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Testing Question


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#31 IrishHeart

 
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Posted 23 June 2012 - 04:56 AM

Help! What does my test results mean. My doctor said everything is negative.
ENDOMYSIAL ANTIBODY IGA Negative Negative
T-TRANSGLUTAMINASE (TTG) IGA <2 0 - 3 U/mL
T-TRANSGLUTAMINASE (TTG) IGG <2 0 - 5 U/mL
IMMUNOGLOBULIN A, QN, SERUM 261 70 - 400 mg/dL

All my other autoimmune and inflammation tests were negative too.
I'm still trying gluten free to see if my pain and lethargy goes away.



As I have explained, tests can be negative and you can still have a gluten sensitivity and it can cause all the problems and pain you are having.

My blood work for celiac was negative too, but I still have celiac and I suffered major consequences going by "test results".

The best way to know is by symptom relief.

Go gluten-free and see how you feel.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


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#32 ker0pi

 
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Posted 23 June 2012 - 07:16 AM

As I have explained, tests can be negative and you can still have a gluten sensitivity and it can cause all the problems and pain you are having.

My blood work for celiac was negative too, but I still have celiac and I suffered major consequences going by "test results".

The best way to know is by symptom relief.

Go gluten-free and see how you feel.


My hubby and I discussed it last night and we are both on board with a gluten-free diet, he threw all the gluten containing foods out the day I had my blood drawn. I see too much reduction in my pain even now after a few days gluten-free not to believe it is the problem. I emailed my doctor and told him I'm going to go gluten-free for some time and that after 3 months I will let him know how I'm doing, that I do not want a referral for a Rheumatoid specialist right now. Thank you for the continued support. I understand the results to mean that I have the antibody present in my blood work with the last score being 261, I know it says normal range is 0-400 but it just doesn't seem normal for your body to make anti body to something unless it is very unhappy about it.
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#33 IrishHeart

 
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Posted 23 June 2012 - 10:57 AM

My hubby and I discussed it last night and we are both on board with a gluten-free diet, he threw all the gluten containing foods out the day I had my blood drawn. I see too much reduction in my pain even now after a few days gluten-free not to believe it is the problem. I emailed my doctor and told him I'm going to go gluten-free for some time and that after 3 months I will let him know how I'm doing, that I do not want a referral for a Rheumatoid specialist right now. Thank you for the continued support. I understand the results to mean that I have the antibody present in my blood work with the last score being 261, I know it says normal range is 0-400 but it just doesn't seem normal for your body to make anti body to something unless it is very unhappy about it.


I agree! And yes, I think your positive response to being gluten-free speaks volumes! :) Keep us posted!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#34 frieze

 
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Posted 23 June 2012 - 05:40 PM

My hubby and I discussed it last night and we are both on board with a gluten-free diet, he threw all the gluten containing foods out the day I had my blood drawn. I see too much reduction in my pain even now after a few days gluten-free not to believe it is the problem. I emailed my doctor and told him I'm going to go gluten-free for some time and that after 3 months I will let him know how I'm doing, that I do not want a referral for a Rheumatoid specialist right now. Thank you for the continued support. I understand the results to mean that I have the antibody present in my blood work with the last score being 261, I know it says normal range is 0-400 but it just doesn't seem normal for your body to make anti body to something unless it is very unhappy about it.

that 261 is your TOTAL IgA, not the gliadin one....I am thinking you might be at least on DQ1...with the neuro issues, and it is not unusual that they test -. The diet is the true test. good luck
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#35 ker0pi

 
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Posted 24 June 2012 - 10:47 AM

that 261 is your TOTAL IgA, not the gliadin one....I am thinking you might be at least on DQ1...with the neuro issues, and it is not unusual that they test -. The diet is the true test. good luck


Could you explain further please. I do not understand the test results at all and my Doctor explained nothing. He just said, you negative no autoimmune. I was tested for RHEUMATOID FACTOR, QUNT, HLA B 27 DISEASE ASSOCIATION,RBC SED RATE, AUTOMATED and ANTINUCLEAR ANTIBODIES. The only tests that registered anything was the celiac panel, the Rhumatiod Factor which was 8.7, and the Sed rate which was 6 - all were considered with in normal range. Thank you for any explanations you can give.
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#36 IrishHeart

 
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Posted 24 June 2012 - 11:30 AM

You had all the same testing I had done.

Total serum IgA is to test for IgA deficiency, which is a health condition
that can affect the accuracy of antibody tests. Your number indicates you are NOT deficient, within normal range and therefore, your testing results are likely accurate.


HLA-B27 is the gene test associated with ankylosing spondyloarthropy. Believe me, you are glad you do not have that disease.

