Testing Confusion. Diagnosed years ago, latest testing says Celiac Negative!

[Ashleigh]

Hello

I was diagnosed years ago with celiac disease, With positive blood test and positive biopsy.

Recently had to have an endoscopy for h pylori and ulcers. The doctor noted that normal mucosa was seen at the entrance to the duodenum. No villi atrophy seen, even  under the microscope. 

So Dr ordered anti tissue transglutaminase antibody blood test (ttg). It came back 15 U/ml. So i think only slightly positive.  

So a weak positive ttg test a negative biopsy test. So she ordered an Endomysial (EMA) test. It came back negative. 

 

How can i be diagnosed years ago as positive, +ttg and + biopsy.

Now only weak positve ttg?

So confusing. Could it be another autoimmune disease?

 

[trents]

"No villi atrophy seen at the entrance to the duodenum." What about the rest of the duodenum? Doesn't sound like it was a complete check for villous atrophy as would be done when checking for celiac disease. After all, they were look for h.pylori and ulcers. Or, you've been consistent enough with eating gluten free to experience healing of the villi but still getting enough gluten here and there to produce a weak positive for antibodies.

[Ashleigh]

7 minutes ago, trents said:

"No villi atrophy seen at the entrance to the duodenum." What about the rest of the duodenum? Doesn't sound like it was a complete check for villous atrophy as would be done when checking for celiac disease. After all, they were look for h.pylori and ulcers. Or, you've been consistent enough with eating gluten free to experience healing of the villi but still getting enough gluten here and there to produce a weak positive for antibodies.

Maybe she didn’t go far enough down that’s what I was thinking. But I remember she said to the naked eye it didn’t look like I had celiac, then the microscope findings were the same. She took 5 samples. 
 

I’ve been eating gluten for a while now so I would expect results to have shown. 

[trents]

Ashleigh,

If you were diagnosed with celiac disease "years ago" why are you back eating gluten? Or, did you never go gluten free in the first place?

Edited April 30, 2022 by trents

[Ashleigh]

11 minutes ago, trents said:

Ashleigh,

If you were diagnosed with celiac disease "years ago" why are you back eating gluten? Or, did you never go gluten free in the first place?

I just stopped for a while about a year, so enough to be seen in the biopsy now I’m not sure I even have it. 
 

maybe slight celiac but I was more worried about positive ttg maybe indicating another autoimmune disease if not celiac 

[trents]

Are you asymptomatic when consuming gluten?

[Ashleigh]

18 minutes ago, trents said:

Are you asymptomatic when consuming gluten?

Mostly yes. I have esophagitus and gastritis,but can tolerate gluten well enough. Now I feel as if it was all in my head other symptoms like lathargy and sometimes nauseous. 
 

but when I’m gluten free not too different. 

Just now, Ashleigh said:

Mostly yes. I have esophagitus and gastritis,but can tolerate gluten well enough. Now I feel as if it was all in my head other symptoms like lathargy and sometimes nauseous. 
 

but when I’m gluten free not too different. 

Also when I was first diagnosed it was in the uk and I was just told positive I didn’t see the results myself 

[trents]

29 minutes ago, Ashleigh said:

Mostly yes. I have esophagitus and gastritis,but can tolerate gluten well enough. Now I feel as if it was all in my head other symptoms like lathargy and sometimes nauseous. 
 

but when I’m gluten free not too different. 

Also when I was first diagnosed it was in the uk and I was just told positive I didn’t see the results myself 

I am not aware of anything that can cause a positive tTG-IGA result besides celiac disease. There are some diseases, foods (dairy) and meds that can blunt villi like celiac disease does but I'm not aware of anything besides celiac disease that can cause positive tTG-IGA. But we are finding out new stuff all the time in this area of medicine.

[Scott Adams]

There is no such thing as a mild case of celiac disease, or slight celiac disease. Just because you don’t have more severe symptoms does not mean that you do not have the same health risks should you continue to eat gluten. You’ve had two positive test for celiac disease separated by years, so clearly you need to be eating a gluten-free diet for life. Sorry to break this news to you.

[Kate333]

Hi Ashleigh.  If you are recently getting nauseous, esp. after eating gluten, that sounds like your GI system is definitely sounding an alarm by triggering inflammation because it doesn't like what you are eating.   I would have mentioned stress/IBS as factors, but since you note you have already returned to eating gluten, I think you have the answer.

My advice is to hear and respect your body's signals--even subtle ones.  I am kind of in the same boat.  Diagnosed in late 2019, started strict gluten-free diet in early 2020 then, after nearly 2 years of hard work/effort, my latest TTG blood test/EGD biopsies were "normal".    

Sure, living gluten-free is a big pain! It is only human nature to want to ditch the anxiety, gluten fears lifestyle/routine every time we buy groceries, consider eating out/sharing meals, or endlessly having to educate others how even "trace" gluten can harm us.  But that is the price we have to pay in order to avoid setbacks.   Personally, I don't want to risk damaging my body again/undoing all my hard-won progress/healing to date by letting down my guard.  It's just not worth it.  

