Low gluten ?

[bkelly79]

My sister tested positive for celiacs and her DR. told her to tell the rest of the family they may want to get tested. So I went in for testing, please see a photo of the test results. My doctor went on to tell me " Your celiac antibodies are borderline elevated. You may have a mild sensitivity to gluten, and may benefit from a low gluten diet (I would not recommend a gluten free diet unless you are having a lot of symptoms). If you continue to have problems with IBS symptoms, you may benefit from seeing a gastroenterology specialist for more testing. "   Something dosnt seem right to me about this , anyone with any clues as to why my GP would tell me to go low gluten? When I asked what low gluten was he said, " Basically avoiding eating too much wheat, rye or barley containing foods. " 

 

Gliadin Peptide Ab IgG   my results

2 Units      out of

<20 Units

 

Gliadin Peptide Ab IgA

27 Units

<20 Units

 

tTG IgA Ab

4 U/mL

<4 U/mL

 

tTG-IgG Ab

5 U/mL

<6 U/mL

 

Immunoglobulin A

364 mg/dL

81 - 463 mg/dL

 

Endomysial IgA

NEGATIVE

NEGATIVE

   

 

 

 

 

gluten test.docx

[ravenwoodglass]

It would be a good idea to ask for a referral to the GI doctor since you did have a positive test result. You don't need to have all tests positive to be celiac. Keep eating gluten until after you see the GI doctor.

[TexasJen]

I agree with ravenwood. The likely reason your doctor gave you that ridiculous answer is because he probably doesn't understand Celiac very well. You either have celiac or you don't. (and you can't just be a little pregnant either  )

I agree with talking to a GI specialist.  See if you need a biopsy to confirm celiac before starting a "low gluten diet". There is no such thing as "Celiac light". Everyone is recommended to follow a strict gluten free diet whether their antibodies are 27 or >250

Good luck!

 

[bkelly79]

15 hours ago, ravenwoodglass said:

It would be a good idea to ask for a referral to the GI doctor since you did have a positive test result. You don't need to have all tests positive to be celiac. Keep eating gluten until after you see the GI doctor.

Lovely... When I saw the high antibodies test it just didnt make sense to me that he didn't refer me right away. Thanks for the responce!

[bkelly79]

11 hours ago, TexasJen said:

I agree with ravenwood. The likely reason your doctor gave you that ridiculous answer is because he probably doesn't understand Celiac very well. You either have celiac or you don't. (and you can't just be a little pregnant either  )

I agree with talking to a GI specialist.  See if you need a biopsy to confirm celiac before starting a "low gluten diet". There is no such thing as "Celiac light". Everyone is recommended to follow a strict gluten free diet whether their antibodies are 27 or >250

Good luck!

 

Im still pretty confused what low gluten is haha . Thought I might get off with a hamburger occasionally... From the research ive been doing that could be a bad thing to go undiagnosed and still eat gluten. 

[squirmingitch]

You need to get an official dx. See a good GI versed in celiac & get the endoscopic biopsies. Then if you are positive, pretty sure you will be, your kids will need regular testing every 2 or 3 years.

[ravenwoodglass]

4 hours ago, bkelly79 said:

Im still pretty confused what low gluten is haha . Thought I might get off with a hamburger occasionally... From the research ive been doing that could be a bad thing to go undiagnosed and still eat gluten. 

Yes it could be a very bad thing. It could lead to a life of pain, more AI diseases, and even an early death.  Chances are good that after a bit strictly gluten free a bit of gluten accidentally will have you body show you how bad of an idea it is.  You can still eat a hamburger it just has to be gluten free. Thankfully gluten free baked goods have improved greatly.  Keep eating those gluten foods until all your testing is done. A slice or two of bread or the equivelent is enough.

[bkelly79]

1 hour ago, ravenwoodglass said:

Yes it could be a very bad thing. It could lead to a life of pain, more AI diseases, and even an early death.  Chances are good that after a bit strictly gluten free a bit of gluten accidentally will have you body show you how bad of an idea it is.  You can still eat a hamburger it just has to be gluten free. Thankfully gluten free baked goods have improved greatly.  Keep eating those gluten foods until all your testing is done. A slice or two of bread or the equivelent is enough.