SED rate, ANA etc. all indicate the level of inflammation in your body
and whether you have autoimmune diseases. They are NEG, which indicates no rheumatoid arthritis, lupus or other extremely debilitating diseases.

The ANA is most often used as one of the tests to diagnose systemic lupus erythematosus (SLE). Depending on the person's symptoms and the suspected diagnosis, ANA may be ordered along with one or more other autoantibody tests. Other laboratory tests associated with presence of inflammation, such as erythrocyte sedimentation rate (ESR) and/or C-reactive protein (CRP), may also be ordered. ANA may be followed by additional tests that are considered subsets of the general ANA test and that are used in conjunction with the person's clinical history to help rule out a diagnosis of other autoimmune disorders.

What does all this mean?

This is all good news, yet you are still in a quandry over what it is causing such muscle and joint pain and weakness.

However, you KNOW it can resolve off gluten, so this is the best course of action for you now. Can gluten cause all this pain and still show you to be negative on all testing?

YES!!

There are so many people in the same boat. A negative celiac panel, negative for rheumatoid factors, yet suffering from horrid symptoms. Non-celiac gluten intolerance causes symptoms just as painful as celiac disease.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#37 ker0pi

 
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Posted 25 June 2012 - 07:37 AM

Thank You for clarifying. I appreciate all the help.
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#38 IrishHeart

 
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Posted 25 June 2012 - 11:56 AM

Thank You for clarifying. I appreciate all the help.



You're welcome, hon.

The hardest part of this is....you COULD be a celiac, but he would have to biopsy you to find out and some docs will not recommend that in the case of a negative celiac panel.

If you really want to press it, ask for a GI consult, eat lots of gluteny foods and have the biopsy done.

Even then, if there is no villous atrophy (YET) and they declare you non-celiac, where does that leave you?

Still in pain. :(

Here is what I know. If your debilitating pain and "fibromyalgia" is gluten-related and you go OFF gluten and you feel better, then that is all that really matters.

Keep us posted!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#39 ker0pi

 
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Posted 28 June 2012 - 11:55 AM

I just wanted to update you, I am now on day 9 of my gluten-free diet and I feel AMAZING!! I do not care what my blood work showed my doctor, my gluten-free diet has PROVEN to me and my family that gluten is the cause of my issues. My weird gait when I walked is GONE!! I have been battling my own body while walking for 4 years and it is just GONE. I wake up in the morning and I can stand up with out my calves cramping into solid charlie horses that I have to massage and stretch before I can get my foot flat on the floor. I have energy!! I was wide awake at 10:30 last night and husband asked "What are you doing awake?" I was wired it was AWESOME. I went to my monthly Vestry meeting last night and everyone asked what I had been doing because I looked great, skin glowing, and just full of light. I told them I am gluten-free now. I cannot wait until I've made it 30 days to see how I feel. My ultimate dream and goal is to run again, I was a track runner when I was younger and love nothing more than to just run at full speed, heart racing, feet pounding the ground. I know it is going to be quite some time before I am strong enough to do that and I will take it very slow going back to my exercise routine but the hope that I can feel this good again long term is a miracle.
Thank You for this website, thank you for the support you offer and the amazing and vast amount of information you make available.
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#40 IrishHeart

 
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Posted 28 June 2012 - 12:10 PM

WHOOHOO! This is the very best news I have heard all day! :)

I told you on email that I suspected gluten was causing this pain.

I cannot tell you how thrilled I am for you because I KNOW what it is like to be debilitated and I could just feel your anguish when we talked.

You will regain your muscles and your strength and I hope you will keep us posted on your progress.

WE LOVE success stories!!!!
I am so happy for you, I have tears in my eyes.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#41 pain*in*my*gut

 
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Posted 28 June 2012 - 04:17 PM

Help! What does my test results mean. My doctor said everything is negative.
ENDOMYSIAL ANTIBODY IGA Negative Negative
T-TRANSGLUTAMINASE (TTG) IGA <2 0 - 3 U/mL
T-TRANSGLUTAMINASE (TTG) IGG <2 0 - 5 U/mL
IMMUNOGLOBULIN A, QN, SERUM 261 70 - 400 mg/dL

All my other autoimmune and inflammation tests were negative too.
I'm still trying gluten free to see if my pain and lethargy goes away.


Ummm, that is NOT a complete celiac panel! There are no anti-gliadin antibody tests or, more importantly, there is no DGP, which is very specific for celiac and is often positive before anything else is. What you had done is really only half of a celiac panel.

