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New To Celiac. Test Results--Celiac Or Gluten Sensitivity?


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#1 decemberhill

 
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Posted 05 March 2013 - 01:01 PM

My 5 year old daughter had lab work done because of her weight. She has not gained anything in over 2 years and is sitting steady at 32 pounds, she will be 6 in July. Her lab work came back yesterday with the result of possible Celiac Disease and her PCM has referred her to a Gastroenterologist...just waiting for the referral to go through. I am completely clueless about all of this, nothing like this crossed my mind...I actually figured it would be a thyroid issue. I went through her symptoms the last few years and this is what I have...

 

Decreased appetite

Diarrhea (not constant but at least once or twice a week)

Easily bruises

Very poor weight gain

Fatigue

Mouth Sores

 

Since I am so new to any of this, I have tried really hard to look through all the lab results here and try to decipher my daughters. I have spent the whole afternoon reading this site. 

 

Here are the labs

 

IgA 143 (Normal) Limits 33-185 mg/dL

Endomysial Screen (Negative)

tTG Ab, IgA 2.0 Range <20 Negative, 20-25 Equivocal, >25 Positive

 

Gliadin Peptide Ab, IgG 22.6 (Abnormal) Range <20 Negative, 20-25 Equivocal, >25 Positive

Gliadin Peptide Ab, IgA 4.1 (Normal) Range <20 Negative, 20-25 Equivocal, >25 Positive

 

tTG Ab, IgG 17.4 (Normal) Range <20 Negative, 20-25 Equivocal, >25 Positive

 

Thanks in advance to anyone who can offer me some input! 

 

 


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#2 mushroom

 
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Posted 07 March 2013 - 07:33 PM

Welcome to the board, decemberhill,  :) and I am sorry it looks like your post has been missed and overlooked :(   Let me attempt to rectify.

 

Your daughter's blood test results show that she makes normal quantity of IgA antibodies, and therefore the IgA testing should be valid for her.

 

The most specific test, endomysial antibodies (EMA) is not positive and her tTG Ab IgA is also negative, as is her Gliadin Peptide Ab IgA (DGP IgA).  However, her Gliadin Peptide Ab IgG (also known as DGP IgG)  is positive.  IgA and IgG are both autoimmune antibodies.  The IgA is usually used and considered to be the celiac antibody; but if an individual does not make normal total quantities of IgA they use the IgG tests.

 

There has recently been some discussion on the board about the meaning of IgG positives on the DGP, and what it means if the person being tested is a normal IgA producer.  Nobody so far has been able to state that it means anything other than celiac disease.  This is probably the reason for the GI referral, so that he can do an endoscopy with biopsy to check for celiac damage in the small intestine.  Do not let him say it is not necessary.  Insist on having it done, and that he take at least 6 samples, because the DGP is the most sensitive of the tests and tends to catch early celiac disease, before there is too much damage.  And if there is not too much damage the naked eye is unable to see it and we have to rely on the biopsy samples and the microscope :)


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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 powerofpositivethinking

 
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Posted 08 March 2013 - 02:15 AM

Decemberhill,

 

The only test I came back positive on was the DGP igG.  I am currently waiting for my biopsy results to come back in a few weeks.  I see that your daughter bruises easily, as I do too.  I thought it was something to do with my iron, but it turned out my iron and ferritin levels were fine.  I'm deficient in Vitamin K, which also causes bruising  :wacko:

 

here are two links to threads I have started:

http://www.celiac.co...results-please/

http://www.celiac.co...besides-celiac/

 

hope these give you some other ideas!


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#4 decemberhill

 
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Posted 08 March 2013 - 12:28 PM

Thank you so much for your responses. The other diagnosis they are throwing around is Cystic Fibrosis and we go in to talk about that on Thursday. I would much rather it be a Gluten issue. 

 

From my reading and I hope I am correct...the test she was positive with, the DGP IgG shows that there is tissue damage relating to gluten? Also, on two of the tests testing IgA are low...does that mean anything or is that a good thing? Our referral for GI has been approved, although the Dr she was referred to does not treat children so I had to find her a pediatric GI which I think works much better. The Ped Dr has a special interest in Celiac. 

 

PowerOfPositive...please let me know how your biopsies turn out. Looking at so many labs and trying to decipher, I remember seeing your post about only being positive with the DGP IgG. I have started a food diary for my daughter as well as documenting her poo everyday. Is there anything else I should document or note? The GI said that new patient appts are already booked into June...so I think it's going to be a long time before we can get in...unless we get lucky and get a cancellation! 

