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1 Year Old Had A Pos Blood Test Neg Biopsy?!


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10 replies to this topic

#1 mmcc54

 
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Posted 30 June 2013 - 07:48 AM

My one year old had a pos blood test only IgG was positive..her IgA levels were normal. Her IgG was a 19 (anything over 9 pos) she also had a whole mess of thing in her blood work that were high/low...she had her biopsy and its pretty normal?! Dr said he saw some spots but it wasn't enough to diagnose celiacs, but that we should go gluten free!? Im confused! What could cause her IgG levels to be positive if its not celiacs?


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#2 GottaSki

 
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Posted 30 June 2013 - 08:06 AM

In my opinion she should be diagnosed with Celiac Disease.  Symptoms plus positive antibody test in someone so young = Celiac Disease -- again, my opinion.  All this means is she is creating antibodies to gluten, but does not yet have damage severe enough on the Marsh Scale.

 

here is a link to an explanation of Celiac Typing:

 

http://www.celiac.co...eliac/?p=827967

 

Now that testing is complete -- remove ALL gluten and monitor for symptom improvement -- keep a diary to bring to follow up appointments -- this would help if you should need an "official" celiac dx once your daughter enters school.

 

Hang in there Mom :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 GottaSki

 
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Posted 30 June 2013 - 08:11 AM

ps...make sure you have full celiac antibody panels run at 3mo, 6mo and then annually after that.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 justa

 
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Posted 30 June 2013 - 11:34 AM

Sounds very similar to our case.
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#5 justa

 
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Posted 30 June 2013 - 11:39 AM

These children are tiny and not all positive blood work means celiac however our kids may not have damage either since they are so little which is what they use to confirm in endo and genetic testing is an only could be test also so just all puzzle peices as I have been told.

Unfortunately only time will tell.

What confuses me most is going gluten free skews the results but you need to for their well being so they have you do that and diagnose a lot of times on results from that in conjunction with those findings.
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#6 GottaSki

 
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Posted 30 June 2013 - 12:42 PM

These children are tiny and not all positive blood work means celiac however our kids may not have damage either since they are so little which is what they use to confirm in endo and genetic testing is an only could be test also so just all puzzle peices as I have been told.

Unfortunately only time will tell.

What confuses me most is going gluten free skews the results but you need to for their well being so they have you do that and diagnose a lot of times on results from that in conjunction with those findings.

 

This is why it is important to remain on gluten until testing is complete.  Once the tests have been run, there is no reason not to remove all gluten and keep a symptom log/diary.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 justa

 
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Posted 30 June 2013 - 01:50 PM

This is why it is important to remain on gluten until testing is complete. Once the tests have been run, there is no reason not to remove all gluten and keep a symptom log/diary.


This is where I get confused.. They recommed to go gluten-free bc after the endo testing is basically done until they are older. So your saying keep giving them gluten until they retest?
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#8 shadowicewolf

 
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Posted 30 June 2013 - 02:19 PM

This is where I get confused.. They recommed to go gluten-free bc after the endo testing is basically done until they are older. So your saying keep giving them gluten until they retest?

No, it means that after that first batch of testing is done, both the blood and endo, you can try the diet as a final test. If you wish to have testing done when the child is older, then a gluten challenge would be required (eating gluten for a period of time). However, if the diet resolves all of the symptoms then, imo, you have your answer.


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#9 GottaSki

 
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Posted 30 June 2013 - 02:19 PM

This is where I get confused.. They recommed to go gluten-free bc after the endo testing is basically done until they are older. So your saying keep giving them gluten until they retest?

 

I am saying keep them gluten free and keep a symptom log.  If symptoms improve that is another part of diagnosis.  Continue to monitor FULL celiac panel (minimally annually), remain gluten-free and IF there is a question down the road -- THEN determine if a gluten challenge is necessary.  Current testing leaves a lot to be desired -- it is my hope this will change/improve with time.

 

Keep in mind that once gluten free for some time -- it may become impossible to ingest any -- thus another piece of the puzzle.  I know how tough this can be to understand -- in our family -- my own kids tested negative when I was diagnosed...yet removal of gluten improved or removed all their health issues.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 justa

 
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Posted 30 June 2013 - 03:15 PM

Ok this makes sense. 


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#11 bayba792

 
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Posted 01 July 2013 - 10:58 AM

I am having this problem with my 9 year old son. I took him off of gluten after he saw the GI a month before his endo and it came back negative. Now that my husband was diagnosed with celiac the peds GI wants me to put my son back on gluten so she could do the endo again. I explained to them that he was losing too much weight and had chronic pain and diarrhea and I didn't want to put him through that again. My whole family is gluten free (my husband, me, son (9), and son (5) we have all noticed improvements in our health because of it I don't even care to get the confirmed diagnosis. 

 

My son's pediatrician said since he has made such an improvement in health that she will write a prescription to the school that he cannot have gluten so we shall see how it goes.


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