Low positive tTG blood work, negative biopsy, doctor says eat gluten-free...feeling crummy tonight

[kg51]

Okay, I'm going to try to be concise, but that's not my strength.

I've had a lifetime of on and off symptoms--more off than on--and most recently has been intermittent nausea, bloating, and stomach pain some days. I've unintentionally lost 20 lbs (15%) since the beginning of 2017.

Blood work 3/2018: positive tTG 19.8 (range <15); normal immunoglobin A: 216 (range 70-312); negative IgG, IgA, and EMA.

From everything I've read the only non-celiac reasons for tTG elevation are end-stage heart failure, liver failure, or other autoimmune diseases--none of which are indicated by my physical exam, symptoms, or other blood work (comp metabolic panel, CBC w/diff, ANA, TSH, and lipid panel).

Though as I review my other blood work and Google madly these values are possibly indicating I'm close to anemic, but not quite...?

Hemoglobin 12.3 (range 12.0 - 16.0) near low; MCV 83.8 (range 81.0 - 100.0) near low; MCH 26.5 (range 27.0 - 33.2) low; MPV 11.2 (range 7.0 - 11.5) near high

The rest was pretty average-looking.

And something that could indicate some inflammation...? Monocytes 0.63 (range 0.10 - 0.60) high

And finally, my vitamin D was in the "insufficient" range...Vit D 24.11 (range 30.0 - 100.0)

ANYWAY...

Endoscopy and biopsy 4/2018: Visually healthy upon scope, biopsy says negative for duodenum villous damage, "mild chronic inflammation" in the stomach/antrum/body, negative H. pylori.

I started eating gluten-free immediately after the endoscopy before the biopsy results were in. I felt pretty good (no stomach pain/bloating, but that could have been coincidental since things are so on/off for me).

The biopsy results came in and the GI doctor said "there's no indication of celiac since there is no damage in the duodenum. Inflammation in the stomach is normal because it's acidic in there. Eat a gluten-free diet. If the weight loss continues schedule another appointment."

But to me--and perhaps I'm reading too much into it--there's

1) no damage (yet?) or
2) it’s patchy and was missed or
3) my blood work was falsely positive

...Right? The GI is recommending eating gluten-free no matter what, but he kept mentioning “non-celiac gluten sensitivity” at the first appointment which I feel wouldn’t be applicable with an elevated tTG value. If I feel better eating gluten-free it doesn't make sense that having an elevated tTG would be non-celiac anything.

But then I go and get one of my bloated/painful stomach aches tonight (exactly 7 days eating gluten-free) and I know I didn't eat anything different...literally ate leftovers.

OKAY...

So to me I interpret all of this as either "yes I have celiac" or alternatively I guess it could mean "potential celiac" and either way I am opting for a gluten-free diet. Or there's the chance it was falsely elevated but I can't seem to find that that's a thing? I'm so bothered that I feel crappy tonight and am still feeling confused.

I don't even know what my questions are. I guess...what now?

[cyclinglady]

Trial the diet for six months.  It takes that long and for some even longer, to see real improvement based on member comments.  Expect set backs like you have experienced.  It is common.   Read the Newbie 101 section located at the top of the “Coping” section or research on your own.  If you do not feel that you are improving (and get that TTG test retaken), look for other illnesses that might have elevated your TTG (e.g. Crohn’s).  

 

[kg51]

7 hours ago, cyclinglady said:

Trial the diet for six months.  It takes that long and for some even longer, to see real improvement based on member comments.  Expect set backs like you have experienced.  It is common.   Read the Newbie 101 section located at the top of the “Coping” section or research on your own.  If you do not feel that you are improving (and get that TTG test retaken), look for other illnesses that might have elevated your TTG (e.g. Crohn’s).  

 

That's what I'm thinking--giving it some months and continuing my food/symptom log and seeing how things go. I am close enough to University of Chicago's Celiac Disease Center to make an appointment with their doctors for a second opinion, but I'm not sure if that's worth my time/money. I guess I can just plug away at eating gluten-free and see how it goes? I feel like I have no answer right now and don't know how much I need to worry about other potential stuff.

