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CouldIbeCeliac

Can I trust this doctor?

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Hello everyone.

I am 17 years old and very frustrated here. I was almost certain I had celiac; I have all the GI symptoms, plus being underweight, pale, Vit D and calcium deficient, tired all the time, have cold hands and feet and tingling as well as being generally very anxious etc. I am also HLAQ2.5 positive. 

I had a TTG IGA blood test done and it was negative (my total IGA serum was also normal) and I was consuming plenty of gluten at the time.

I went back to the doctor to ask if there were more tests to be done. I suggested the EMA test, the anti gliadins etc. but he told me the only one that was approved and on the lab was the TTG IGA, and he hadn't even heard of the EMA test. He told me I have IBS and said he was 99.9% sure I did not have celiac. He told me to try peppermint tea: I have been referred to the GI in the next couple of months but he said I should trial a gluten free diet for 4 weeks beforehand. 

Should I trust the doctor? My grandfather was supposedly diagnosed with IBS (they never checked for celiac) and my mum has always had digestive issues/ migraines too. 

Thanks for your advice: I'm so frustrated.

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21 minutes ago, CouldIbeCeliac said:

Hello everyone.

I am 17 years old and very frustrated here. I was almost certain I had celiac; I have all the GI symptoms, plus being underweight, pale, Vit D and calcium deficient, tired all the time, have cold hands and feet and tingling as well as being generally very anxious etc. I am also HLAQ2.5 positive. 

I had a TTG IGA blood test done and it was negative (my total IGA serum was also normal) and I was consuming plenty of gluten at the time.

I went back to the doctor to ask if there were more tests to be done. I suggested the EMA test, the anti gliadins etc. but he told me the only one that was approved and on the lab was the TTG IGA, and he hadn't even heard of the EMA test. He told me I have IBS and said he was 99.9% sure I did not have celiac. He told me to try peppermint tea: I have been referred to the GI in the next couple of months but he said I should trial a gluten free diet for 4 weeks beforehand. 

Should I trust the doctor? My grandfather was supposedly diagnosed with IBS (they never checked for celiac) and my mum has always had digestive issues/ migraines too. 

Thanks for your advice: I'm so frustrated.

If you want to continue looking at Celiac as a problem, keep eating gluten.  I don't know why a doctor would tell someone to go gluten-free, if they don't have Celiac or a FODMAP issue!

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I agree. Keep eating gluten. But don’t let Dr Internet diagnose you. Keep an open mind. It might be celiac... but then again it might not be. Might be vitamin deficiencies. Might be you are not taking in the right form of B12 or need folate instead of folic acid. Might be your diet includes something else you are allergic to or sensitive to. Have a frank open minded talk with the GI doctor but keep eating gluten... but also try to decrease processed foods and increase simple Whole Foods. See what sits well with you. Your primary care doctor can check your vitamin levels and see if they are ok... if they aren’t, you can work on improving them and see if things improve. 

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You need to be eating gluten for the tests to be accurate.  So don't stop eating it before all testing is done.

There are members on the forum who test positive on just one of the antibody tests.  So you might test positive if they would give you the complete celiac panel, but it sounds like they won't.

Many doctors don't seem to understand the basics of celiac disease and give poor advice about testing, judging from the multiple stories on this forum.

There is a topic called Newbie 101 stickied at the top of the Coping With forum section.  Check there for more info.

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30 minutes ago, rehh05 said:

It might be celiac... but then again it might not be. Might be vitamin deficiencies.

Multiple vitamin deficiencies are one of the symptoms of of Celiac. If you have celiac disease you are vitamin and mineral deficient. Vitamin supplements may improve your symptoms

 

1 hour ago, kareng said:

I am 17 years old and very frustrated here. I was almost certain I had celiac; I have all the GI symptoms, plus being underweight, pale, Vit D and calcium deficient, tired all the time, have cold hands and feet and tingling as well as being generally very anxious etc.

Sounds like me 50 years ago. Although I was always told that there is nothing wrong with me, four years ago I bit the bullet and mourned the loss of my best friends, pizza and donuts, and my health has steadily improved, including all those symptoms you have listed and at least 10 other. Don't suffer for 50 more years before accepting the fact that, despite the massive advertising that wheat is essential, it is not good for you. 

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Your doctor’s group/provider and or insurance might not allow primary care physicians (General practitioners) to order anything but the TTG for screening.  It is a cost reduction measurement.  The TTG does catch most celiacs, but not all.   In that case, you will have to wait to see the GI who most likely can order the rest of the celiac panel unless you can order lab tests in your country and pay cash.    I assume you are probably not from The US because you said “MUM”.  

I am one of the odd ducks who only tests positive to the DGP IgA, even in repeat tests, yet my biopsy revealed small intestinal damage.  Some celiacs are even seronegative.  

You might NOT have celiac disease.  Please have your GI doctor check for things like Crohn’s.  I thought for sure my 19 year old niece had Celiac Disease but it turns out she has Crohn’s.  So see your GI but have an open mind.  Symptoms can often overlap, so you just can go based on symptoms.  I did not even have any classic celiac disease GI symptoms, but was anemic.  

Do not go gluten free until your GI has completed all testing.  All celiac testing requires you to be on a gluten diet.  

Keep advocating for your health!  😊

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