests because she didn't think I would be IgA deficient, I was very frustrated, going back to ask her to order them now that we know I am too!

      Trying to decide whether I believe she may have celiac based on that AGA IgG????

      • 3 replies
    5. vmlehtonen added a post in a topic Is A Diagnosis Too Much To Ask For?   

      If I were you, I would be interested to see what blood tests the doctors ordered. I am having lots of different GI problems as well, and they ordered a celiac panel for me just to humor me and I MADE them do an IgA test as well, they didn't want to, and guess what? I came up IgA Deficient. If you are IgA deficient you can get a false negative on the serology tests. I would make sure they did an IgA test on you, and if not, I would request one, and if you are IgA deficient, then I would have them re-do the serology like this: AGA IgG, TtG IgG, EMA IgG.....these tests can be done using IgG instead of IgA if you are IgA defcient. My doctor wouldn't order them at the time I wanted her to, so now I have to go in and "talk" with her about it and "ask" to be redrawn! How frustrating. I'm curious to see what your numbers were. My daughter is also having this problem, except her doctor did order an AGA IgG with her panel, and she came up positive for that.....she was a 22 (0-10 being normal)......but one of the tests I mentioned above is not enough for a diagnosis, but if you get two or all of them positive, then that would tell a very interesting picture!

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    6. vmlehtonen added a post in a topic Celiac And Iga Deficient?   

      I am not sure which they used, I just know that the person on the phone told me that the normal started at 34 and went up to like 350 or something. Anyways, they also told me that <5 is the lowest possible score for IgA at this lab because they don't even take the time to measure it if you have less than 5, so it could be 1 or 2, but it seems that it is virtually undetectable if you have a value less than 5, so they just give you the value of <5. I don't have the papers in front of me yet, but I did ask the lab to send me the results when they are finished.

      The other thing that you might be referring to is the levels of IgA being measured in the celiac panel, like AGA or TtG. Those are measured differently than Total IgA. Those values are a range from 0-5 or something like that, so that number would be a value less than 5.......I don't have those results yet, but my celiac panel will be in the correct range because I am IgA deficient and won't show a reaction to the gluten.

      Does this make sense?

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    7. vmlehtonen added a post in a topic Celiac And Iga Deficient?   

      First test is back, I am IgA deficient like my daughter (<5 was my level, same as hers)! So I called the office and asked them to add AGA IgG, TtG IgG, we will see if they actually follow thru!

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    8. vmlehtonen added a post in a topic My Sons Labwork   

      That looks like a total IgA count (I think the Qn is Qunantitative), although he doesn't look deficient, it looks on the low side. I am going through a problem with my daughter, she has a few symptoms, not many, but she is IgA deficient (her IgA Quantitative was <5 and normal is 34-305) She is severely IgA deficient. And when the doctor ordered her tests, he only did IgG AGA, not IgG TtG. They told me that her results were NORMAL and they weren't sure why her IgG AGA came back high (hers was 22 and normal is 0-10 at our lab)! I told them I was worried about this number and the doctor agreed to send me to a gastroenterologist after I pressured him to find out the answers to my questions, so I am sure the gastro will order further testing. Have you ever looked at DS bowel movements? I have been speaking to a woman from a support group, and she suggested I watch those and report them to the doctor when I see the doctor next. I noticed she has some cloudy stuff floating in the water, it didn't look like grease, it was cloudy/whitish fluid; I wonder if it is mucus, it wasn't very thick......anyways, they say that if the BM floats, that is a sign. I hope this helps a bit......we are in the process of all this bloodwork, so we will see what happens!

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    9. vmlehtonen added a post in a topic Celiac And Iga Deficient?   

      I took the advice of others and went to the doctor and asked for the Celiac Screen. She didn't want to do the total IgA for me and I insisted further and she told me that insurance might not pay for it, and I said I didn't care, I needed it as my daughter has IgA deficiency; she didn't think I needed it! How unaware these doctors are about Celiac is mind boggling.....she only ordered the whole series to humor me! Because I am not skinny she doesn't think that Celiac is my problem (she thinks reflux and IBS are to blame, and weight). I'm just frustrated with this whole process, but I am not giving up until I get some answers, and more tests if need be. She wouldn't order the AGA IgG or the TtG IgG; but if the IgA comes back deficient, I will definitely request those tests!!! If she still won't order them, I will be finding a new doctor.

