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JJav123412

Child's results - confused

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My daughter (5) just had bloodwork done due to severe constipation.  They tested for celiac (family history) and other bowel disorders.  These are her results...

Her Antigliadin IgG is very high (moderate to strong positive). Everything else normal.  I keep reading different things but can not get a definitive answer on the high antigliadin.  The doctor has not given me any guidance yet - I just seen the results posted online.  Any ideas if this points towards celiac or something else?  Or is it normal?

Bowel Disorders Cascade
 
Atypical pANCA
Negative
 
 
Reference Range: Negative 
Note:
Cascade continues
 
Antigliadin IgG (native)
42
HIGH
Reference Range: 0-19 units

Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 .

 
tTG/DGP Screen
Negative
 
Reference Range: Negative 
Saccharomyces cerevisiae, IgG
<20.0
Reference Range: 0.0-24.9 

Negative <20.0 Equivocal 20.1 - 24.9 Positive >or= 25.0

 

Celiac Disease Panel
Immunoglobulin A, Qn, Serum
53
NORMAL
 
Reference Range: 51-220 mg/dL
t-Transglutaminase (tTG) IgA
<2
 
Reference Range: 0-3 

Negative 0 - 3 Weak Positive 4 - 10 Positive >10 . Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstr- ated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.

Endomysial Antibody IgA
Negative
 

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22 minutes ago, JJav123412 said:

My daughter (5) just had bloodwork done due to severe constipation.  They tested for celiac (family history) and other bowel disorders.  These are her results...

Her Antigliadin IgG is very high (moderate to strong positive). Everything else normal.  I keep reading different things but can not get a definitive answer on the high antigliadin.  The doctor has not given me any guidance yet - I just seen the results posted online.  Any ideas if this points towards celiac or something else?  Or is it normal?

Bowel Disorders Cascade
 
Atypical pANCA
 
Negative
 
 
 
Reference Range: Negative 
Note:
 
Cascade continues
 
 
Antigliadin IgG (native)
 
 
42
HIGH
Reference Range: 0-19 units

Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 .

 
tTG/DGP Screen
 
Negative
 
 
Reference Range: Negative 
Saccharomyces cerevisiae, IgG
 
<20.0
 
Reference Range: 0.0-24.9 

Negative <20.0 Equivocal 20.1 - 24.9 Positive >or= 25.0

 

 

Celiac Disease Panel
Immunoglobulin A, Qn, Serum
 
53
NORMAL
 
Reference Range: 51-220 mg/dL
t-Transglutaminase (tTG) IgA
 
<2
 
 
Reference Range: 0-3 

Negative 0 - 3 Weak Positive 4 - 10 Positive >10 . Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstr- ated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.

Endomysial Antibody IgA
 
Negative
 
 

Welcome!  

I am not a doctor, but I can tell you that I have (and continue to test even in follow up testing), tested positive to only the DGP IgA (your daughter's result a positive IgG).  My biopsies revealed patches of moderate to severe intestinal damage.  I was suffering from anemia.  Having an elevated DGP result is not common.  My research indicates that the very young and the very old can test this way.  

So, there is a reason why there are a variety of celiac blood tests.  They do not catch all celiacs.  In fact about 10% of celiacs are seronegative (negative on the blood tests).  So, with your family history, you should ask for a GI referral.  You daughter might have celiac disease or may just be developing it.  She might have an intolerance (which requires a gluten-free diet like a celiac), but no intestinal damage.  

Get to a celiac-savvy GI (if possible).  I am not suggesting a celiac center, but ask if the GI handles celiac patients.  In my GI's practice, they tend to specialize in disorders even within the GI tract!  Keep her on gluten until all testing is complete.  All celiac tests do not work, if you go gluten free.  

 

 

Edited by cyclinglady
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Hi,

So sorry your daughter isn't feeling well, and that the testing process has raised more questions. (We are going through something similar and I know how tough if is to watch a sick kid!).

Also not a doctor, but wanted to clarify some things about your testing.