 

Again, thank y'all so much. This board has been really helpful!


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#5 mushroom

 
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Posted 08 March 2013 - 01:13 PM

Normally, the IgA testing is considered to be best for those who are IgA sufficient.  The DGP is a newer test than the tTG, is more specific for celiac disease, and tends to pick it up earlier than the tTG.    The low IgA results just show that those tests were negative.  So long as she makes sufficient overall IgA, the low scores on IgA testing have no special significance.  You do not have to be positive on all tests to be celiac - why having the entire panel is recommended.


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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#6 decemberhill

 
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Posted 08 March 2013 - 01:28 PM

Thanks, Mushroom! That makes sense. 


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#7 powerofpositivethinking

 
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Posted 09 March 2013 - 04:19 AM

Thank you so much for your responses. The other diagnosis they are throwing around is Cystic Fibrosis and we go in to talk about that on Thursday. I would much rather it be a Gluten issue. 

 

From my reading and I hope I am correct...the test she was positive with, the DGP IgG shows that there is tissue damage relating to gluten? Also, on two of the tests testing IgA are low...does that mean anything or is that a good thing? Our referral for GI has been approved, although the Dr she was referred to does not treat children so I had to find her a pediatric GI which I think works much better. The Ped Dr has a special interest in Celiac. 

 

PowerOfPositive...please let me know how your biopsies turn out. Looking at so many labs and trying to decipher, I remember seeing your post about only being positive with the DGP IgG. I have started a food diary for my daughter as well as documenting her poo everyday. Is there anything else I should document or note? The GI said that new patient appts are already booked into June...so I think it's going to be a long time before we can get in...unless we get lucky and get a cancellation! 

 

Again, thank y'all so much. This board has been really helpful!

 

 

 

 

I will let you know how my biopsies turn out!  I definitely think keeping a food and poop diary would be great.  I even talked about my bowel movements to the GI with the bristol stool chart in mind.  Check it out if you haven't!  I would also suggest keeping track of water.  During my first GI appointment when I said I was frequently bloated and constipated, he asked the obligatory questions of how much fiber and water are in my diet.  I was able to tell him I usually drink between 60-80 oz. of pure water a day in addition to the fruits and veggies I eat.  Documenting any rashes of anything with pictures would also be very helpful.  According to Dr. Rodney Ford, DGP is suggestive of gluten gut damage http://drrodneyford....lood-tests.html  I am iga sufficient, but my IGA scores were both low.  I'm a 27 y/o female, but since your daughter is 5, Dr. Ford says that ttG is not as reliable in children.  

 

When the GI was going over reasons for Vitamin K deficiency, he mentioned cystic fibrosis, but people tend to be diagnosed as children so that was not applicable to me.  Are you able to get vitamin and mineral testing for children?  can anyone please help me out with this question?  Based on what you said, I would definitely make sure she is tested for Vitamin K.  If you can get your GP to do this, that will give you more information for your GI appointment.   I asked my OB/GYN if she would be willing to order vitamin/mineral testing for me, which thankfully she did without a problem.  When I had my second appointment with the GI, I said my OB/GYN sent you results from some more testing.  He said that Vitamin D deficiency was common, but I peaked his interest when I said I was Vitamin K deficient.  He said he normally doesn't see patients with that deficiency, and according to University of Maryland, a GI doctor is the type of doctor I would expect to see this deficiency since a lot causes seem to be malabsorption issues.  http://www.umm.edu/a...in-k-000343.htm  I haven't used antibiotics since last April, I don't have a blocked bile duct, no serious burns, so it seems that it's due to some kind of malabsorption for me.  I will be taking 5 mg of Vitamin K a day and 2000 iu of Vitamin D as directed by my OB/GYN and GI.  

 

I would suggest calling the GI to see if you can get in on a cancellation.  Repeated phone calls are not a bad thing  :)   I hope she starts feeling better soon!!


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#8 RobinB28

 
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Posted 31 March 2013 - 12:55 PM

I will let you know how my biopsies turn out!  I definitely think keeping a food and poop diary would be great.  I even talked about my bowel movements to the GI with the bristol stool chart in mind.  Check it out if you haven't!  I would also suggest keeping track of water.  During my first GI appointment when I said I was frequently bloated and constipated, he asked the obligatory questions of how much fiber and water are in my diet.  I was able to tell him I usually drink between 60-80 oz. of pure water a day in addition to the fruits and veggies I eat.  Documenting any rashes of anything with pictures would also be very helpful.  According to Dr. Rodney Ford, DGP is suggestive of gluten gut damage http://drrodneyford....lood-tests.html  I am iga sufficient, but my IGA scores were both low.  I'm a 27 y/o female, but since your daughter is 5, Dr. Ford says that ttG is not as reliable in children.  