      I talked with a nurse from the celiac support group and she said something about the bowel movements floating.....I have been trying to keep a closer eye on what is going on in the bathroom with my daughter. What does "grease" look like in the toilet water? She has a cloudy clear/whitish film floating around after she has a BM. She has always had soft BM since she was a baby.

      Also, I was looking at her growth chart and you will find this interesting: she was in the 50th percentile at 4 months old for weight and head circumference, at 6.5 months old (a month after starting homemade cereals) she was in the 15th percentile!!!!! Such a drastic change in weight! Crazy! But this is all starting to make sense and come together like pieces of a very large puzzle! So believe me when I say that I will definitely pursue this for my daughters sake.

      Thanks for listening to me rant!
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    10. vmlehtonen added a post in a topic Celiac And Iga Deficient?   

      Did you have IgG levels (instead of IgA) tested at all with the AGA or TtG? My daughter also had ITP when she was younger so they kept asking us if Lupus runs in our family (my grandma was also tested for Lupus and was neg.); there may be a connection between all of these disorders with my daughter since they are all autoimmune. I think that going gluten free is going to be expensive, and hard for a child; so I just don't want to put her through that if I don't absolutely have to, that is my only's terribly difficult for adults to do, let alone children. I know she would be fine, I just want to have a few more blood tests ran just to see if we could have further confirmation. Maybe the gastro doc that we are going to see will order some gene testing, like you had. I am really reading up on this and will feel confident when I speak to them that I will know what I am talking about. I have been telling everyone that I am my child's only advocate and I am ready to get out there and figure this out! For the sake of her health!

      Thanks all for your posts,
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    11. vmlehtonen added a post in a topic Celiac And Iga Deficient?   

      happygirl--thank you for the website; that is one of the sites I found in my search that made me worry about her positive AGA IgG count; I have read conflicting information with what's in that article. Because the AGA IgG is not as sensitive/specific to celiac, some doctor's don't recognize it as a problem with celiac, but since Julia is IgA deficient I think they should. I think they should have ordered a TtG IgG instead of a TtG IgA. I am going to take the advice of others and request that my doctor order tests for me, I wonder if I am also IgA deficient, so you know I will be requesting tests that I have read about! I wonder what other peoples bloodwork looks like for an IgA deficient person.

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    12. vmlehtonen added a post in a topic Celiac And Iga Deficient?   

      I think I would feel confident putting her on a gluten free diet without having a biopsy if a Gastroenterologist told me to do so. With our pediatrician not even knowing that her IgG was not normal or why it wasn't normal or even being concerned that it wasn't normal, I don't feel confident with his initial "everything's ok" diagnosis.

      I have another question: how likely is it that me or my husband have celiac if we have a child with celiac? I have been having really horrible intestinal symptoms over the last three months and my doctor told me it was anxiety, then she told me it was reflux and IBS......I am ready to call her and ask her to give me a celiac test as well!


      PS Thanks for your reply
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    13. vmlehtonen added a topic in Celiac Disease - Related Disorders & Research   

      Celiac And Iga Deficient?
      I have a daughter who was diagnosed IgA deficient at 2.5 years old and she is now 5.5 years old; I asked the doctor to do a celiac test because I just found out that we have a family history of this and she has some of the symptoms. When her bloodwork came back they said that everything was FABULOUS (as the nurse put it); I had already called the lab itself and got the actual numbers and noticed that her IgG AGA (anti-gliadin antibody) was high and asked why this is? She didn't know, the doctor talked in circles about it and said that he would be happy to send me to a gastroenterologist to look further. So that is our next step. I have been reading up and I have found some websites that support Celiac Disease if you are IgA deficient and also have high IgG AGA.

      So my question is: Has anyone else experienced this problem in getting diagnosed?????

      Her bloodwork was mostly normal and here were the results of the abnormal stuff:

      IgA Quantitative <5 (normal is 23-137 according to this lab)
      AGA IgG was 22 (normal is 0-10 for this lab)

      Her TtG, and EMA was normal; and it would be normal because her body does not use IgA to react to allergens because she is IgA deficient.

      Is it worth taking her an hour and a half away to see a gastroenterologist? Do I have the right to be concerned about this? Anyone else get diagnosed with Celiac and IgA deficiency?

      Thanks for your input,
      • 19 replies

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