From what I think I see , I think your daughter had a high AGA-IgG level, not a raised DGP-IgG level.

I think this test is not  as closely linked to celiac diagnosis - but to any of the five other common problems people have consuming wheat. I think I read that the IgG Antibody in this test is sometimes covering an IgE antibody (antibody against an antibody...who knew?) that is reacting in a wheat allergy.

here is a link that might be helpful in differentiating:

http://www.tenderfoodie.com/what-is-a-food-allergy-defini/

that said I don't know what test

"tTG/DGP Screen"

refers to.

Depending on what your doc says, if you have a high result you definitely want to follow up, either with a more comprehensive celiac panel - there are six possible tests) or perhaps with other investigations into possible wheat allergy. You might also want to ask your doctor to pursue tests that show evidence of inflammation to see if she is having other areas affected / other autoimmune complications.

Best wishes, - hope your daughter is feeling better - and you both have good answers soon!

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@Celiac's Wifey -- great catch!  You are right.  I assumed that the DGP test was run because it replaced the older and less reliable anti-gliadin test years ago.    

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3 hours ago, Celiac's Wifey said:

I think this test is not  as closely linked to celiac diagnosis - but to any of the five other common problems people have consuming wheat. I think I read that the IgG Antibody in this test is sometimes covering an IgE antibody (antibody against an antibody...who knew?) that is reacting in a wheat allergy.

The AGA/IgA and AGA/IgG tests are reliable and I am not sure why some consider them not as reliable.  They are just the older versions of the current DGP testing, which is more sensitive than the AGA testing.  I have full blown Celiac Disease and I failed both AGA tests at diagnosis by high numbers but I was 46 years old at the time and was pretty much in the late stages of distress from undiagnosed Celiac. So, the AGA tests can very well indicate Celiac Disease but one positive does not prove it unconditionally.

The IgG antibody is the most common circulating serum antibody in humans and IgA is the second most common.  My thoughts on this as a non medical person are that in most 5 year old's, they haven't been alive long enough to build up enough of an antibody response to trip most of the tests on the panel.  But, interestingly, she tripped the IgG class, which is the most common and plentiful and may show a positive sooner than the IgA class of antibodies.  This could a total BS line of thinking but I believe if she does have Celiac, it's only a matter of time and gluten consumption before the IgA tests are tripped also.  With a family history of Celiac, this should not be discounted as a nothing result.  You could move on to a biopsy but they may not find damage even though she may have Celiac.  It's hard to diagnose in adults, never mind a small child who may just not have enough damage yet.

 

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2 hours ago, Gemini said:

 

Oh, I love your BS line of thinking!  ?

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I wasn't trying to suggest not to take it seriously, or that it isn't celiac, or anything like that. Just that there might be manifestations of a problem with wheat that won't show up in her daughter's upper intestine. To be clear, even if they don't, I absolutely believe her daughter may have a serious and complicating problem with wheat or gliadin, that should still be followed up on by mom & her daughter's docs. And if it might show up somewhere else (with allergy, inflammation testing, or other IgG testing or celiac testing)  I'd just want her to consider trying all avenues so that she isn't blown off by doctors telling her it can't possibly be celiac.  I admit I am just learning, and I certainly don't know enough about the other bowel tests run to speculate of what sort of screening this was (but that one result of "20" in a five year old, when "20.1" is equivocal I would also be curious about as a mom!) Finally I posted in kind of a hurry. If I  wasn't clear, or if it sounded like discouragement to pursue more info, I totally apologize. 

Gemini, thinking about what you said about the AGA tests --

-"The AGA/IgA and AGA/IgG tests are reliable and I am not sure why some consider them not as reliable.  They are just the older versions of the current DGP testing, which is more sensitive than the AGA testing. 

I have been wondering about why they are being moved away from too. I know that the specificity and sensitivity of these tests is medically considered not as high -- but from what I understand I think that is because they were showing high in more people where subsequent endoscopic biopsy didn't show measurable 'celiac' damage....

