Could the test results be wrong?

[Mikeymike93]

Hello. Has anybody had experience with questioning blood test results or diagnosis for celiac. And maybe how you knew for sure by symptoms it was 100%? Maybe tried gluten and didnt find any symptoms and then realized later it caused trouble?

 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.

I also have gastritis and gallstones for sure which is why celiac is just another GI related thing on top of what I know I have. 

[Scott Adams]

Is there any chance you can share your test results? In general the blood tests they give now are ~98% accurate.

[Mikeymike93]

So the positive results were dedicated Gliadin slightly high transglutamine IGG really high (>160) normal i think is 15-25. and IGA (28) normal is 15-25. Then said confirm with endoscopy. Which came back inconclusive with villi ok. 

[cyclinglady]

Can you get repeat testing? (This should be offered up annually per the celiac research centers as a standard for follow-up care.).  If your tests results are lower, then it helps to confirm your celiac disease diagnosis.  You would be healing.  

Gallstones and gastritis can still act up even if you have healed from celiac disease.  

[Chrismark]

On 4/30/2020 at 7:45 AM, Mikeymike93 said:

Hello. Has anybody had experience with questioning blood test results or diagnosis for celiac. And maybe how you knew for sure by symptoms it was 100%? Maybe tried gluten and didnt find any symptoms and then realized later it caused trouble?

 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.

I also have gastritis and gallstones for sure which is why celiac is just another GI related thing on top of what I know I have. 

I have gone gluten free for several years, and many of the symptoms are still with me, and never went away. I found that the gluten never totally left my body. Doctors told me that they had no answer. The reason that I know the gluten is still in me is that it is still. very slowly, leaving me.

[Chrismark]

On 5/1/2020 at 5:29 PM, cyclinglady said:

Can you get repeat testing? (This should be offered up annually per the celiac research centers as a standard for follow-up care.).  If your tests results are lower, then it helps to confirm your celiac disease diagnosis.  You would be healing.  

Gallstones and gastritis can still act up even if you have healed from celiac disease.  

I was tested twice for Celiac and told that the test results indicated that I did not have Celiac Disease.  However, I did have all the symptoms. Spoke to a specialist, and he said that I should write down all of my symptoms, and give this list to another person, so I cannot see it. I was then told to go 100% Gluten Free for one month, and then write a list of my symptoms.  I compared the original list with the new list, and it was obvious that even though the blood test indicated that I did not suffer from Celiac Disease, the test was wrong.  The symptoms had improved dramatically without any gluten in me.

[GFinDC]

3 hours ago, Chrismark said:

I have gone gluten free for several years, and many of the symptoms are still with me, and never went away. I found that the gluten never totally left my body. Doctors told me that they had no answer. The reason that I know the gluten is still in me is that it is still. very slowly, leaving me.

Hi Chrismark,

Gluten doesn't stay in the body for long.  It comes out in the stool at some point.  I think what you mean is that you are still having an immune reaction or GI symptoms?  The immune systems reactions can go on for weeks to months depending on the person.  All it takes is a tiny amount of gluten to keep the immune system revved up and attacking.  So a tiny gluten exposure every 3 weeks can keep symptoms going forever.

The other thing that can happen to people is they may develop reactions/intolerances to other foods besides gluten.  Any food can become irritating if the gut becomes sensitized to it.  Dairy and oats are 2 foods that often cause symptoms, but soy, eggs, corn, zanthan gum, nightshades, fish etc can all be problems as well as any other food.

Finding these other food intolerances can take time and an elimination diet.

[Mikeymike93]

Have you heard of celiac disease where you actually can eat a bit of gluten without having symptoms? 

[cyclinglady]

4 hours ago, Mikeymike93 said:

Have you heard of celiac disease where you actually can eat a bit of gluten without having symptoms? 

Sure.  Some celiacs are asymptomatic but that does not mean that their small intestines are not being damaged.  

[GFinDC]

13 hours ago, cyclinglady said:

Sure.  Some celiacs are asymptomatic but that does not mean that their small intestines are not being damaged.  

Right, symptoms and damage are two different things.

@mikeymike, Silent celiac is when a person has no symptoms but still has celiac disease.  That situation could last for years until the person develops nutrient deficiencies that cause illness, or joint or skin symptoms, or brain damage (ataxia), or just plain dies.

There was an article a while back saying that many celiacs are exposed to trace amounts of gluten in foods frequently.  Turns out the world isn't perfect.  There are pills you can take with enzymes to help digest trace amounts of gluten.  The better option is to avoid anything but whole foods or certified gluten-free foods until your symptoms go away.

Edited June 19, 2020 by GFinDC