Not Sure If I Have It Or Not... ?

[kadege]

I am currently in the middle of a 3 month gluten-free diet between 2 antibody blood tests (trying to diagnose without a scope). 

 

Before I had my first test, the reason I went to the Dr. was just for a general physical/checkup because I had been feeling sick for about 2 weeks following an extremely stressful week. I would have a weird burning/painful/generally just sick feeling in my stomach, anxiety for no reason, and extreme fatigue. The Dr. decided to test me for diabetes and celiac as well as run a full panel to check all my levels. Everything was good except my celiac antibodies were off the charts in 1 area (they were in normal range for the other 2 tests they ran...results are in another thread here I posted a while back) 

 

I have been super careful about avoiding gluten. I've brought my own toaster to the work and kept it in my office so no one else will use it. I ask Mexican restaurants about the wheat in their cheese sauce. I have been trying really hard to do it right. But as of the last few days, I have started feeling kinda sick after eating again. Obviously I'm really new to this so maybe I'm just missing some gluten somewhere, but I don't even know where it would be. 

 

I'm kind of wondering at this point if I even have celiac at all. Is there any other reason I would've had those antibodies other than gluten? Or could it have been a false positive? I have no family history and I was only sick for 2 weeks, so I'm having a hard time wrapping my head around the celiac thing. Most of you on here were sick for years, and way sicker than I was at that. Maybe I"m just lucky we caught it as soon as my stress kicked it in? I don't know... I"m just kind of questioning everything at this point...

 

Input?

[Jays911]

Go back on gluten and get the scope.  It is the onl way to be sure.  My labs were inconclusive, but the endoscopy confirmed it, 

[cyclinglady]

I think your doctor is misguided! I have never heard of such a thing. Testing again in 3 months to see if your antibodies have gone down (for diagnosis) is crazy because many folks continue to have elevated antibodies for over a year simply because that is how their body is or they maybe getting exposure to gluten. Plus, the learning curve in avoiding gluten is steep! The chances for your glutening yourself or someone else doing it (e.g. Restaurant) is high during the first three months.

I probably said this before, but my ttg tests were negative. Only the DGP iga was positve (the iga one was negative) and yet I had a Marsh Stage IIIB (moderate to severe villi damage) on my biopsy results.

Oh, iron-defiency anemia hidden by a genetic anemia (thalassemia) was my only symptom and caught by my GI during a routine colonoscopy (Yep, over 50!)

[nvsmom]

Which test was positive?  The deaminated gliadin antibodies (DGP) and endomysial antibodies (EMA) tend to go down faster than the tissue transglutaminase (tTG ) tests do. You MAY see a decrease in the DGP or EMA in the first three months gluten-free, but as the others said, the tTG can take many months to a couple of years to get down to normal.  For example, my ttG IgA was quite high at diagnosis and after 9 months gluten-free it had been reduced but I would still have tested positive as a celiac; my EMA IgA was down to normal by then.

 

The tTG IgA can have a false positive about 5% of the time.  Those false negatives are usually rather weak positives, like a 21 or 22 if the normal range is 0-20.  False negative tTG IgA results are generally caused by diabetes (T1), chronic liver disease, thyroiditis, colitis, crohn's, or a serious infection.  In other words, something (illness) is causing that false positive - it doesn't happen for no reason.

 

The DGP tests are even more specific to celiac disease, and the chances of false positives are even lower.  See page 12 of this report for more info: Open Original Shared Link

 

If you are going to retest, the better time to do it would be after 6 months gluten-free - like 9 or 12 months gluten-free.

 

You may be getting cross contaminated at the restaurants when you eat out.  Tortilla chips in a restaurant are often not safe because the oil may have been contaminated or they added wheat to crisp them up.  Sauces (like soy and bbq) and spices may also be contaminated... even cooking locations (like a grill) can be contaminated.  When eating out you must be very very careful, and even then you are taking a risk.  I would guess that when a celiac is glutened it is usually (maybe 80+%) of the time from eating out, whether it is at a restaurant or food that someone else has made.  Most of us have reduced the frequency that we eat out since it means we are risking a few weeks of poor health for one meal... usually not worth it.  When I go out I usually just order a drink so I can enjoy friends but not get sick.  KWIM?

 

Keep in mind that most celiac disease symptoms are silent: vitamin deficiencies, anemia, osteoporosis, etc.  And then there are the ones you wouldn't think to associate with a PB&J sandwich like migraines, ataxia, neuropathies, comprehension issues, and arthritis... Plus there are the other autoimmune diseases that start popping up because an undiagnosed celiac is living in a state of internal inflammation even if they can't feel it: thyroiditis, diabetes, MS, or others.

 

Symptoms come and go too.  I had good years and bad years, good months and bad months, and then good and bad days. Symptoms do not always correlate to the severity of the disease.

 

Best wishes with whatever you decide to do.