Which to me actually begs a whole series of other questions. It is well established in the medical community that reactivity to wheat in some immune-mediated way (IgE - allergy, IgG - Allergy, NCGS, & Celiac, IgA - celiac) is actually really common - up to 10% of total human population by conservative estimates. 

I've been reading more of Dr. Alessio Fasanos papers on zonulin / interactivity with gut wall being affected by gliadin (one of the protein pieces of wheat that acts as a mimic -- also to thyroid hormone (and potential others!)) and potential links/ causation to literally dozens of other autoimmune conditions and also his 2014 interview on why the endoscopy isn't considered the gold standard of celiac diagnosis or even silver or copper anymore because it would be so much better to catch this condition before significant and measurable damage to the upper intestine happens. And honestly, I don't (yet) fully understand the eight million things I have been reading in the last three weeks. But I am reading them because my kid popped high on one of these serology markers, is symptomatic of the disease, has strong family history -- but when the endoscopy showed no damage (yet) we were told it can't possibly be celiac. And if I hadn't decided to post to this board, and seek more info, I might have moved on. And I'm really glad I didn't. And I am really grateful to the support I've found on this board.

In the meantime, we are currently waiting for the second more extensive rounds of blood testing for daughter one, and first rounds on daughters 2 and 3. Daughter 3, who is only 3, has now had four consecutive bowel movements covered in white, or with really weird looking white stringy patches that are making me very concerned she might be having possible gallbladder or liver complications from unfound celiac -- while I am sitting around feeding her more gluten so I don't invalidate a future possible endoscopy! This way of finding this disease SUCKS. It totally sucks, and it is completely stressful, and I am definitely certain that we are getting all wheat and gluten the hell out of our house and soon. At this point, I honestly believe that daughter #1 has what-will-become-celiac disease -- but may wind up without a diagnosis (an annoying potential problem with school interactions and trying to get them to take it seriously) and I believe that it underscores a problem with the whole way this disease is currently defined and diagnosed. Many old school researchers and thinkers are saying you must have villous atrophy to be a celiac and some of the new research directions seem to be suggesting that there are sharp differences between the medical communities understanding of the adaptive immune processes at play versus people with innate immunity to gliadin. I am not a medical doctor, just another mom trying to figure-out-what-the hell is hurting my child's / (possibly childrens) health...but here is what I think: 

Hell yeah, original mom who posted - follow up like crazy on that AGA IgG result. Read a million medical studies and posts here. Follow up more. And if the doctors tell you it is nothing to worry about, or if they can't explain it or diagnose why, and you still have mom suspicion, ask another doctor. And if you still think the answers aren't great, ask again. And then, consider getting wheat and barley and rye out of your daughter's diet regardless of what the doctors say and see if her constipation clears up, and if she feels way better. (In pediatric cases shouldn't this be the FIRST advice to parents? Response to the diet??? I am frustrated by docs who have been telling me for weeks to potentially poison my kids more so their results are more definitive and less equivocal! And given my children's family history with this disease (dad, aunt, grandfather and more all diagnosed), as a parent I feel that it is a horrible ethical conflict to ask a parent to keep feeding their kids something that has a pretty high chance of being a culprit in making them sick -- it does not feel like 'do no harm' to keep giving my kids more gluten! It feels like I might be poisoning my kids and causing them other problems! All in the name of a positive endoscopy result??)