Yep still eating gluten I can tell however that it is or seems to be making me sick . I went gluten free for about a week and wow the change. It was such a change that I dont want to eat gluten again  . However, I know it will mess with the test results if I dont eat it. Thanks!

[bkelly79]

6 hours ago, squirmingitch said:

You need to get an official dx. See a good GI versed in celiac & get the endoscopic biopsies. Then if you are positive, pretty sure you will be, your kids will need regular testing every 2 or 3 years.

I agree . I have emailed my GP and asked him if he could refer me to a good GI doc one who also knew about Celiacs. So hoping he will send me that way and I get a good GI doctor. My mom is currently getting tested as well. She should be getting her test results any day. Good to know about the kids needing to be tested every so often hopefully my insurance doesn't have a fit. Thanks! 

[bkelly79]

Got an appointment for a GI doctor but wont be until Sept.  Its only a consultation.  So might have a diagnosis by the end of the year haha ....

[Felix Nuts Tomcat]

I know from experience low gluten is a very bad idea.  I have been gluten free for six years.  When I am exposed to gluten I get gas, bloating and pin prick bleeding under the skin.  Even small amounts of gluten make me sick.  People that do not deal with celiac disease or gluten allergies do not understand that even small amounts of gluten can lead to illness.

[Lyss]

Eating low gluten is worse than doing no gluten.  If you have antibodies I would highly suggest looking into the Paleo diet or go strictly grain free. Doing low gluten can make symptoms worse. I hope  you get it figured out! 

[bkelly79]

On 8/4/2017 at 6:30 PM, Felix Nuts Tomcat said:

I know from experience low gluten is a very bad idea.  I have been gluten free for six years.  When I am exposed to gluten I get gas, bloating and pin prick bleeding under the skin.  Even small amounts of gluten make me sick.  People that do not deal with celiac disease or gluten allergies do not understand that even small amounts of gluten can lead to illness.

Yeah I agree. After doing a ton of research in Celiacs im amazed ny doctor told me to do this. Im hopeing the GI doc will be better. However from what im reading from reputable source's my tests are positive and the fact my sister was diagnosed with it says its Celiacs.  Hopefully no major damage to my intestine have occurred. 

[bkelly79]

On 8/5/2017 at 0:49 PM, Lyss said:

Eating low gluten is worse than doing no gluten.  If you have antibodies I would highly suggest looking into the Paleo diet or go strictly grain free. Doing low gluten can make symptoms worse. I hope  you get it figured out! 

Will see what the GI doc says. I can defo tell a difference when I eat it and when I dont. I think it would be pretty rare to test positve to gliaden and not have it. Unfortunately im stuck eating it for now. Ive started to adapt some of my recipes already. Made gluten-free biscuits and gravy . It turned out pretty good. 

[Lyss]

6 hours ago, bkelly79 said:

Will see what the GI doc says. I can defo tell a difference when I eat it and when I dont. I think it would be pretty rare to test positve to gliaden and not have it. Unfortunately im stuck eating it for now. Ive started to adapt some of my recipes already. Made gluten-free biscuits and gravy . It turned out pretty good. 

I hope you get it figured out! If you need any recipe suggestions...let me know. I love baking and I was sad to think I could never enjoy baking again. But, I've adapted and enjoy it even more. I love telling people that they're eating grain-free foods that taste so delicious that they're never able to tell.  

[bkelly79]

14 hours ago, Lyss said:

I hope you get it figured out! If you need any recipe suggestions...let me know. I love baking and I was sad to think I could never enjoy baking again. But, I've adapted and enjoy it even more. I love telling people that they're eating grain-free foods that taste so delicious that they're never able to tell.  

Thanks! I just might do that

[bkelly79]

GI appointment update. Doc thinks my blood work is a false positive however is doing all tests and a few more thinks maybe it's IBS... He's doing a genetic test as well. Fecal and culture. Looking for inflammation markers. Wants to do both endoscopy and a colonoscopy.  He dismissed my Gliaden antibody test as a test they dont do anymore and he's not sure why my doc ordered it... He said the transglutymase test was slightly positive however my endmysial was negative. He said people with Celiacs have very high numbers like in the hundreds. Still sounds like hes going to do all the testing for it however im a bit dumbfounded by his explanation.  I'll go next month for biospy. 