Regardless, you are off gluten and feeling better, so that's the most important thing! Congrats!
  • 0
Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

#42 IrishHeart

 
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Posted 07 July 2012 - 10:07 AM

Ummm, that is NOT a complete celiac panel! There are no anti-gliadin antibody tests or, more importantly, there is no DGP, which is very specific for celiac and is often positive before anything else is. What you had done is really only half of a celiac panel.

Regardless, you are off gluten and feeling better, so that's the most important thing! Congrats!


I just saw this, sorry, but I wanted to add:
I think she may have just forgotten to post the complete results. I told her all the tests she needed done including DGP and Antigliadin antibodies and she brought that list to the doctor and the lab tech verified them all with her and him ---while she was in the lab.
So, hopefully, they were all done.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#43 roxieb73

 
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Posted 07 July 2012 - 04:59 PM

I just wanted to update you, I am now on day 9 of my gluten-free diet and I feel AMAZING!! I do not care what my blood work showed my doctor, my gluten-free diet has PROVEN to me and my family that gluten is the cause of my issues. My weird gait when I walked is GONE!! I have been battling my own body while walking for 4 years and it is just GONE. I wake up in the morning and I can stand up with out my calves cramping into solid charlie horses that I have to massage and stretch before I can get my foot flat on the floor. I have energy!! I was wide awake at 10:30 last night and husband asked "What are you doing awake?" I was wired it was AWESOME. I went to my monthly Vestry meeting last night and everyone asked what I had been doing because I looked great, skin glowing, and just full of light. I told them I am gluten-free now. I cannot wait until I've made it 30 days to see how I feel. My ultimate dream and goal is to run again, I was a track runner when I was younger and love nothing more than to just run at full speed, heart racing, feet pounding the ground. I know it is going to be quite some time before I am strong enough to do that and I will take it very slow going back to my exercise routine but the hope that I can feel this good again long term is a miracle.
Thank You for this website, thank you for the support you offer and the amazing and vast amount of information you make available.



Woo Hoo soooo happy for you! That is awesome! Sounds very similar to me. My little brother asked me at the 4th of July if I was on speed. lol I asked why he just said I have so much energy and he hasn't seen me like that in forever. I have been gluten free almost 3 weeks and start PT to rebuild muscles I am already starting to walk better, more energy, and I have lost 10lbs!!!!!!!!! OMG Thank you God for letting me find this site and not just take a negative blood test for an answer!
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GI confirmed Celiac 08/2012
Double DQ1 subtypes(5,6)
Severe Vit D defiency
Iron Defiency Anemia
Gluten Free and on my way back to good health

#44 roxieb73

 
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Posted 07 July 2012 - 05:11 PM

Also wanted to share this little thought....... I wrote to Dr. Vikki Peterson author of "The Gluten Effect" and told her my situation. This was part of what she told me.

"Also noteworthy is eliminating gluten and feeling better - do realize that that in itself is a positive test for gluten sensitivity"

http://www.celiac.co...rsen-D.C,-C.C.N

Since you feel better just know you are on the right track! ;)
  • 0
GI confirmed Celiac 08/2012
Double DQ1 subtypes(5,6)
Severe Vit D defiency
Iron Defiency Anemia
Gluten Free and on my way back to good health

#45 Razzle Dazzle Brazell

 
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Posted 07 July 2012 - 05:26 PM

Woo Hoo soooo happy for you! That is awesome! Sounds very similar to me. My little brother asked me at the 4th of July if I was on speed. lol I asked why he just said I have so much energy and he hasn't seen me like that in forever. I have been gluten free almost 3 weeks and start PT to rebuild muscles I am already starting to walk better, more energy, and I have lost 10lbs!!!!!!!!! OMG Thank you God for letting me find this site and not just take a negative blood test for an answer!


Seeing other peoples results keeps me hopeful too. I love it! I can't wait to enjoy running and swimming again too. On the fourth I was very excited to have made some homemade chili with gluten-free kosher hot dogs. All natural. I cooked it. And didn't feel at all guilty about "my pickiness". It has gotten easier that my family respects my decisions as necessary for my health.

It does feel good not to look pregnant anymore lolz. Still a little bloated but my family can tell the difference too. I don't complain about being tired all the time. Iamnot dragging myself around and moving like an elderly lady.When the storm hit a few days ago, I helped carry the branches from the trees that had fallen on our driveway! After some time I have also figured out my sensitivities: casein, liquids out of plastics (weird I know), and of course the oat allergy.

I sooo enjoy cooking even more now that I know what's in my food and it is fresh and organic. It is worth every penny. I would rather spend pennies on my health than on a doctors and meds the rest of my life. I'm just greedy that way :P
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Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.




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