At this point my theory of this disease is that it might attack dozens of other organs or systems in your body before it ever gets around to attacking your upper intestine. So if the AGA and DGP tests are finding this, but there is no findable gut damage, should that be called 'early celiac'? 'Wheat Intolerance Syndrome'? Something else? Hell, if pushed to make a super unqualified bet, I honestly suspect that all the variants of NCGS, gluten intolerange, IBS, the delayed / tcell mediated wheat allergy (not the histamine one), dermatitis herpetiformis, hell possibly even all 'eczema', not to mention a lot of other neurological problems, and mental health problems may all be caused by the same initial problem with gliadin. Maybe in people with 2 HL DQ2 alleles it attacks the intestines pretty early, in DQ8s maybe skin is hit early in, maybe in those with DQ7s it is hitting lower intestine or bowel, respiratory, skin, or brain&mood systems first...I don't know. But at this point I honestly think a large number of these people will likely wind up with villious atrophy at some future unknowable tipping point specific to their body / their genes / their environment / their exposures etc. if they live long enough. I don't believe "celiac can show up at any point" and  "if you are in the risk group keep being tested every three years." Or that it shows up without explanation in a seventy-year-old who had eaten wheat their whole life. I believe it is showing up -- in literally hundreds of other symptoms and dozens of other diseases that it has triggered. But we aren't supposed to call it celiac or recognize the problem until it gets to the upper intestine. I suspect that for some people it goes there early. And for others it doesn't, but they are having just as many (just different) complications from the disease.

Crap.

I know this is a rant-y, and I offer my honest sincere apologies to all. I am currently really really worried about all three of my kids, and what I am contributing to in them by keeping gluten in their diets....

Other worried mom, totally sincere best wishes to you and your little girl.

 

 

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6 hours ago, Gemini said:

The AGA/IgA and AGA/IgG tests are reliable and I am not sure why some consider them not as reliable.  They are just the older versions of the current DGP testing, which is more sensitive than the AGA testing. 

Sorry. Couldn't get this quote to go in correctly. See post above.

Edited by Celiac's Wifey
quote problem.

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You really have been doing your homework, haven't you?  ;)  I am quite impressed at your new knowledge and you have some really good idea's and opinions on the whole Celiac spectrum!  I completely agree with most of what you have said and find it interesting because I am one of the ones with lots of collateral damage so find your thoughts interesting.  I think that once Celiac triggers but you don't know for a long time, then your immune system doesn't just attack the small intestine only. It goes off on other pathways and attacks other healthy tissue and organs. The genetics may very well have something to do with the direction it takes.  I love that you keep on pushing for answers because many people don't and their kids get sicker and sicker. Drives me crazy.

No need to apologize for anything. I may not have worded my response well and didn't mean to imply that you didn't think the testing reliable. They are older versions of the DGP but I think all these tests should be run as this disease can be so hard to pinpoint and more testing points can be helpful. You never know which ones will show a result. Don't worry.......you will figure this out and get your kids on the right track!

 

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4 hours ago, cyclinglady said:

Oh, I love your BS line of thinking!  ?

Thanks!  I just wish the doctors would put more thought into it instead of closing their minds when they see a negative or only 1 positive. It seems this board understands testing better than most GI's..........^_^

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10 hours ago, Celiac's Wifey said:

I wasn't trying to suggest not to take it seriously, or that it isn't celiac, or anything like that. Just that there might be manifestations of a problem with wheat that won't show up in her daughter's upper intestine. To be clear, even if they don't, I absolutely believe her daughter may have a serious and complicating problem with wheat or gliadin, that should still be followed up on by mom & her daughter's docs. And if it might show up somewhere else (with allergy, inflammation testing, or other IgG testing or celiac testing)  I'd just want her to consider trying all avenues so that she isn't blown off by doctors telling her it can't possibly be celiac.  I admit I am just learning, and I certainly don't know enough about the other bowel tests run to speculate of what sort of screening this was (but that one result of "20" in a five year old, when "20.1" is equivocal I would also be curious about as a mom!) Finally I posted in kind of a hurry. If I  wasn't clear, or if it sounded like discouragement to pursue more info, I totally apologize. 

Gemini, thinking about what you said about the AGA tests --

-"The AGA/IgA and AGA/IgG tests are reliable and I am not sure why some consider them not as reliable.  They are just the older versions of the current DGP testing, which is more sensitive than the AGA testing. 

