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How Exactly To Word The Celiac Tests On Lab Slip?


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12 replies to this topic

#1 MotoMommy

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Posted 17 October 2011 - 01:03 PM

Hello!

I'm new to the forum. I'm 46 and have so many of the symptoms of Celiac disease. I've been to tons of different specialty doctors for each different problem. Finally a Family Practice doctor mentioned that she suspects Celiac Disease. She referred me to a Gastroenterologist who seems pretty old school. He diagnosed me with IBS and said all my other problems should be addressed with each specialty doctor. (Um...I've already been doing that over the past 20 years!)

When I mentioned that I was referred to him specifically for Celiac, he seemed anti-Celiac! I finally convinced him to add Celiac testing to my blood test I was going to have. Results came in and I see he only ordered the total Serum IgA and none of the other tests! I'm a cash pay patient and have spent so much money already and I still didn't get the proper tests done. I don't want to go back to him.

Anyway, my husband's friend is a Family Practice doctor (doesn't specialize in Celiac) but he said he would sign a new lab slip for me to go get another blood test. He said he'd write up whatever tests I wanted and for me to just tell him what I wanted. I notice that there are many different names for tests that are actually the same. How EXACTLY should I word the 5 or so different tests that I want?

Thank you in advance! My plan is to go get another blood test, then depending on the result I will take it to another doctor.

Sincerely,
Sonja
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#2 mushroom

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Posted 17 October 2011 - 01:33 PM

Hi Sonja, and welcome. I am sorry you are being dithered around by the medical professionals. I assume that the total serum IgA test was within the normal range. If so, that means that the IgA versions of all the celiac tests will give accurate antibody readings. The tests you are looking for are:

Anti-Gliadin (AGA) IgA
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA

Good luck on your testing :)
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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

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#3 Roda

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Posted 18 October 2011 - 09:29 AM

You also need to have on your lab slip an order for a total IgA. This will validate the other IgA tests. If you are found to be IgA deficient then the IgA test results will be useless. If that happens then ask for the IgG versions of the tests mushroom mentioned. Or have him include them on the origial lab slip and get all of them done at one time.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#4 MotoMommy

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Posted 18 October 2011 - 07:41 PM

Thank you so much for this information. This is just what I needed. :)
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#5 MotoMommy

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Posted 18 October 2011 - 07:48 PM

Hello Roda,

Thank you for your response! Well, the one test he did order was the "Serum IgA". On the test results it says "Immunoglobulin A". That one was negative. Is this the same as the Total IgA you mentioned?

Thanks again,
Sonja
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#6 mushroom

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Posted 19 October 2011 - 12:55 AM

It is hard to answer your question. Can you post the results of the test you had and the range the lab used, because with the total serum IgA, if your results are lower than the lab reference range then it means that you are not a normal IgA producer. If the test was an AGA IgA and the test results fell within a normal range then it means that you are probably producing a normal amount of antigliadin IgA. If it was a total serum IgA, not so if it was below normal. So, again, if the only test he ordered was the total serum IgA, and that was below normal, the IgA versions of any other tests would not be valid for you, and your doctor would have to order the IgG versions of the tests I set forth above to get a diagnosis.

It is a very confusing thing, but if you don't produce normal IgA antibodies then no tests which measure IgA antibodies are accurate. If you produce normal amounts of IgA then the tests would be considered accurate by the medical profession, but may not reflect whether or not you are gluten intolerant, since the tests they are administering are testing only for celiac disease specifically, and not for gluten intolerance which exists independent of celiac disease. But disregarding the last statement, you are trying to get a celiac diagnosis and if your tptal serum IgA test was low, then you need different tests from what I stated in my first post. Clear as mud?? Or let me know you understand :)
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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

#7 Di2011

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Posted 19 October 2011 - 03:46 AM

Hello!

I'm new to the forum. I'm 46 and have so many of the symptoms of Celiac disease. I've been to tons of different specialty doctors for each different problem. Finally a Family Practice doctor mentioned that she suspects Celiac Disease. She referred me to a Gastroenterologist who seems pretty old school. He diagnosed me with IBS and said all my other problems should be addressed with each specialty doctor. (Um...I've already been doing that over the past 20 years!)

When I mentioned that I was referred to him specifically for Celiac, he seemed anti-Celiac! I finally convinced him to add Celiac testing to my blood test I was going to have. Results came in and I see he only ordered the total Serum IgA and none of the other tests! I'm a cash pay patient and have spent so much money already and I still didn't get the proper tests done. I don't want to go back to him.

Anyway, my husband's friend is a Family Practice doctor (doesn't specialize in Celiac) but he said he would sign a new lab slip for me to go get another blood test. He said he'd write up whatever tests I wanted and for me to just tell him what I wanted. I notice that there are many different names for tests that are actually the same. How EXACTLY should I word the 5 or so different tests that I want?

Thank you in advance! My plan is to go get another blood test, then depending on the result I will take it to another doctor.

Sincerely,
Sonja


Hi Sonja,
I can't help with technicalities but I can tell you that this forum may help you with some of the many subtle and unexpected "symptoms" of Celiac/gluten intolerance so make sure you have a good search around on the forum. Ask random or obvious questions or whatever takes your fancy. The members will soon tell you if you need to calm down or take it seriously. Its what I like a about it the most.

Why did you suspect Celiac for so long?
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#8 MotoMommy

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Posted 19 October 2011 - 10:48 AM

Hello "Mushroom", :)

Doctor wrote "Serum IgA" on the lab order. I had the test done. On the results, the name of the test just says "Immunoglobulin A".

The result to that one test is 194. The range is [63-498 mg.dL].

So I take it I should now have the tests you listed above done. I hope I got it right! :)

Thanks again.
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#9 MotoMommy

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Posted 19 October 2011 - 11:10 AM

Ooops, I wrote a whole long paper on my symptoms and it dissapeared! Well, I'll see if it ends up posting. If it posts, then I'll finish it up. ~Sonja
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#10 mushroom

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Posted 19 October 2011 - 11:12 AM

Hello "Mushroom", :)

Doctor wrote "Serum IgA" on the lab order. I had the test done. On the results, the name of the test just says "Immunoglobulin A".

The result to that one test is 194. The range is [63-498 mg.dL].

So I take it I should now have the tests you listed above done. I hope I got it right! :)

Thanks again.

Yes, MotoMommy, you got that right :)
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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

#11 MotoMommy

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Posted 19 October 2011 - 04:53 PM

Hello Mushroom!

I have another question for you. It turns out the doctor did order "Tissue Transglutam IgA". The result just came back from that...it took longer than the other test. The test was negative. I scored 6.1 and the range was [0.0-19.9].

Should I still get the other 3 tests you've mentioned?

Thanks again!
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#12 psawyer

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Posted 19 October 2011 - 05:19 PM

Should I still get the other 3 tests you've mentioned?

that would certainly be my advice to you.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#13 MotoMommy

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Posted 20 October 2011 - 08:46 PM

Thank you! I just had my blood drawn again today and all the tests mentioned above are being tested for. Quest Diagnostics is running the tests.

Oh, I hope and pray for an answer to all of this. It's been such a long road! Celiac would make sense and wrap all my many ailments into one cause. Well thanks to all of you again.

Sonja
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