[cyclinglady]

Just worry about one thing at a time.  My hubby has been gluten free for 17 years and he does not have a formal diagnosis.  He went gluten free per the poor advice of two medical doctors.  But the diet worked!  There is no way he would do a gluten challenge.  I can not blame him.  

The goal is to feel better.  While it is a shame that your case is not so clear cut, at least you are moving forward.  

Now the hard part, being patient and waiting to see results!  ?

[1desperateladysaved]

I took a very long time one of the reasons is that my body has trouble detoxing.  (MTHFR gene).  Going gluten free did help.

[kg51]

38 minutes ago, 1desperateladysaved said:

I took a very long time one of the reasons is that my body has trouble detoxing.  (MTHFR gene).  Going gluten free did help.

It took a very long time before you noticed a good remission of symptoms? Do you know about how long? I guess I'm just bummed that I had a (possibly coincidentally) good week gluten-free and then a bad night. I wanted things to be cut-and-dry better from then onward.

1 hour ago, cyclinglady said:

Just worry about one thing at a time.  My hubby has been gluten free for 17 years and he does not have a formal diagnosis.  He went gluten free per the poor advice of two medical doctors.  But the diet worked!  There is no way he would do a gluten challenge.  I can not blame him.  

The goal is to feel better.  While it is a shame that your case is not so clear cut, at least you are moving forward.  

Now the hard part, being patient and waiting to see results!  ?

LOL, I'm pretty good at worrying about all of the things simultaneously! You are right though. The goal is to feel better regardless of an official diagnosis or not. I need to be more patient and keep moving forward...still a little disappointed that I got my hopes up with my (possibly coincidentally) feel-good-gluten-free week and then had a bad night.

[1desperateladysaved]

I took a very long time one of the reasons is that my body has trouble detoxing.  (MTHFR gene).  Going gluten free did help.

I can't say how long because I had so many things going besides celiac.

[squirmingitch]

Expect things to be a roller coaster for a while. You'll have good days & bad days, good weeks, & bad weeks. That's normal until you heal. 

Now I want to revisit something here. How many biopsies were done & from what areas? Do you have the report? 

20 hours ago, kg51 said:

The biopsy results came in and the GI doctor said "there's no indication of celiac since there is no damage in the duodenum. Inflammation in the stomach is normal because it's acidic in there. Eat a gluten-free diet. If the weight loss continues schedule another appointment."

That whole bit disturbs me. First that he says no damage in the duodenum indicates no celiac. The celiac damage can occur anywhere in the entire small intestine. When flayed out, it is will cover a tennis court so there's a lot of territory  to cover in there. There should be 4-6 biopsies taken from different areas. How many did he take & from which areas? Secondly & I think the most concerning statement he made is that inflammation in the stomach is normal b/c it's acidic in there????? Seriously????? Seriously???? Um, then every single person on the planet would have inflammation in the stomach. That's just not correct! Our stomachs are designed to handle the acid without getting inflamed. If there's inflammation, there's something causing it & it's not normal stomach acid! 

[kg51]

29 minutes ago, squirmingitch said:

Now I want to revisit something here. How many biopsies were done & from what areas? Do you have the report? 

I do have the report, and I know I asked how he took the biopsies. I can't remember the proper term, but he described "one snip takes two samples," so every two samples were taken from the same area. Here's what I have...

 

Specimens:

 

A. - Tissue, Duodenal biopsy                                                         
B. - Tissue, Gastric antrum and body biopsy  
 
Final Diagnosis

 

A. Duodenum, Biopsy:

Negative for significant pathologic abnormality, duodenal mucosa (negative for villous architectural distortion, increased intraepithelial lymphocytes, significant inflammation and neoplasm). 

B. Stomach, Antrum & Body, Biopsy:

Mild chronic inflammation, nonspecific, gastric non-oxyntic and oxyntic mucosa. 

