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Should I get the celiac blood test now?

Jen1104
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Jen1104 Contributor
Jen1104
Posted

Hey everybody,

This may be a dumb question but I'm gonna ask it anyway.

A little background:

I believe I may have celiac as I've had all kinds of weird and painful symptoms for many years.  I have been gluten free for a year (very strict, follow paleo diet--no grains or dairy) and I rarely eat any of the processed gluten free foods.

A little background:  I had an endoscopy along with a colonoscopy because of stomach issues 6 months ago.  When I started the gluten-free diet 6 mo BEFORE these procedures, I knew nothing about celiac and didn't realize that you had to be eating gluten for tests to be accurate.  After the endoscopy the dr said he could see some flattened villi but the 5 biopsies showed nothing wrong.  Given my very bad reaction to  even crumbs of gluten and the flattened villi, I think there's a decent chance I have celiac. 

My question is:

Is there any possibility that the celiac blood tests could still show elevated antibodies after a year gluten-free??  To where I could actually have a diagnosis and know I'm on the right track with my health?  I've heard of people saying it took several months for antibodies to be in normal range, so I'm thinking if my antibodies started out very high, maybe after a year they'd still be a bit high.  If my symptoms eating gluten weren't so horrible, I would do a gluten challenge.  But I know I wouldn't last a day.

My stomach issues are 80% better since going gluten-free.  But I also have severe fatigue, muscle and nerve pain which affects my life very negatively.  I have been tested years ago for MS, RA, lupus, lyme---all negative.

Just feeling very frustrated tonight and after 25 flippin years of being sick, I just need some answers.

Thank you for reading all the way through, and replying :)

 

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kareng Grand Master
kareng
Posted
1 hour ago, Jen1104 said:

Hey everybody,

This may be a dumb question but I'm gonna ask it anyway.

A little background:

I believe I may have celiac as I've had all kinds of weird and painful symptoms for many years.  I have been gluten free for a year (very strict, follow paleo diet--no grains or dairy) and I rarely eat any of the processed gluten free foods.

A little background:  I had an endoscopy along with a colonoscopy because of stomach issues 6 months ago.  When I started the gluten-free diet 6 mo BEFORE these procedures, I knew nothing about celiac and didn't realize that you had to be eating gluten for tests to be accurate.  After the endoscopy the dr said he could see some flattened villi but the 5 biopsies showed nothing wrong.  Given my very bad reaction to  even crumbs of gluten and the flattened villi, I think there's a decent chance I have celiac. 

My question is:

Is there any possibility that the celiac blood tests could still show elevated antibodies after a year gluten-free??  To where I could actually have a diagnosis and know I'm on the right track with my health?  I've heard of people saying it took several months for antibodies to be in normal range, so I'm thinking if my antibodies started out very high, maybe after a year they'd still be a bit high.  If my symptoms eating gluten weren't so horrible, I would do a gluten challenge.  But I know I wouldn't last a day.

My stomach issues are 80% better since going gluten-free.  But I also have severe fatigue, muscle and nerve pain which affects my life very negatively.  I have been tested years ago for MS, RA, lupus, lyme---all negative.

Just feeling very frustrated tonight and after 25 flippin years of being sick, I just need some answers.

Thank you for reading all the way through, and replying :)

 

So - I am addressing the blood test question.  It is possible to still be positive after months or a year  - however, that might be rare

Ennis-TX Grand Master
Ennis-TX
Posted
5 hours ago, Jen1104 said:

Hey everybody,

This may be a dumb question but I'm gonna ask it anyway.

A little background:

I believe I may have celiac as I've had all kinds of weird and painful symptoms for many years.  I have been gluten free for a year (very strict, follow paleo diet--no grains or dairy) and I rarely eat any of the processed gluten free foods.

A little background:  I had an endoscopy along with a colonoscopy because of stomach issues 6 months ago.  When I started the gluten-free diet 6 mo BEFORE these procedures, I knew nothing about celiac and didn't realize that you had to be eating gluten for tests to be accurate.  After the endoscopy the dr said he could see some flattened villi but the 5 biopsies showed nothing wrong.  Given my very bad reaction to  even crumbs of gluten and the flattened villi, I think there's a decent chance I have celiac. 