I have been wondering about why they are being moved away from too. I know that the specificity and sensitivity of these tests is medically considered not as high -- but from what I understand I think that is because they were showing high in more people where subsequent endoscopic biopsy didn't show measurable 'celiac' damage....

Which to me actually begs a whole series of other questions. It is well established in the medical community that reactivity to wheat in some immune-mediated way (IgE - allergy, IgG - Allergy, NCGS, & Celiac, IgA - celiac) is actually really common - up to 10% of total human population by conservative estimates. 

I've been reading more of Dr. Alessio Fasanos papers on zonulin / interactivity with gut wall being affected by gliadin (one of the protein pieces of wheat that acts as a mimic -- also to thyroid hormone (and potential others!)) and potential links/ causation to literally dozens of other autoimmune conditions and also his 2014 interview on why the endoscopy isn't considered the gold standard of celiac diagnosis or even silver or copper anymore because it would be so much better to catch this condition before significant and measurable damage to the upper intestine happens. And honestly, I don't (yet) fully understand the eight million things I have been reading in the last three weeks. But I am reading them because my kid popped high on one of these serology markers, is symptomatic of the disease, has strong family history -- but when the endoscopy showed no damage (yet) we were told it can't possibly be celiac. And if I hadn't decided to post to this board, and seek more info, I might have moved on. And I'm really glad I didn't. And I am really grateful to the support I've found on this board.

In the meantime, we are currently waiting for the second more extensive rounds of blood testing for daughter one, and first rounds on daughters 2 and 3. Daughter 3, who is only 3, has now had four consecutive bowel movements covered in white, or with really weird looking white stringy patches that are making me very concerned she might be having possible gallbladder or liver complications from unfound celiac -- while I am sitting around feeding her more gluten so I don't invalidate a future possible endoscopy! This way of finding this disease SUCKS. It totally sucks, and it is completely stressful, and I am definitely certain that we are getting all wheat and gluten the hell out of our house and soon. At this point, I honestly believe that daughter #1 has what-will-become-celiac disease -- but may wind up without a diagnosis (an annoying potential problem with school interactions and trying to get them to take it seriously) and I believe that it underscores a problem with the whole way this disease is currently defined and diagnosed. Many old school researchers and thinkers are saying you must have villous atrophy to be a celiac and some of the new research directions seem to be suggesting that there are sharp differences between the medical communities understanding of the adaptive immune processes at play versus people with innate immunity to gliadin. I am not a medical doctor, just another mom trying to figure-out-what-the hell is hurting my child's / (possibly childrens) health...but here is what I think: 

Hell yeah, original mom who posted - follow up like crazy on that AGA IgG result. Read a million medical studies and posts here. Follow up more. And if the doctors tell you it is nothing to worry about, or if they can't explain it or diagnose why, and you still have mom suspicion, ask another doctor. And if you still think the answers aren't great, ask again. And then, consider getting wheat and barley and rye out of your daughter's diet regardless of what the doctors say and see if her constipation clears up, and if she feels way better. (In pediatric cases shouldn't this be the FIRST advice to parents? Response to the diet??? I am frustrated by docs who have been telling me for weeks to potentially poison my kids more so their results are more definitive and less equivocal! And given my children's family history with this disease (dad, aunt, grandfather and more all diagnosed), as a parent I feel that it is a horrible ethical conflict to ask a parent to keep feeding their kids something that has a pretty high chance of being a culprit in making them sick -- it does not feel like 'do no harm' to keep giving my kids more gluten! It feels like I might be poisoning my kids and causing them other problems! All in the name of a positive endoscopy result??)