Negative for Helicobacter pylori-type microorganisms (by properly controlled immunoperoxidase method). 
 
Comments:

 

A.  CD3 is requested to delineate the intraepithelial component of T-lymphocytes. By properly controlled immunohistochemical method, CD3 presents a normal complement of intraepithelial T-lymphocytes.

B.  H.  pylori immunostaining is performed to rule out the presence of H. pylori microorganisms.
 
Gross Description:

 

Specimen A: Submitted in formalin, labeled with the patient's name and "Duodenum, Rule Out Celiac Sprue, Biopsies" consists of 6 tan fragments of tissue, measuring 7 x 6 x 2 mm in aggregate. All is entirely submitted in A1 cassette.

Specimen B: Submitted in formalin, labeled with the patient's name and "Gastric, Antrum and Body, Rule Out H.Pylori, Biopsies" consists of 4 tan fragments of tissue, measuring 6 x 6 x 2 mm in aggregate. All is entirely submitted in B1 cassette.

 

 

...I'm glad I'm not the only one raising an eyebrow at this. I guess the confirmation there is helping me feel better.

 

I was going through University of Chicago's Q&As and found a lot of information...

 

 

Source for the Q&As: Open Original Shared Link

 

Q. My body shouldn’t be producing any antibodies if I only have a non-celiac gluten sensitivity, correct?
A. Correct. If you have “non-celiac gluten sensitivity”, then by definition antibodies found in celiac patients must not be present.

Q. What does the term “potential celiac” mean?
A. A patient who is a “potential celiac” has positive serology (including the highly specific anti-Endomysium antibodies), possibly has symptoms, and has a negative biopsy. A potential celiac may or may not be put on a gluten-free diet, though we typically lean toward recommending the diet even in those potential celiacs who have no symptoms. Early data indicates that, left untreated, celiac disease will develop in the majority of cases.


Q. What are the chances of having a high tTG and a negative biopsy—even though I have a child who was biopsy-diagnosed with celiac—and still being negative for the disease?
A. It’s possible to be truly negative with these facts, especially if the tTG are only mildly elevated. Also check the more specific EMA test. If it’s positive, we would conclude you’re a potential celiac, which means the disease is simply waiting to explode, and we’d suggest a gluten-free diet.

Q. What is an EMA blood test?
A. The anti-endomysial antibody test (EMAIgA), EMA-IgA, is very specific for celiac disease. It’s estimated that a person with an elevated titer of EMA is almost assured of having celiac disease. However, the EMA test isn’t as sensitive as the tTG-IgA test; about 5-10% of celiacs do not have a positive EMA test.

 

 

[squirmingitch]

OK, so the way I'm reading that, & I am by no means an expert, is that he actually did take 6 biopsies but it doesn't specify which portions of the duodenum he took them from. They usually do so this is odd from the normal.

Yes, I'm sorry, I did not address the positive blood at all. With non celiac gluten sensitivity (intolerance), you don't have elevated numbers on any of the celiac serum panel. There is NO test at the present time for NCGS. You had the positive. It's entirely possible you are celiac & things just aren't showing up yet that can give you an official dx. I think you're smart enough to know the drill. You know what this all means. Give the diet a real good shot for at least 6 months. Make sure to read our Newbie 101 thread which is pinned to the top of the Coping section. That information will be invaluable to you. 

We're here for you  if you have any questions or just want to rant & stomp your feet or cry or laugh.

[kg51]

11 hours ago, squirmingitch said:

OK, so the way I'm reading that, & I am by no means an expert, is that he actually did take 6 biopsies but it doesn't specify which portions of the duodenum he took them from. They usually do so this is odd from the normal.

Yes, I'm sorry, I did not address the positive blood at all. With non celiac gluten sensitivity (intolerance), you don't have elevated numbers on any of the celiac serum panel. There is NO test at the present time for NCGS. You had the positive. It's entirely possible you are celiac & things just aren't showing up yet that can give you an official dx. I think you're smart enough to know the drill. You know what this all means. Give the diet a real good shot for at least 6 months. Make sure to read our Newbie 101 thread which is pinned to the top of the Coping section. That information will be invaluable to you. 

