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Confused

NLoc17

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NLoc17 Newbie
NLoc17
Posted

Hello, 

I'm new to the forum and new to gluten/celiac. I had some abdominal discomfort a couple weeks ago and my doctor (Kaiser) at the last second said he'd also test my blood for gluten issues. Bottom line, last Sunday night i get the results which I didn't quite understand.

TISSUE TRANSGLUTAMINASE IgG 1.06 Index <=0.90 Index
Tissue transglutaminase IgA 0.91 Index <=0.90 Index

Then i get an email from him saying you tested celiac positive, I'm referring you to a dietitian for a gluten free lifestyle (head exploded). After scouring the internet for days, I've read my fair share of good and bad celiac articles. Right now it seems like kaiser just wants me to go gluten-free which is fine if I have celiac disease, but I'm not sure what the numbers indicate or how bad they are, or how much potential damage has been done. Has anyone gone through a similar process? Do I need to ask for further tests? 

I'm still in shock a bit I guess but really feel like I'm in the dark and reading everying on WebMD and other celiac sites gives me hope and crushes my dreams at the same time. By the way I'm 35 and male, if that matters.

 

Thanks

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cyclinglady Grand Master
cyclinglady
Posted

Your doctor is woefully mis-informed.  First of all you did get a positive on both (barely on the TTG IGA).  That does not mean you should be referred to a dietician.  You should be referred to a GI to run either the full celiac blood panel (your GP can not order it at Kaiser) and schedule you for an endoscopy to obtain four to six biopsies to confirm celiac disease which is the GOLD standard level of care.

Read the research here:

Open Original Shared Link

Ask your doctor for a GI referral.  Show them the print out out from the University of Chicago.  Be nice, but they'll do it.  

Also, did your GP run a IGA deficiency test?  Do you have those results?  

Best to email your doctor.  Reqest a GI referral.  Once it is in writing, your doctor has to act.  Let him know that what is required for a proper diagnosis per leading celiac research centers and the American GI Association.

Open Original Shared Link

DO NOT GO GLUTEN FREE UNTIL ALL TESTING IS DONE!  This is so critical.  Otherwise the tests will be invalid.  Then you'll be in diagnostic limboland!  

After your GI consult, you can ask to be tested for vitamin and mineral levels.  Spend time learning about celiac disease and the gluten diet.  Learn about cross contamination and hidden sources of gluten.

Again, DO NOT GO GLUTEN FREE YET!  You can do anything you like, of course, but get the facts first! 

 

 

NLoc17 Newbie
NLoc17
Posted
  • Author
4 minutes ago, cyclinglady said:

Your doctor is woefully mis-informed.  First of all you did get a positive on both (barely on the TTG IGA).  That does not mean you should be referred to a dietician.  You should be referred to a GI to run either the full celiac blood panel (your GP can not order it at Kaiser) and schedule you for an endoscopy to obtain four to six biopsies to confirm celiac disease which is the GOLD standard level of care.

Read the research here:

Open Original Shared Link

Ask your doctor for a GI referral.  Show them the print out out from the University of Chicago.  Be nice, but they'll do it.  

Also, did your GP run a IGA deficiency test?  Do you have those results?  

Best to email your doctor.  Reqest a GI referral.  Once it is in writing, your doctor has to act.  Let him know that what is required for a proper diagnosis per leading celiac research centers and the American GI Association.

Open Original Shared Link

DO NOT GO GLUTEN FREE UNTIL ALL TESTING IS DONE!  This is so critical.  Otherwise the tests will be invalid.  Then you'll be in diagnostic limboland!  

After your GI consult, you can ask to be tested for vitamin and mineral levels.  Spend time learning about celiac disease and the gluten diet.  Learn about cross contamination and hidden sources of gluten.

Again, DO NOT GO GLUTEN FREE YET!  You can do anything you like, of course, but get the facts first! 

 

 

Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.

cyclinglady Grand Master
cyclinglady
Posted
7 minutes ago, NLoc17 said:

Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.

Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.  

Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!  

 

Clay Harris Newbie
Clay Harris
Posted
On 4/29/2016 at 3:01 PM, cyclinglady said:

Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.  

Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!  

 

Nothing big to add, just want to reinforce what @cyclinglady said.  From what I have learned, your GP cannot diagnose celiac.  The best they can do is find indicators (such as the test you got results for) which are really neither definite positives or definite negatives - they're just warning signs, and refer you to a specialist.

See your GI.   They'll be able to give you a real informed opinion so you won't be in limbo.  And as she said, don't cut out the gluten until the GI tells you to - even the GI's tests are indicators that appear as a result of relatively recent gluten intake.

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