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New! Help With Test Results, Please!


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6 replies to this topic

#1 Rubyloo

 
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Posted 02 March 2013 - 11:48 AM

Hi, I apologize in advance if this post gets a little long, but I am in the process o try to figuring out if my 3 year old daughter has celiacs and If I might too.

6 years ago I was tested for celiacs. My blood work came back with what my dr. Called a "mix bag" for celiacs. I got biopsies taken which came back negative. I was told I didn't have it, no follow up, no nothing. I regret not perusing a more definite diagnosis, but I was young and trusted what the doctors told me. 2 years later after the birth of my daughter I began experiencing a lot of strange health problem ( physical and mental). Dr. Couldn't find anything wrong (I was not retested for celiacs). At the advise of my therapist I decided to try a gluten free diet. It helped a lot, so I concluded that I had gluten sensitivity. I mostly feel better, but will get returning symptoms occasionally, especially after eating out (CC I assume). Most recently my daughter started showing symptoms of celiacs and her PCP ran blood test. We were told she might indeed have celiacs.
We have an appointment with a GI in 2 weeks, but I was wondering what you kind people make of our blood test results?

My results

Total iga- 64 flagged as low. Range: low-81 high 463

Anti-gliadin ab, igg- 20 flagged as high. Range: low-0 high-19

Gliadin iga ab- 6 normal. Range low 0 high 19

My daughter's results

Total iga 36 (no range given)

TTGAB-iga 16( high) >or = 4 antibodies detected

Gliadin iga 4 (normal) <20 antibodies

Thank you so much for your time!
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#2 mushroom

 
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Posted 02 March 2013 - 12:21 PM

I would say your doctor did not know very much about celiac disease :rolleyes:  or how to interpret results :( This much I do know:

 

Your results:  You do not make normal quantities of IgA antibodies because your score was below the normal range for your age.  Therefore any IgA testing is not going to be valid for you.  Hence, your IgA antigliadin showed up as being normal, but this is not a trustworthy result.  Your IgG antigliadin, however, was flagged as high (in the positive range).  They did not run the tTG IgA or IgG test for you.

 

Your daughter's results:  They do not give the range for total IgA for your daughter, so there is no way of knowing if she is within range or a low producer like yourself.  Children's results are typically much lower because they haven't had the time to develop a lot of antibodies so she could well be normal.  Her antigliadin IgA result, if she is a normal producer, is negative; however, her tTG IgA is positive with under 4 being a negative score and her score is 16.

 

Based on what you have told me I think it is most likely that you both do have celiac disease.  People who have celiac disease often tend to be low total IgA producers such as yourself.  I wonder how many samples your doctor took from the biopsy because if he did not take enough it is quite possible to miss celiac disease in its early stages because it is not uniform in its distribution.  And sometimes the pathology interpretation will show early signs of celiac but not enough for the official diagnosis.  Childbirth is often a trigger for celiac disease also, and this could have put you into fullblown celiac.

 

I would hope you can get copies of all your test results.  We would be happy to look at them for you.  It is always a good idea to get copies of test results and keep your own file :)

 

I would also hope that your daughter's GI will run a full celiac panel on her

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

before he does the scope.

 

Welcome to the board, and please feel free to ask any questions you may have.  There is a lot of information about celiac disease on here (incidentally, it is called celiac, not celiacs :)  - if you're going to have something you should know how to pronounce it ^_^ ), starting with Newbie Info 101 in the coping section which I would highly recommend to you, although most of this stuff you will already know having been eating gluten free to the best of your ability.


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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 Rubyloo

 
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Posted 02 March 2013 - 01:50 PM

Mushroom- Thank you for your reply and all the info. I guess I do have a lot to learn, starting with the correct pronunciation of the disease!

I agree that my doctors didn't seem to know much about celiac. I got copies of my results and there were four biopsies taken- not sure if that is sufficient. Most disappointing is that the doctor that did my biopsies wrote that he recommended a follow up at the GI clinic, but I was never informed of that.

Thanks for the list of blood test my daughter should get. I am hopeful that I found a good pediatric GI, that will be much more thorough than mine was. At least I am more informed now and know what to ask for.

I'm wondering if my daughter is officially diagnosed, is it necessary for me to be? I have been gluten-free for almost a year, so it seems testing would be impossible, right? I really don't think I could eat gluten again, the thought of it turns my stomach!
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#4 mushroom

 
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Posted 02 March 2013 - 02:32 PM

Can you tell us what the pathologist said about your biopsy specimens?  That would be interesting.


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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

#5 Rubyloo

 
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Posted 02 March 2013 - 04:28 PM

All the report says is specimen consist of four fragments of tan soft tissues measuring 0.3 x 0.2 x 0.1cm. The small bowel mucosa is within normal limits.
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#6 Takala

 
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Posted 02 March 2013 - 04:35 PM

Just wanted to add, welcome, and don't forget it is a good idea to keep your daughter on gluten during the testing process. 

 

Bummer about your previous experience. 


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#7 GottaSki

 
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Posted 03 March 2013 - 07:10 AM

Mushroom said it all perfectly as usual.

 

Welcome to the forum...hang in there -- I had no clue what Celiac Disease was four short years ago -- four years ago today is in fact the first day I ever heard of Celiac Disease or tTG-IgA -- boy have I learned a lot since then.

 

Read all you can and ask any questions you have...it really does help a tough transition happen much more quickly.

 

PS... Takala is correct -- don't remove gluten from your daughter's diet until all her testing is complete.


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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 :)





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