My question is:

Is there any possibility that the celiac blood tests could still show elevated antibodies after a year gluten-free??  To where I could actually have a diagnosis and know I'm on the right track with my health?  I've heard of people saying it took several months for antibodies to be in normal range, so I'm thinking if my antibodies started out very high, maybe after a year they'd still be a bit high.  If my symptoms eating gluten weren't so horrible, I would do a gluten challenge.  But I know I wouldn't last a day.

My stomach issues are 80% better since going gluten-free.  But I also have severe fatigue, muscle and nerve pain which affects my life very negatively.  I have been tested years ago for MS, RA, lupus, lyme---all negative.

Just feeling very frustrated tonight and after 25 flippin years of being sick, I just need some answers.

Thank you for reading all the way through, and replying :)

 

If you follow the diet strictly, no eating out, check everything, gluten free home, etc....I doubt you will have much show out of normal on the antibody test.  Chances are your issues your still having might be a deficiency issue, years later I still need Magnesium and B-vitamin supplements, much lower dosing that I used to need but I still need them or all kind of issues crop up (cramps, sleeping issues, tired, joint issues. etc.) Might look up the deficiencies of Magnesium, B-vitamins, Iron, etc. and see if this might be your culprit.

You could also have other food intolerance, keep a food diary and try rotating your foods a bit more, removing say potatoes, or a spice like garlic, onions etc for a week and see if it improves.
Open Original Shared Link
Open Original Shared Link
Check the newbie 101 thread...you could be missing something obvious like shared house, eating out, scratched pots, glutened colander, a sauce/spice. etc.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

cyclinglady Grand Master
cyclinglady
Posted

It might be worth testing to give you piece of mind.  My antibodies have been elevated in repeat testing over the last five years, but oddly my gut is healed per my last endoscopy/biopsy.  My doctors think my other autoimmune issues maybe impacting my gliadin antibodies test results.  Who knows?  I can not control my other autoimmune issues, unlike I can for celiac disease, and I am not interested in medications at this time, so I just try to eat healthy, reduce stress and exercise.  

  I can tell you that I am formally diagnosed while my husband is not.  He went gluten free 12 years prior to my diagnosis.  The gluten free  diet worked for him.  He never cheats.  Does he wish he had a diagnosis?  Yes, but not enough to get sick on a gluten challenge.  

Keep in mind that once you have one autoimmune issue, others can develop.  So, you might not get to 100%.  Nerve damage might heal or it might not.  Six months might not be enough to see results.  It took me a year or more to feel better,  but I was dealing with more than just celiac disease and I can not say I reached 100%, but close.  

I get feeling miserable and needing validation.    I wish you well! 

Jen1104 Contributor
Jen1104
Posted
  • Author

Thanks for your thoughts guys!

Ennis-

Yep, I've had some of my vitamin levels checked: magnesium, calcium, iron, B6 and B12.  Only thing low was B12 (180, with range being 200-800) and I've been taking sublingual B12 for 6 mo.  Last testing showed it was 780, but no improvement in my symptoms really.

Thanks for the link on the elimination diet.  I've done one for 3 weeks before but no positive results.  Maybe you have to do it longer.  It's difficult though.  I've been grain, dairy, and mostly egg and tomato free (they seem to bother me) for a year now.  I'm running out of food, lol! 

A few months ago, I decided I wasn't going to eat for a couple days, since I just feel this is all related to food.   I definitely noticed more energy than I've had for years!  Crazy! Cant keep that up though :P

Cyclinglady-

Glad to hear your insides are healed.  That's interesting that other autoimmune disease could affect your antibodies, haven't heard that! 

I'm afraid that if my nerve and muscle pain are from celiac that I've had it undiagnosed too long and it may not get better.  Glad to hear you're close to 100%!  I've forgotten what its like to feel good.  Time will tell....

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