Blood work positive, awaiting confirmation...can symptoms be so come-and-go?

[kg51]

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.

[tessa25]

A positive on anyone celiac test should lead to a gastroenterologist doing an endoscopy to see if you have celiac. You do have a positive so you should do the next step. The positive is not overly high so it's not a slam dunk for celiac.

Since you do have gastro related pain you should have a gastroenterologist run their standard series of tests to see what else it could be as well.

 

[kg51]

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? 

[tessa25]

An endoscopy would tell if you have celiac. Once testing is done you could try strict gluten free (no restaurants) for a few months if you want to see if gluten free helps.

CYA: I have no medical background whatsoever.

[kg51]

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.

[cyclinglady]

Hi!  

The gold standard of diagnosing celiac disease is still done by obtaining biopsies through an endoscopy.  Whoever gave you the celiac antibodies blood test, may have failed to to tell you that you need to remain on a full gluten diet until you can get an endoscopy.  All celiac testing requires you to be on a gluten diet.  Did you go gluten free or gluten light prior to your blood draw? 

What is super friendly restaurant?   Was it is rated 100%  safe by celiacs on an app like “Find Me Gluten Free” or recommended by a local celiac support group?    Or do they just offer a gluten free menu?    Eating out is risky.  It can be done, but there still is risk.   

Sure, your food might have been gluten free, but most untreated celiacs have intolerances (collateral damage).  You could have had an allergy to shrimp.  The Brussels Sprouts might have impacted you.  What about lactose (butter) in the mashed potatoes or maybe they added garlic?  You just did not eat three things, you ate a bunch of things.  Do not forget that maybe that food was spoiled.  You could have had food poisoning and might not be celiac-related at all.  

Celiac symptoms do come and go.  In fact, you might not even have any GI issues (I did not when I was diagnosed, just a lifetime of iron deficiency). 

Get checked by a Gastroenterologist.   I could have sworn my niece had celiac disease as it is genetic, but it turns out she has Crohn’s.  The point is it was a good that my niece persisted in seeking a diagnosis.  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.  

[tessa25]

When your digestive system is damaged many different foods can cause symptoms.

[kg51]

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???

[cyclinglady]

I can not say (as member Gemini says, “I do not wear a white coat”), but Crohn’s typically presents in younger people.  I assume your name includes 51 as either the year you were born or your current age).  If so, celiac disease is more likely based on my research, but nothing is impossible.  

My niece did not have any of the typical Crohn’s symptoms at all.  Everything was ruled out and finally a pill camera caught severe damage out of reach of both scopes.  Her 4th GI was amazed that her symptoms were not horrible.  Diagnosing anyone with an autoimmune disorder is complicated.  Symptoms overlap with many illnesses.  

[GFinDC]

2 hours ago, kg51 said:

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.

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.  Yes, if your gut is irritated, any food can cause symptoms, even gluten-free foods.  Another tie-in to that is gut bacteria, which can get out of whack in an irritated gut and cause symptoms themselves.   Sugar and sweets are a possible trigger for bacteria overgrowth.  Dairy can cause symptoms because the celiac damage interferes with our ability to digest diary.

Recovery after going gluten-free is not necessarily a straight line upwards either.  It can take months or years to recover good health.

[I Want To Be Well]

It would be worth your while to follow a low FODMAP diet for a while to find food culprits other than gluten. Broccoli is on that list which for me is an intolerable food.

[kg51]

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.

[GFinDC]

One of the problems with diagnosing celiac disease is the variableness of symptoms.  Since malnutrition and inflammation can damage so many different parts of the body, and can affect so many body functions, it is really difficult to nail down a standard list of symptoms,  The most classic symptoms people think of are digestive symptoms.  But some people have mostly nuerological symptoms,  others have mostly skin symptoms, or joint pain or insomnia, or a myriad of other symptoms,  Or in some cases no symptoms, but they still have the condition.

That's why blood tests and a biopsy are so important for diagnosis.  But people with the skin condition Dermatitis herpetiformis (DH) also can test low on the blood tests and the gut biopsy, so they do a skin biopsy on them.

Celiac is not an easy disease to diagnose sometimes.

[amyschicks]

On 4/8/2018 at 7:38 AM, kg51 said:

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.

I'm still on my search for healing and understanding so I can't help with what your issue is but I can say that you're not alone! Be strong! <3