kg51

3 weeks gluten-free...my GI said to eat gluten-free after positive TTG blood work but negative endoscopic biopsy. 

We ate out for Mother’s Day at a restaurant that insisted they were safe and sounded great talking about how they’d prevent cross-contamination. I had a salad with shrimp and an entree of scallops. I’m about 2 hours passed the end of the meal and the worst of it was from 0.5 - 1.5 hours after eating...terrible lower abdomen cramping (not productive, no trips to the bathroom), nausea, racing heartbeat (it was like 115 bpm just sitting down). The cramping is getting better with resting and the nausea and racing heart seems to have passed. I’m not going to assume it’s all over but I’m hopeful. Maybe it was the seafood? It was a high quality restaurant. I don’t know. I don’t like not knowing. 

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. 

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.

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.

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...

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.

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.

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?

I'm wondering if they all relate to one another at all or if it's just random.

-What were your symptoms of celiac disease prior to diagnosis?

-How bad was the damage discovered with your endoscopy/biopsy? (Marsh rating?)

-What's it like when you "get glutened" now? How long have you been gluten-free? Has your reaction changed over time?

Just now, cyclinglady said:

Sure, you can do that.  But give your doctor credit for trying.  (I have heard much worse on this forum).  Let’s say you do not have celiac disease at this time.  Maybe you have Crohn’s.  A gluten free diet or AIP diet (which includes being gluten free) can cause IBD (Crohn’s or UC) disorders to go into remission based on a new small study out of La Jolla in San Diego.  Isn’t the goal to feel good all the time?     Trying a diet over a biologic drug would be a great place to start.  Then talk about antibodies testing for other AI issues that might be the root cause of your current issues.

Diagnosing a patient is like an onion.  You have to unpeel one layer at a time.  Or think of your 5th grade science project.  You picked  a hypothesis and then worked through it. You did not change the variables throughout the experiment, because if you did your hypothesis might be invalid.   That is what your doctor is trying to work through.  

Wait for the results.  Make sure you have all your medical records in hand to share with the next doctor.  I am a big advocate for second opinions.  But if the pathologist’s reports shows villi damage, there is no doubt.  No need for a second opinion.  You have it....the pathologist!  

Haha, I'm trying to be patient, I promise  I do like going over all possible outcomes so I feel like I have a better understanding of things.

My symptoms don't seem indicative of other issues (intermittent nausea, bloating, stomach pain...no diarrhea or constipation). And my blood work was clear from other signs of inflammation. But you're very right. I need to see what the biopsy results say and go from there.

11 minutes ago, cyclinglady said:

Remember, the small intestine is the size of a tennis court.  Your damage might not be in the easily reachable or normal areas that it is commonly found.  I know it is hard not knowing, but you should have results soon.  I assume your GI said that visually everything looked good?  That is what happened to me.  I had to wait for my results, like you.   So hard to wait. 

That's what I'm keeping in mind, and why I'm assuming no damage will be found...especially given my "low positive" tTG value. If my blood work was positive across the board or even if my tTG were high I don't think I'd be as skeptical about finding damage in the biopsy. So with a "low positive" tTG I think I'm just second guessing everything and wondering if this could all be a false positive of sorts? I can't seem to find a clear answer on that.

Yes, he said visually everything looked good in there, but obviously villi damage is microscopic so I anxiously await the biopsy results.

I'm also wondering if it might be useful to try for an appointment with University of Chicago's Celiac Disease Center (www.cureceliacdisease.org) since I'm near and my GI kept throwing around "non celiac gluten sensitivity" which does not sound applicable for an elevated tTG which decreases my confidence in that doctor.

8 hours ago, cyclinglady said:

 You are correct that an elevated TTG can NOT be due to Non-Celiac Gluten Sensitivity. 

So from my understanding tTG cannot be falsely elevated for no reason, it'd be due to a different health issue (though odds are it's celiac)...?

I had my endoscopy and biopsy today and am getting ahead of myself with potential outcomes. Either...

1) the biopsy will be positive and I will officially be diagnosed with celiac, or

2) the biopsy will be negative, which could mean there’s no damage (yet?) or it’s patchy and was missed or my blood work was falsely positive.