At this point my theory of this disease is that it might attack dozens of other organs or systems in your body before it ever gets around to attacking your upper intestine. So if the AGA and DGP tests are finding this, but there is no findable gut damage, should that be called 'early celiac'? 'Wheat Intolerance Syndrome'? Something else? Hell, if pushed to make a super unqualified bet, I honestly suspect that all the variants of NCGS, gluten intolerange, IBS, the delayed / tcell mediated wheat allergy (not the histamine one), dermatitis herpetiformis, hell possibly even all 'eczema', not to mention a lot of other neurological problems, and mental health problems may all be caused by the same initial problem with gliadin. Maybe in people with 2 HL DQ2 alleles it attacks the intestines pretty early, in DQ8s maybe skin is hit early in, maybe in those with DQ7s it is hitting lower intestine or bowel, respiratory, skin, or brain&mood systems first...I don't know. But at this point I honestly think a large number of these people will likely wind up with villious atrophy at some future unknowable tipping point specific to their body / their genes / their environment / their exposures etc. if they live long enough. I don't believe "celiac can show up at any point" and  "if you are in the risk group keep being tested every three years." Or that it shows up without explanation in a seventy-year-old who had eaten wheat their whole life. I believe it is showing up -- in literally hundreds of other symptoms and dozens of other diseases that it has triggered. But we aren't supposed to call it celiac or recognize the problem until it gets to the upper intestine. I suspect that for some people it goes there early. And for others it doesn't, but they are having just as many (just different) complications from the disease.

Crap.

I know this is a rant-y, and I offer my honest sincere apologies to all. I am currently really really worried about all three of my kids, and what I am contributing to in them by keeping gluten in their diets....

Other worried mom, totally sincere best wishes to you and your little girl.

 

 

Rand and vent, this disease is one of the most back assward and f-ed up to diagnose, yeah eat poison to prove it is poisonous, then tell you to eat more til the damage becomes apparent.  Yeah I would have SEVERE reactions to gluten with full neurological, nerve, and gut issues....I was more scared of what it used to do to my mind, I lived with the gut pain, 5-11 day constipation spells and puking almost daily for almost a decade and considered it NORMAL.  Then later in life the nerve and brain effects hit...that was a nightmare. Ever had your own mind and body turn on you? Like you know you should be able to do something or think about something, (computer wise, speech wise, thought process) and you could not do it? Like a bad dream in real life you mind keeps looping like a broken record unable to do what you want. Randomly losing all strength and unable to hold something......SCARY as all hell. This freaked me the most, I did a whole rant on it over a year ago. I was so scared, confused and freaked out I would have random violent outburst, breaking things snapping, etc. When I learned it was gluten causing it and got a odd but confirmed dia. I would just about threaten to kill anyone that poisoned me or did something stupid in the kitchen I was scared to death of my mind reverting to that old state.....like a nightmare in real life. I burned a bunch of bridges and alienated myself back then.   I have since sold almost all my assets, my bucket list collection of stuff from when I thought I was dying even,  Used the money to build out my own 100% dedicated safe home free from gluten from scratch with EVERYTHING new in. Took several years, but I have since quite enjoyed my safe home, and healed quite a bit. My symptoms have evolved a bit, developed other AI issues and allergies......yeah long story short this disease will mess with and change you life in drastic ways. But I made the best out of it and started a gluten free bakery, do chef work, and sell at farmers markets. I dream of opening a gluten free and grain free food truck.  I mean if the chef and owner has celiac, and manages a 100% gluten-free truck that is one I would trust over anything else.

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Thank you all so much for all of your opinions, suggestions and comments!!  I am definitely following up with a GI specialist and maybe an allergist.  I also started keeping a log of what she eats during the day (she tends to gravitate towards gluten-free stuff more often then not so for her result to be high when she is eating mostly gluten-free is concerning as well).  And the reason she eats a lot of gluten-free is because she was allergic to milk until the age of 2 so we bought a lot of allergen free products that she is just used to eating still.  Don't get me wrong, she still eats some gluten everyday but not a lot.  I am going through a similar situation with my oldest as well.  She is 7, has the gene for celiac, is IgA deficient and has a high ttg-igg result.  They never performed more thorough tests like the DGP or AGA or EMA on her.  Yet they told me she was positive for celiac, when she was 18months, based on her ttg-igg result and performed a biopsy which of course was negative (knew it would be given her age).  I was then told she doesn't have it and that was that.  It is very frustrating but I need to follow up with both children.  My husband as well tested high on the ttg-igg test but drs told him he is fine but can't give an answer as to why both have an elevated ttg-igg level. Told him to just see if symptoms get worse and retest every year.

