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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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Pediatrician suspected Celiac so she ordered a panel:

Anti-gliadin IgA - .21

Range - 0-.9

Anti-gliadin IgG - 3.26

Range – 0 - .9

The nurse from the pediatrician’s office called and said she tested positive and set us up with a pediatric GI.

Saw a pediatric GI and these are the test results that posted online tonight. What does this mean?

GAMMAGLOBULIN (IGA)

IgA 58 22-157 mg/dL

TISS TRANSGLUTAMINASE IGG/IGA

Transglutaminase IgG 5.0

Range- 0-19.9 U

Negative

Transglutaminase IgA 4.3

Range - 0-19.9 U

Negative

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Hi mizunosport, and welcome.

The second two results from your GI's tests were negative. The first two were positive. But your child has still not had the full celiac panel, which consists of the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA (and IgG)

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Your daughter has had those that I have bolded.

Doctors are in love with the tTG test and it is often the only one they order; yours did at least order both the IgA and IgG versions, along with the ttotal serum IgA which was within normal range, meaning that IgA testing is valid for your daughter.

You don't say how old your daughter is, but if she is a toddler or baby the DGP, IMHO, is the most likely to give an accurate result. It is a newish test and a lot of doctors are not that familiar/comfortable with it and therefore don't use it. However, Dr. Rodney Ford, who is one of the foremost pediatric gastroenterologists in the world of celiac, feels that any child who tests positive on this test will eventually go on to test positive on the other tests. And it is not necessary to test positive on all tests. If they are not going to do any more blood testing, or an endoscopy with biopsy, I would suggest you either take your child to a celiac specialist or a recognized celiac center, or trial her on a gluten free diet to see if whatever symptoms she is experiencing improve or go away.

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Hi mizunosport, and welcome.

The second two results from your GI's tests were negative. The first two were positive. But your child has still not had the full celiac panel, which consists of the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA (and IgG)

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Your daughter has had those that I have bolded.

Doctors are in love with the tTG test and it is often the only one they order; yours did at least order both the IgA and IgG versions, along with the ttotal serum IgA which was within normal range, meaning that IgA testing is valid for your daughter.

You don't say how old your daughter is, but if she is a toddler or baby the DGP, IMHO, is the most likely to give an accurate result. It is a newish test and a lot of doctors are not that familiar/comfortable with it and therefore don't use it. However, Dr. Rodney Ford, who is one of the foremost pediatric gastroenterologists in the world of celiac, feels that any child who tests positive on this test will eventually go on to test positive on the other tests. And it is not necessary to test positive on all tests. If they are not going to do any more blood testing, or an endoscopy with biopsy, I would suggest you either take your child to a celiac specialist or a recognized celiac center, or trial her on a gluten free diet to see if whatever symptoms she is experiencing improve or go away.

Holy moly. I am now overwhelmed. Let me give you the whole story... Our daughter is 3 (will be 4 in May). We have battled with digestive issues for as long as I can remember. She had a food allergy panel before she turend 1 that was negative. I thought maybe it was a lactose thing, but even removing that it never really helped. A couple months ago I was frustrated with loose stool issue and took her back to the pediatrician. They did another food allergy panel and some fecal testing. Everything came back normal. Since I'm working full time I didn't realize how bad the situation was. When winter break started (I'm a teacher so I was home) I realized she's pooping 5-8 times a day. And it runs the gammot in consistancy. So, back to the doctor we went. That lead us to her first panel. We got the results on a Thursday night and the nurse told us to go ahead and start a gluten free diet since we were seeing the GI on Monday morning.

Friday we start gluten free, except for when lunch she was at daycare.

Saturday she poops twice.

Sunday she poops twice. NORMAL poops. No upset tummies. Eats like a horse for the first time ever.

The GI appointment was a nightmare.

She says that the doctor did an old test. It said her IGG is high, but IGA is normal. She says the next step is a biopsy and I ask about doing the genetic test instead. She says that is expensive. My husband says, well how expensive? If money is no object and it's less invasive we want to do that. This got her panties in a bunch. She said, she's been doing biopsies for decades and while there is risk of perforation and bleeding it's never happened.

She changes the subject and asks about our daughter's symptoms. She is very quick to say that us going gluten free in this short of time would have no effect. And that it's highly unlikely she has Celiac. So, she has us do an x-ray of her stomach. Uhm, five minutes ago she was gung-ho to do a biopsy?

Comes back in and pulls up the x-ray image in five seconds she says she's constipated. I said, okay? She's going 5-8 times a day. I ask if she's constipated then what is causing it? She says that even one episode at young age can cause her to hold it and then not be able to control it? I said, so she's been constipated since she was 1? She says yes. I'm irritated because this sounds like a load of crap.

She says she wants to do a CBC and thyroid test so I said how about doing the "new" Celiac panel? So then she says fine and adds in a food allergy panel. Uhm, didn't I JUST say she had one a few months ago? Two in her life already? Whatever, one stick do whatever you want.

Then she says we have to give her an enema today and tomorrow and then one next week and she needs to be on Miralax. And that the nurse will be in to explain it. My daughter does not have a constipation issue. The last four days she has been in perfect health. The last four days have been gluten free. I am NOT giving her a enema.

I’m just extremely frustrated.

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I sure hope you are on to something! Sorry, it is being so hard to determine with all of the frustrations. I would encourage you to just keep doing your best for your daughter. I fully believe there is a root cause to every ailment. Find it, fix it, and the symptoms will go away.

Diana

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It is true that the tests the original doctor ran, the Anti-Gliadin (AGA) IgA and Anti-Gliadin (AGA) IgG are older tests which have largely been replaced by the DGP. I wonder why she did not run the DGP since she seems to know that there is a newer test which is more accurate for children? (I know, rhetorical question, but valid or perhaps she is referring to the tTG as the 'new' test.)

