Celiac blood test and symptoms

[Mikeymike93]

Hello. Has anybody had experience with questioning blood test results or diagnosis for celiac. Maybe was diagnosed but symptoms never went away? Or later tried gluten and didnt find any symptoms? Asking because I was diagnosed through auto immune blood test results but my upper scope procedure showed inconclusive results. I went gluten free for 1 year with no cheating and considered myself celiac but many GI symptoms never went away. Now wondering if I try eating gluten and dont find I react badly, what that could mean. Is there any chance those blood test results were not celiac specific and something else? At this same time I want to know if there are people that can eat gluten without initial symptoms? 

 

Thanks

[GFinDC]

It took about 5 years for my symptoms to go away.  Most of them at least.  You may have a timeline you expect for your body to become symptom-free, but it may not be the same as reality.  Mine certainly didn't match my expectations!

The celiac blood antibody tests are pretty darn specific to celiac disease.  They are tests to detect a reaction to gliaden, a protein in wheat.  There is little chance they are positive to a reaction to something else.

People vary in their reaction time.  Some people react in less than an hour, others may not show symptoms for a few days.  Our immune systems vary.

I think if you did a survey you'd find many people with celiac had symptoms for a year or longer after going gluten-free.

One year in might be a good time to re-examine your diet and take stock of what foods you eat that are risky, if any.

Edited April 30, 2020 by GFinDC

[cyclinglady]

It depends. What GFinDC said is true, but I think you need to take a look at your original test results.  If the positive was just slightly elevated or just out of range on the TTG, you could have had another illness.  

Why didn’t the GI find damage?  You could have just been starting to develop celiac disease.  The doctor could have missed the damaged areas (the small intestine is the size of a tennis court).  Your doctor might not have taken enough biopsies.  

Celiac disease symptoms can wax or wane.  One celiac specialist called it a chameleon (always changing).  You could go back on gluten and not experience any GI symptoms for months.  Who knows?  I would rule out other things before going back on a gluten diet.  

Your current symptoms  could be due to another autoimmune disorder or another illness.   I was diagnosed with Autoimmune Gastritis five years after my  celiac disease diagnosis (small intestine had healed).  Another possibility is that you have developed various intolerances.  I once thought I was getting gluten into my diet as I was getting GI issues.  But my hubby, who was gluten free long before me, was not ill.  Turns out it was Xanthan Gum found in most gluten-free commercial products.  

Consider contacting your GI if you do not get relief soon or you just can not figure it out.  

Edited May 2, 2020 by cyclinglady

[Mikeymike93]

I right am thing tRight that's the thing. The upper scope said is couldnt find anything specific but the blood test came back VERY positive for "transglutaminase iga and igg" but I was unwell from something for sure at the time.   My question was to them " i have been unwell for 2years, and if I had celiac that whole time and kept eating gluten, wouldnt I have damaged my SI enough to show something positive on the scope?" and "how did my villi survive with no damage for that long?" . I am thinking just to eat a bit of wheat and see how I react from it. That kind of why I was asking about symptoms if anybody tries that before. Sound like it could be within 72hours. Going for a second opinion as well when covid is over just to check

[cyclinglady]

If your result was very positive, chances are you do have celiac disease.  I am sorry that you are doubting your diagnosis.  Did you read my comments that celiac damage is often patchy and is missed because not enough biopsies were taken or damage was further down the small intestine?  A vast majority of celiacs do not heal.  Why?  Because they either do not adhere to the diet or continue to get small gluten exposures.  It takes time to master the diet and time to identify co-existing food intolerances as GFinDC suggested.  

Consider trialing the Fasano diet which would be a much safer way to experiment.  No eating out!  

https://res.mdpi.com/d_attachment/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf

If after a few months you are not healing, see your doctor!  

Hey, has your doctor run repeat antibodies testing?  Has your result decreased?  The results should be on a downward trend.  

Edited April 30, 2020 by cyclinglady