Back to my youngest, her primary still has not called me about her results - thank goodness I can view them online myself!  I'm not even sure they will call me.  I get dismissed a lot.  But I am a concerned parent and I will keep pushing for answers!

Good luck to you too Celiac's Wifey!  I hope you get the answers you are looking for as well!

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I totally get Celiac's Wifey's line of thinking & agree wholeheartedly!

I would like to build upon what Celiac's Wifey said but I'm not going to repeat what she said; I'm going in a different direction.

I think that the particular source of gluten also plays a part in our physical reactions. I think there are subsets of celiacs if you will. those subsets can be divided into those who react more strongly  to wheat, some who react more strongly  to barley and then ones who react more strongly  to rye and then even perhaps those of us who react to even purity protocol oats.

From as far back as I remember, I had near immediate, severely painful & violent GI reactions to malt. Anything having any malt in it. I could eat bread & other gluten foods but malt would get me every single time. I don't recall at what age exactly that I connected the dots to malt being the source of the problem but I was young, probably it was around 10 years oldish???? That is when I began giving the malted milk balls I had gotten for halloween to my sister and began checking foods for malt ingredients & avoiding them. Of course I tested this theory many times, because I just didn't believe a little malt would hurt anyone. After all, everyone ate or drank stuff with malt in it & they didn't die is what my child brain told me. I never even told my parents about my reactions to it. I just said I hate malt. 

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Just an update...

I took my daughter to the GI dr today.  He reviewed her results and said that her AGA IgG result either means nothing or is a false positive.  He doesn't want to scope (neither do I for that matter).  He said that he doesn't know what the ttg/dgp test is but her IgA is normal even with her total Iga is borderline so that is the test most likely to show celiac.  He isn't sure what to make of her results because the Aga usually isn't run anymore and NCGS is "controversial." So bottom line is I got no answers.

He wants to repeat with a full, complete panel & genetic testing in about a year.  He said, besides her constipation issue, she is within the 20th percentile for height and weight and is overall healthy. 

So frustrated.  But, to be honest, I wasn't going into this appointment very optimistic.  I kind of knew I wasn't going to get answers.

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I went through two years of docs, 3 endoscopies, two gluten challenges and conflicting serology results of the SAME antibody even while ON gluten.

My specialist now is Dr. Fasano (the last biopsy showed Marsh 2-3A). Both Fasano and other researchers have acknowledged DGP is fallible but better then AGA. The original doc who "discovered" AGA (Volta) also notes both it, as well as DGP, has the potential to be false positive.

I am surprised your lab uses the AGA tests.

That being said...

Holy crap did I have some wacky s$#& in the last 2 years and am DQ2 positive with a sibling with TTG/EMA negative biopsy proven celiac.

My son is next to be screened. Interestingly enough, his pediatrician's daughter was just diagnosed celiac and his pediatrician informed me that she is glad, in some ways, her daughter was able to eat gluten for the years she could. They have celiac in the family as well so were aware of it and her daughter presented with classic symptoms when it hit. It struck me as interesting because they were watching for it, but not looking for it too hard either. I think for those with symptoms/health issues that are non classic (i.e., neuro, you may want a diagnosis sooner.

So depending on what your gut says and how your child's health is, you may want to take that medical record to a specialist. That is what I ended up having to do and I went through three GI doctors in my hometown first.

But have the kiddo stay on the gluten. Being on and off of it over a couple of years may have skewed things for me. The first gluten challenge was not long enough.

TTG/DGP test is just a combined assay of the antibodies. There are a couple of these. DGP-TTG, DGP (combines both IGA and IGG). I am hesitant about these combined tests. I come back positive on DGP screen but negative (mostly) on the separated DGP IGA and IGG screens.

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