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dolly

Need Help With Testing Information Asap (please)

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So, from my previous post many of you may know that I believe that I have Celiac and was looking around for a doctor to test me. Today I met with one of my best friends who is also a chiropractor. My insurance will allow her to order my Celiac blood tests so that I don't have to go to a regular doctor just yet. She wants to help me but I need to find out what the blood tests are called. I know that I have read it somewhere but can't find that information now. She needs me to email her that infor tonight.

Can anyone please point me in the right direction?

Thank you so very much!!!!

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The basic panel includes:

Therefore, in the United States, screening in patients with possible celiac disease should consist of a panel of the following serologic tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

You can give your friend this link---they might be interested http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

The tTG IgG is usually only run if you are "total IgA" deficient.

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dolly,

Just a reminder...continue to eat gluten or your test will not be accurate.

Momma Goose, thanks for the reminder. I did eat some pasta at dinner tonight and within 3 hours started feeling intense bone pain again. Can't wait to get this test over with :angry:

Thanks !

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Momma Goose, thanks for the reminder. I did eat some pasta at dinner tonight and within 3 hours started feeling intense bone pain again. Can't wait to get this test over with :angry:

Thanks !

Dolly, Have you been doing the diet or gluten light? This can cause a false negative on the tests. You need to be actively consuming gluten, at least 3 or 4 slices of bread worth for at least 3 months to have even a slim chance at an accurate blood test, if there really is such a thing. The rate of false negatives even with folks still consuming a full gluten diet is at least 30%, even with those of us that are severely impacted. If you have been gluten free or gluten light the reaction from your consuming a pasta dinner would be a reaction to a gluten challenge, IMHO a more valid form of diagnosis.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Dolly, Have you been doing the diet or gluten light? This can cause a false negative on the tests. You need to be actively consuming gluten, at least 3 or 4 slices of bread worth for at least 3 months to have even a slim chance at an accurate blood test, if there really is such a thing. The rate of false negatives even with folks still consuming a full gluten diet is at least 30%, even with those of us that are severely impacted. If you have been gluten free or gluten light the reaction from your consuming a pasta dinner would be a reaction to a gluten challenge, IMHO a more valid form of diagnosis.

So, from Sunday afternoon until Wednesday afternoon of this week I went gluten free and felt amazing. Then last night (knowing a test is coming) I went back to eating the way that I used to pasta, bread, etc. I feel awful and so depressed today that I can barely move, not to mention the bone pain came right back.

Now here is the question-if I don't get the blood test then what do I do with the doctors? At my next doctors visit do I tell my doctor "oh by the way, I am having a proglem with gluten. I think I have celiac disease, but I haven't take the test becuase I refuse to eat gluten again?" They will look at me like I am nuts. Maybe I am feeling emotional because of the darn gluten today but I just dont' know what I am suppose to do with this whole situation.

Sorry for the emotion. I just feel terrible today.

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So, from Sunday afternoon until Wednesday afternoon of this week I went gluten free and felt amazing. Then last night (knowing a test is coming) I went back to eating the way that I used to pasta, bread, etc. I feel awful and so depressed today that I can barely move, not to mention the bone pain came right back.

Now here is the question-if I don't get the blood test then what do I do with the doctors? At my next doctors visit do I tell my doctor "oh by the way, I am having a proglem with gluten. I think I have celiac disease, but I haven't take the test becuase I refuse to eat gluten again?" They will look at me like I am nuts. Maybe I am feeling emotional because of the darn gluten today but I just dont' know what I am suppose to do with this whole situation.

Sorry for the emotion. I just feel terrible today.

How about at your next scheduled appointment you tell him that you did a gluten challenge and it was positive, you may want to list the symptoms you are having in great detail and then you tell him that you have decided to do the gluten free diet as a result of this positive challenge and dietary response. Then you tell him that the diet has cleared up _______ ________and ______ you fill in the blanks and would he please do a check of your vitamin levels and make sure you get a bone scan if you haven't had one already. What made a real believer out of my doctors was time, and my recovery and remission from scads of gluten related autoimmune stuff. Oh and I never see them any more when I used to need appointments multiple times a month. Going from paying 17 grand in copays a year to less than 500 dollars made a believer out of my DH.

You will most likely have some emotional days as the toxic effects of the gluten leave your system. Many of us suffer a withdrawl and for some of us a glutening will bring on a massive depressive bout for anywhere from a day to a week or so. One of the most telling signs for me and my DS when glutened is the overwhelming nature of everything. It will pass but it may take time.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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How about at your next scheduled appointment you tell him that you did a gluten challenge and it was positive, you may want to list the symptoms you are having in great detail and then you tell him that you have decided to do the gluten free diet as a result of this positive challenge and dietary response. Then you tell him that the diet has cleared up _______ ________and ______ you fill in the blanks and would he please do a check of your vitamin levels and make sure you get a bone scan if you haven't had one already. What made a real believer out of my doctors was time, and my recovery and remission from scads of gluten related autoimmune stuff. Oh and I never see them any more when I used to need appointments multiple times a month. Going from paying 17 grand in copays a year to less than 500 dollars made a believer out of my DH.

You will most likely have some emotional days as the toxic effects of the gluten leave your system. Many of us suffer a withdrawl and for some of us a glutening will bring on a massive depressive bout for anywhere from a day to a week or so. One of the most telling signs for me and my DS when glutened is the overwhelming nature of everything. It will pass but it may take time.

ravenwoodglass,

Interestingly, I started a list the day I stopped eating gluten and continued every day there after. I have had enough experience with doctors to know to document everything but thank you for that advice!!!

Thank you for the heads up about the depression. I can understand that the body must go through massive changes during the detox process. Good to know!!!

BTW- I just posted another question. If you could read it and give some feedback I would greatly appreciate it. It is titled "Hope you don't mind one more question".

You have been just great!! Thank you so much for your help!!

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