Apologies if I sound judgmental here, but I see this same misguided, dangerous mindset harm so many patients, often those with celiac disease, high blood pressure/cholesterol, diabetes, smokers, alcoholics, even Covid-deniers--you name it.   It's amazing how powerful, persuasive our minds can be: "Oh one more (high fat/high sugar or gluten meal, cigarette, or drink, etc. ) or just 'a little diet cheating' won't hurt me."  If only life were so simple.   If anything else, the last 2 years of this pandemic have taught us all a dramatic but vital lesson:  trying to minimize or wish away serious, chronic health conditions can't keep us safe.   

   

[knitty kitty]

@Ashleigh,

A slight positive for Celiac Disease is a positive for Celiac Disease.  It's like being told you're slightly pregnant.  It's going to develop into something bigger.  

The damage caused by Celiac Disease works on a sliding scale.  

While you had been gluten free, your intestines would have healed from previous damage and your immune system's antibody producing cells would not be producing antigens to gluten without gluten present. 

However, when you added gluten back into your diet, the antibodies against gluten will have started to be produced again.  And more and more antibody producing cells are going to join the party causing more severe symptoms and intestinal damage as gluten consumption is continued.  

You said "Mostly yes. I have esophagitus and gastritis,but can tolerate gluten well enough. Now I feel as if it was all in my head other symptoms like lathargy and sometimes nauseous."

Esophagus, gastritis, lethargy and nausea ARE symptoms of Celiac Disease.  Insufficiency in Thiamine (Vitamin B1) has been shown to be related to these symptoms.  We need more thiamine when we're sick or under emotional or physical stress.  

Ask to be checked for vitamin and mineral deficiencies as part of proper follow up care for Celiacs.  

Discuss with your doctor the benefits of supplementing with vitamins and minerals while you are healing again.  A B-Complex supplement is especially helpful, as is Vitamin D.  

You've got a diagnosis.  Be thankful your Celiac diagnosis came early in life for you.  There's many more of us who didn't get a proper diagnosis until later in life who have a cascade of health problems due to untreated Celiac Disease.   The treatment is simple.  Go gluten free for life.  

[Sunny1971]

On 4/30/2022 at 9:47 AM, trents said:

"No villi atrophy seen at the entrance to the duodenum." What about the rest of the duodenum? Doesn't sound like it was a complete check for villous atrophy as would be done when checking for celiac disease. After all, they were look for h.pylori and ulcers. Or, you've been consistent enough with eating gluten free to experience healing of the villi but still getting enough gluten here and there to produce a weak positive for antibodies.

I recently had a endoscopy to try and find out what has been causing my debilitating symptoms when every test comes back negative or finds something completely unrelated. I am shocked with how uneducated doctors are in the area of celiac!!  I do not have biopsy results as of yet but after coming across this site I have found a home with so many people living like me!  I decided to go gluten free five days ago and I am quickly improving. Today was the first morning I woke without nausea and pain in months and I only look five months pregnant instead of nine and that’s saying a lot because I had twins!  Lol
 

I’m no doctor but it seems obvious to me that no villi damage (especially when your entire small intestine hasn’t been investigated) does not mean you aren’t Celiac!!!  I read it could take several biopsies to find and if you haven’t been eating gluten prior to the biopsy it also may not show. I could be wrong because this is so new to me but I’d be asking for a new gastroenterologist who is more familiar with celiac disease. 

[Wheatwacked]

Could also be Non Celiac Gluten/Wheat Sensitivity. The diagnosis is confirmed by ruling out celiac disease then trial GFD showing improvement followed by Gluten Challange with return of symptoms. Prevalence is 10% vs. only 1% diagnosed Celiac Disease.

[trents]

46 minutes ago, Wheatwacked said:

Could also be Non Celiac Gluten/Wheat Sensitivity. The diagnosis is confirmed by ruling out celiac disease then trial GFD showing improvement followed by Gluten Challange with return of symptoms. Prevalence is 10% vs. only 1% diagnosed Celiac Disease.

Ditto to what Wheatwacked said, Sunny1971, about NCGS. Many of the same symptoms as Celiac Disease but does not damage the villi. Antidote is also the same: no gluten. Some experts feel it may be a precursor to celiac disease.

[Ginger38]

1 hour ago, trents said:

Ditto to what Wheatwacked said, Sunny1971, about NCGS. Many of the same symptoms as Celiac Disease but does not damage the villi. Antidote is also the same: no gluten. Some experts feel it may be a precursor to celiac disease.

Will NCGS cause positive TTG-IGA antibodies? I thought that wasn’t the case 

[trents]

13 minutes ago, Ginger38 said:

Will NCGS cause positive TTG-IGA antibodies? I thought that wasn’t the case 

We were replying to the post made by Sunny1971 who says every test came back negative. We assume she was referring to celiac antibody tests.

[Ginger38]

10 minutes ago, trents said:

We were replying to the post made by Sunny1971 who says every test came back negative. We assume she was referring to celiac antibody tests.

Oh sorry, my bad- thanks for clarifying!! 

[Sunny1971]

20 minutes ago, trents said:

We were replying to the post made by Sunny1971 who says every test came back negative. We assume she was referring to celiac antibody tests.

Oh sorry I should have explained better. Every test for every other thing I mean. I have had ultrasounds, multiple blood tests, CT’s, colonoscopy, hida scan etc etc and nothing. I was giving up hope.  I waited eons for a gastroenterologist to do an endoscopy so now waiting for results of the biopsy. I sure hope this guy knows what he is doing because he told me he has never had a patient like me with so many things going on at the same time. 🙄