As far as the diarrhea /constipation issue is concerned, many celiacs have both, some alternating. Obviously, if she is constipated, something has to get out somewhere, and sometimes the diarrhea can just shoot through and leave pockets of stool in pouches on the side. But you did say yourself that she had not been having diarrhea over the weekend so perhaps the stool had built up a bit. It would be hard in her case, I guess, to figure out what is her normal stool. :)

Were you afraid of the scope with biopsy for your daughter? It is really not incredibly invasive and they sedate them well so that they do not remember anything about it and no one on the forum that I am aware of has had a complication from it. However, that being said, scopes are not always accurate in young children. The genetic test does not really answer a lot of questions. It merely tells whether she has a likelihood of developing celiac disease in her lifetime. And it is not that good at doing that because there are other genes associated with celiac that they do not test for, and it does not tell you anything about non-celiac gluten intolerance, which it is also possible she has if not celiac itself.

By now I have probably confused you more than ever. Is there a possibility you could convince her to run the DGP test? (deamidated gliadin peptide).

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im confused, the scores below are positive? i ask because my daughter has similar numbers but the results say negative??

Anti-gliadin IgA - .21

Range - 0-.9

Anti-gliadin IgG - 3.26

Range – 0 - .9

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im confused, the scores below are positive? i ask because my daughter has similar numbers but the results say negative??

Anti-gliadin IgA - .21

Range - 0-.9

Anti-gliadin IgG - 3.26

Range – 0 - .9

Only the IgG score is positive - it would be easier to see if they printed it as Range 0.0 to 0.9, and her score was 3.26. The IgA range is the same, 0.0 to 0.9, and her score was 0.21 and therefore negative.

Testing is normally done with the IgA antibodies; her GI tested that she was a normal IgA producer (GAMMAGLOBULIN (IGA) IgA 58 22-157 mg/dL The IgG is not considered as specific for celiac disease. See, for instance,

If a patient’s celiac panel is only positive for antigliadin IgG, this is not highly suggestive for CELIAC DISEASE if the patient has a normal total IgA level, corrected for age.

http://americanceliac.org/celiac-disease/diagnosis/

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So, how do you explain this… Gluten free pretty much since last Friday. Totally normal bowel movements, two a day, four days in a row. Today, grandpa watched her. I’m giving the baby a bottle in her room while my 8 year old is playing with the 3 year old. I come out and hear the following conversation:

8yo: where did you get an Albertson cookie?!

3yo: downstairs

8yo: THAT’S why you have diarrhea

I pop in to the bathroom and say, “What’s going on in here? We don’t have Albertson’s cookies?”

3yo: yes we do, I’ll show you

We go downstairs where the 3 year old climbs on top of the garbage can and then reaches into a bag of chocolate chips. Wow. I say, you know you have your own cookies? She says, I couldn’t find them. I said, where was grandpa when you ate this cookie? She says, giving the baby a bottle.

So, what are the odds she eats a cookie (or more) at about noon and has diarrhea at 330?

I called her pediatrician and will see her next Tuesday. I’m going to ask her about those other blood tests. Anything else I should know? I need to cook dinner so I’ll be back later to go through the posts more.

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In my opinion, (and experience) a doctor who has made up his or her mind before any tests have been done that "It could not be celiac" is completely worthless, because they will then never change their minds as they run other tests looking for other things, and they do not listen. With that being said, if the doctor wants to do a biopsy (properly, with enough samples taken) then I would take that opportunity, because sometimes damage shows up there when the blood tests are unclear. You can also send away for a simple kit and do the genetic test over the counter, but listen to Mushroom at #5, because it is still possible to be celiac without the "proper" genes. However, if you are willing to pay for it, but the doctor is saying things like "it's expensive" then that is really not a good sign. :angry: This disease runs in families, after all, and it could be affecting other family members in the future. It is also possible that this is non- celiac gluten intolerance (NCGI) and the blood tests and biopsy will not support an "official diagnosis," but you can then test your daughter (as you are doing now) with a gluten free diet trial and see how she responds. It is possible to respond in a few days to omitting gluten, especially if there is not a lot of damage yet.

What is important is that somewhere you have had a doctor tell a nurse to call you and put the kid on a gluten free diet, so you've got a doctor who is on the correct track and was expecting to send you to a pedi GI who would then just run a biopsy to confirm it wasn't anything else. But if this pedi GI is right away telling you it's unlikely it's celiac... :ph34r:<_< So you need to know that if your daughter is off of gluten for any length of time, the reaction stops, and that ALSO screws up the biopsy results, so you don't want a big delay of waiting for many weeks or months to fit this into the pedi GI's schedule, because otherwise, that will come back negative. So if you are going the biopsy route, after a bit of self- testing the reaction to a gluten free diet, she (child) will need to go back on gluten for procedure. Do NOT let any GI doc bother to do an initial test to check for celiac, if the patient has been gluten free for a long time. That is a waste of time and insurance money. Sometimes later tests are done after the gluten free diet has been a long-time feature, to check to see if the antibody levels have dropped or if healing has taken place.

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Everyone is giving you sound advice... and I agree that the doctor sounds unusually defensive and unlikely to bend... never know though.

Tell your doctor that I started feeling better as soon as I stopped eating gluten. Much less pain. And my 5yo son, who appears to have non-celiac gluten intolerance (he tested negative), would have the runs DURING the same meal the he would eat gluten at nevermind hours later.

Best wishes with any further testing you decide to pursue, and with the gluten-free diet. :)

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