[ravenwoodglass]

30 minutes ago, bkelly79 said:

GI appointment update. Doc thinks my blood work is a false positive however is doing all tests and a few more thinks maybe it's IBS... He's doing a genetic test as well. Fecal and culture. Looking for inflammation markers. Wants to do both endoscopy and a colonoscopy.  He dismissed my Gliaden antibody test as a test they dont do anymore and he's not sure why my doc ordered it... He said the transglutymase test was slightly positive however my endmysial was negative. He said people with Celiacs have very high numbers like in the hundreds. Still sounds like hes going to do all the testing for it however im a bit dumbfounded by his explanation.  I'll go next month for biospy. 

This does not sound like a doctor that knows much about celiac.  If he does end up labeling you with 'IBS' please do get a second opinion from a doctor in a different practice.

[cyclinglady]

I agree with Ravenwoodglass!  I would be concerned that he would not do the appropriate number of tissue samples, based on his comments.  I was never in the 100's on my celiac panel when I was diagnosed.  In fact, ONLY my DGP IgA has ever been positive when I was initially diagnosed and  in many follow-up panels.  Even my EMA is ÀLWAYS negative.  Yet my biopsies reveal moderate to severe intestinal damage.  There is a reason there is a panel -- celiac disease is not "one-size fits all".  

You have a sibling with celiac disease!  Good grief.  

If your insurance allows, find another GI.  In my non-medical opinion, IBS stands for "I Be Stumped".   Do not settle!  Keep eating gluten until all testing is complete.  I hope it works out for your Mom.  

 

[bkelly79]

47 minutes ago, ravenwoodglass said:

This does not sound like a doctor that knows much about celiac.  If he does end up labeling you with 'IBS' please do get a second opinion from a doctor in a different practice.

I agree. Oh and I will . I really think he needs to update his education on it.

[bkelly79]

42 minutes ago, cyclinglady said:

I agree with Ravenwoodglass!  I would be concerned that he would not do the appropriate number of tissue samples, based on his comments.  I was never in the 100's on my celiac panel when I was diagnosed.  In fact, ONLY my DGP IgA has ever been positive when I was initially diagnosed and  in many follow-up panels.  Even my EMA is ÀLWAYS negative.  Yet my biopsies reveal moderate to severe intestinal damage.  There is a reason there is a panel -- celiac disease is not "one-size fits all".  

You have a sibling with celiac disease!  Good grief.  

If your insurance allows, find another GI.  In my non-medical opinion, IBS stands for "I Be Stumped".   Do not settle!  Keep eating gluten until all testing is complete.  I hope it works out for your Mom.  

 

I think I found another doctor however I'll switch to him if I have issues. I'm not even sure if my insurance will cover the colonoscopy because  I'm under 50 . I plan to call them soon to find out. Ill be sure to ask him how many biopsies he plans to take. Like I told him , either I have it or I dont . I do know gluten is causing me issues so there's defliently somthing going on. 

[Awol cast iron stomach]

"If your insurance allows, find another GI.  In my non-medical opinion, IBS stands for "I Be Stumped".   "

Yes 

please follow your gut and ravenswood and cycling lady suggestion. Good luck with the consult and hopefully swift and shenniganless diagnosis.

I spent over 20 years IBS- vigoursly shakes head if I was only diagnosed 20 years earlier or dare I say 38 years before ... 

best wishes  b Kelly

 

[bkelly79]

Got my DNA test back im not carrying the HLA-DQ variants. So the plot thickens... 

[bkelly79]

Heres the full testing. I don't understand all of this so im doing research on it. Any input from the group would be great. Yes I do understand that this is not a diagnostic tool per say for Celiacs just trying to understand the genetics and my test. The doc is still going to do the Endoscopy. 

[cyclinglady]

Did the GI order this genetic test?