 

When the GI was going over reasons for Vitamin K deficiency, he mentioned cystic fibrosis, but people tend to be diagnosed as children so that was not applicable to me.  Are you able to get vitamin and mineral testing for children?  can anyone please help me out with this question?  Based on what you said, I would definitely make sure she is tested for Vitamin K.  If you can get your GP to do this, that will give you more information for your GI appointment.   I asked my OB/GYN if she would be willing to order vitamin/mineral testing for me, which thankfully she did without a problem.  When I had my second appointment with the GI, I said my OB/GYN sent you results from some more testing.  He said that Vitamin D deficiency was common, but I peaked his interest when I said I was Vitamin K deficient.  He said he normally doesn't see patients with that deficiency, and according to University of Maryland, a GI doctor is the type of doctor I would expect to see this deficiency since a lot causes seem to be malabsorption issues.  http://www.umm.edu/a...in-k-000343.htm  I haven't used antibiotics since last April, I don't have a blocked bile duct, no serious burns, so it seems that it's due to some kind of malabsorption for me.  I will be taking 5 mg of Vitamin K a day and 2000 iu of Vitamin D as directed by my OB/GYN and GI.  

 

I would suggest calling the GI to see if you can get in on a cancellation.  Repeated phone calls are not a bad thing  :)   I hope she starts feeling better soon!!

It's entirely possible to be diagnosed with Cystic Fibrosis and Celiacs. I myself have both, I was diagnosed with CF at 6 months old but struggled until I was 26 with a lot of numerous health issues. I think having CF made my docs write off the possibility of Celiacs also being an issue but the vitamin deficiencies are the same and a lot of the symptoms are the same. Many people have been diagnosed as adults with CF, the oldest person ever diagnosed was in her sixties and her only symptoms up until then were chronic sinus infections and a few bouts of pnuemonia. Get tested for both.


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#9 1desperateladysaved

 
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Posted 31 March 2013 - 06:24 PM

An osteopathic functional medicine doctor I had my 9 year old son too was offering nutrient absorption tests for him.  Yes, children may get them.  Some chiropractors can order them.  In the end my son didn't have them.  I had nutrient tests and they were very helpful for me.

 

Diana


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#10 Aprilelayne

 
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Posted 01 April 2013 - 04:48 AM

While we are still in the testing mode for my 2yr old...just wanted to confirm that nutrient testing is also done at the young age.

She's had a baseline and a followup already since she was 18months old.

 

(granted no closer to a dx, but we are watching nutrient levels)


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DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#11 kareng

 
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Posted 01 April 2013 - 07:36 AM

While we are still in the testing mode for my 2yr old...just wanted to confirm that nutrient testing is also done at the young age.
She's had a baseline and a followup already since she was 18months old.
 
(granted no closer to a dx, but we are watching nutrient levels)


Not sure what exactly you mean? A doctor can test blood to see if the iron, vit D, B12, etc is at a good level or not. I would be careful about some of these " tests" by "doctors" that are not MDs. Many have no real science behind them and are designed to extract your money as insurance won't cover them.
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#12 Aprilelayne

 
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Posted 01 April 2013 - 07:51 AM

Sorry, my post was in response to the question here:

When the GI was going over reasons for Vitamin K deficiency, he mentioned cystic fibrosis, but people tend to be diagnosed as children so that was not applicable to me.  Are you able to get vitamin and mineral testing for children?  can anyone please help me out with this question?  Based on what you said, I would definitely make sure she is tested for Vitamin K.  If you can get your GP to do this, that will give you more information for your GI appointment. 

Yes, any MD is able to the testing, as we are seeing only MDs for my daughter's dx quest.

 

I'm sorry if I confused anyone if I misread the question.


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(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#13 kareng

 
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Posted 01 April 2013 - 07:58 AM

Sorry, my post was in response to the question here:

Yes, any MD is able to the testing, as we are seeing only MDs for my daughter's dx quest.

I'm sorry if I confused anyone if I misread the question.

Great! Lots of stuff posted in between! :)

I see no reason her pediatrician couldn't test her blood for vitamins, etc.

I found this but it seems a bit extreme if you haven't had blood levels done first. Maybe something down the road if things don't improve?

http://www.nlm.nih.g...icle/003606.htm
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