We're here for you  if you have any questions or just want to rant & stomp your feet or cry or laugh.

I really appreciate your responses. Between my blood work, endoscopy, symptoms, and University of Chicago's Q&As, I'm inclined to call this "potential celiac," and I'm definitely sticking with the gluten-free thing and documenting closely how I feel.

I'm thinking I'll request follow up blood work in 6 months and go from there. If my tTG is down, vitamin D up, and other values don't look like borderline anemia, then I'm thinking that's pretty clear. If not...then we'll go from there I guess.

[squirmingitch]

You are thinking on your toes! Absolutely correct! Repeat blood work & if the #'s are down & D is up & anemia is not in question or at least the D & anemia chance have improved PLUS you're feeling somewhat better...... Now, I will say that if the tTg is down but not normal it still is going down. sometimes it takes a year or even more to reach normal levels - sometimes not - sometimes it happens very quickly just b/c we are all different.

Another thing is it can be like a roller coaster at first so you can have ups & downs - just know that. Also, if you don't make a single mistake on the diet then you might be the first person in history to get it perfect from the get go.  Just learn from the mistake & move on.

[kg51]

15 hours ago, squirmingitch said:

You are thinking on your toes! Absolutely correct! Repeat blood work & if the #'s are down & D is up & anemia is not in question or at least the D & anemia chance have improved PLUS you're feeling somewhat better...... Now, I will say that if the tTg is down but not normal it still is going down. sometimes it takes a year or even more to reach normal levels - sometimes not - sometimes it happens very quickly just b/c we are all different.

Another thing is it can be like a roller coaster at first so you can have ups & downs - just know that. Also, if you don't make a single mistake on the diet then you might be the first person in history to get it perfect from the get go.  Just learn from the mistake & move on.

I'm not trying to be my own doctor, but...what the GI was saying just wasn't adding up. Thanks again for your responses.

I still think I'm viewing this as "potential celiac" or "celiac but damage wasn't found." But I guess there's also still the chance it's "falsely elevated tTG due to something else."

I'll do 6 months of strict celiac-level of gluten-free eating and see what the blood work says then. Then I wonder if--IF I'm actually on the "potential" side of things--I can "loosen up," so to speak...and try out normal level of gluten-free eating and see how I feel. If I'm feeling good eating at Chipotle and Culver's on occasion (LOL) I'll recheck blood work after 6 months of that (so 1 year total) and see where things are.

Or I guess if my blood work doesn't change at all and I'm still feeling the same then it's time to investigate what else might be brewing.

[squirmingitch]

Right. But I would make one change in that scenario. After the 6 months strict, then instead of going to Chipotle or Culver's, just eat a piece of bread or a cookie or something gluten at home. If you have celiac you'll be glad you were at home when you ate gluten rather than out in the world somewhere. You see, almost without fail, once a celiac has gone gluten-free, if they then eat gluten, they react sooooooooooooo much stronger than they did before they went gluten-free. So if you are celiac, then you won't want to be out at an eatery when you eat gluten.

[kg51]

2 hours ago, squirmingitch said:

Right. But I would make one change in that scenario. After the 6 months strict, then instead of going to Chipotle or Culver's, just eat a piece of bread or a cookie or something gluten at home. If you have celiac you'll be glad you were at home when you ate gluten rather than out in the world somewhere. You see, almost without fail, once a celiac has gone gluten-free, if they then eat gluten, they react sooooooooooooo much stronger than they did before they went gluten-free. So if you are celiac, then you won't want to be out at an eatery when you eat gluten.

I’m sort of terrified of eating straight up gluten as a trial! I was thinking more if I could handle small amounts of cross contamination. Maybe we’ll order a gluten-free pizza delivery in 6 months, haha.