Right?

History: positive tTG (19.8 with a <15 range), but negative everything else (EMA and DGP), and normal immunoglobulin A. I've had a lifetime of on and off symptoms—more off than on. Currently experiencing intermittent nausea, bloating, and stomach pain.

The GI is recommending eating gluten-free no matter what, but he kept mentioning “non celiac gluten sensitivity” which I feel wouldn’t be applicable with an elevated tTG value?

With no indications of other health issues like diabetes or liver failure could the tTG have been falsely positive?

19 hours ago, GFinDC said:

Symptoms can vary a lot.  Before I went gluten-free there were days I felt fine.  There were also days I felt awful.  Symptoms were seemingly not directly related to what I was eating recently. 

Thank you for sharing your experience. Nothing I've felt has ever stuck for weeks and months and years. It's usually a few weeks where half the days are bad ones, half are okay, and then a few weeks of being okay.

3 minutes ago, cyclinglady said:

Keep advocating for a root cause, because a slightly elevated TTG can be due to other autoimmune diseases and might not be celiac-related at all or you can have concurrent illnesses.  (Dang, it can be so complicated!)

I wish you well.  

I'm definitely getting checked by a GI for sure. Can something like Chron's be present without diarrhea???

Mostly I was curious if people who have been diagnosed have experienced symptoms that come and go, or if when eating a gluten-containing diet is it possible to experience symptoms after a meal even if it were gluten-free.

36 minutes ago, tessa25 said:

The positive is not overly high so it's not a slam dunk for celiac.

Does it work that way? 

Looks like cystic acne to me. I get the same thing on my jawline close to my earlobes.

tTG: positive (19.8 with a <15 range) / EMA: negative / IgG and IgA: negative / immunoglobin A: 216 (range 70-312)

I have a lifetime of on-and-off symptoms that could be explained be a celiac diagnosis, but currently it seems I have a few days with periods of nausea (<1 hour) and then stomach pain and bloating after dinner (pretty uncommon earlier in the day), followed by a few days of being mostly normal (maybe still some intermittent nausea).

The pain/bloating is unrelated to if my dinner contained gluten or not. Is that possible? Like last night I ate at a super gluten-free-friendly restaurant and gave a test run of ordering gluten-free and 30 minutes after finishing I was near tears and breathing through the pain and white-knuckling the steering wheel on my drive home. The meal was shrimp and brussels sprouts  and mashed potatoes--nothing crazy.

I'm so scared of getting a positive diagnosis but also so scared of the doctor saying it's not celiac and not having any answers.

That was helpful, thank you for your further clarification on your previous comment. I wasn't sure if "a positive is a positive" or not or if a value's closeness to the range mattered.

4 hours ago, squirmingitch said:

It doesn't work that way. Different labs have different reference ranges so one can't judge anything by saying 19.8. That's why we always ask people to list the reference ranges from their paperwork which you did so we didn't have to ask you.

I posted the range, it's <15 u/ml.

With a positive Tissue Transglutaminase now, even if a future biopsy were negative, is a gluten-free diet recommended? Goodness, I can't wait to talk to my doctor.

Is there a Tissue Transglutaminase range for celiac-positive people? Is my 19.8 considered low?

32F with a lifetime of various digestive upsets, but nothing that's ever been super severe, and nothing that's been consistent throughout. I had a panel done through my primary care doctor and the results popped up in my online account. While I wait to hear back from her (though I'm a little doubtful of her knowledge and will follow up with a GI regardless)...

Immunoglobin A: 216 (range 70-312)

Gliad (Deanidated) Ab IgG: negative

Gliad Deanidated) Ab IgA: negative

Endomysial Antibody IgA by IF: negative <1:10 (range <1:10)

Tissue Transglutaminase Ab IgA: 19.8 (range <15)

Tissue Transglutaminase IgA Qualitative: positive

So I understand that testing the immunoglobin A is to make sure it's normal to rule out the potential for false negatives. Then IgG and IgA and Endomysial Antibody are all negative, but the Tissue Transglutaminase is positive.

Is 19.8 "low positive?" Why are the others negative? Is this still possible/probably celiac disease?