[kadege]

Which test was positive?  The deaminated gliadin antibodies (DGP) and endomysial antibodies (EMA) tend to go down faster than the tissue transglutaminase (tTG ) tests do. You MAY see a decrease in the DGP or EMA in the first three months gluten-free, but as the others said, the tTG can take many months to a couple of years to get down to normal.  For example, my ttG IgA was quite high at diagnosis and after 9 months gluten-free it had been reduced but I would still have tested positive as a celiac; my EMA IgA was down to normal by then.

 

The tTG IgA can have a false positive about 5% of the time.  Those false negatives are usually rather weak positives, like a 21 or 22 if the normal range is 0-20.  False negative tTG IgA results are generally caused by diabetes (T1), chronic liver disease, thyroiditis, colitis, crohn's, or a serious infection.  In other words, something (illness) is causing that false positive - it doesn't happen for no reason.

 

The DGP tests are even more specific to celiac disease, and the chances of false positives are even lower.  See page 12 of this report for more info: Open Original Shared Link

 

If you are going to retest, the better time to do it would be after 6 months gluten-free - like 9 or 12 months gluten-free.

 

You may be getting cross contaminated at the restaurants when you eat out.  Tortilla chips in a restaurant are often not safe because the oil may have been contaminated or they added wheat to crisp them up.  Sauces (like soy and bbq) and spices may also be contaminated... even cooking locations (like a grill) can be contaminated.  When eating out you must be very very careful, and even then you are taking a risk.  I would guess that when a celiac is glutened it is usually (maybe 80+%) of the time from eating out, whether it is at a restaurant or food that someone else has made.  Most of us have reduced the frequency that we eat out since it means we are risking a few weeks of poor health for one meal... usually not worth it.  When I go out I usually just order a drink so I can enjoy friends but not get sick.  KWIM?

 

Keep in mind that most celiac disease symptoms are silent: vitamin deficiencies, anemia, osteoporosis, etc.  And then there are the ones you wouldn't think to associate with a PB&J sandwich like migraines, ataxia, neuropathies, comprehension issues, and arthritis... Plus there are the other autoimmune diseases that start popping up because an undiagnosed celiac is living in a state of internal inflammation even if they can't feel it: thyroiditis, diabetes, MS, or others.

 

Symptoms come and go too.  I had good years and bad years, good months and bad months, and then good and bad days. Symptoms do not always correlate to the severity of the disease.

 

Best wishes with whatever you decide to do.

 

I'm not sure what abbreviation this is... it was the Gliadin Iga Abs2. It was a 329 with a moderate/strong positive being >30. My IgA was 144 with the standard range of 91-414 and the Transglutaminase Iga was <2 with negative being 0-3. I think that last one is the tissue one? 

[nvsmom]

I'm not sure what abbreviation this is... it was the Gliadin Iga Abs2. It was a 329 with a moderate/strong positive being >30. My IgA was 144 with the standard range of 91-414 and the Transglutaminase Iga was <2 with negative being 0-3. I think that last one is the tissue one? 

 

Your IgA of 144 was the control test.  You want that in range so your other tests will be accurate - looks good.

 

Transglutaminase IgA is the tTG IgA.  Yours is negative but it has a sensitivity that can be as low as 75%, which means that it can miss up to 25% of all celiacs.

 

The Gliadin IgA Abs2 was most likely the AGA IgA (anti gliadin antibodies) which is the older test that tends to miss celiacs... looks like it caught you though!  Ten times above the normal limit is quite positive!

 

I don't know of anything that can cause positive results in this test, besides celiac disease, except that SOME doctors believe the AGA tests can catch some cases of NCGS (non-celiac gluten sensitivity).  A strong positive is usually a sign that it caught the disease it was made to catch: celiac disease.  If you do some research you may find others, but it looks like celiac disease to me.

 

.

[kadege]

Your IgA of 144 was the control test.  You want that in range so your other tests will be accurate - looks good.

 

Transglutaminase IgA is the tTG IgA.  Yours is negative but it has a sensitivity that can be as low as 75%, which means that it can miss up to 25% of all celiacs.

 

The Gliadin IgA Abs2 was most likely the AGA IgA (anti gliadin antibodies) which is the older test that tends to miss celiacs... looks like it caught you though!  Ten times above the normal limit is quite positive!

 

I don't know of anything that can cause positive results in this test, besides celiac disease, except that SOME doctors believe the AGA tests can catch some cases of NCGS (non-celiac gluten sensitivity).  A strong positive is usually a sign that it caught the disease it was made to catch: celiac disease.  If you do some research you may find others, but it looks like celiac disease to me.

 

.

 

Thank you so much!!! Also, I did read the rest of your first response and I guess I will have to stop eating out and eating the catering at work. Just verifying no gluten is obviously not enough. :/ After 6 weeks it is getting easier though so I'm sure it will continue to  

[nvsmom]

Happy to help.  

 

Don't write off eating out entirely.  While it is much easier to stay safe if you avoid restaurants, if you do some research on safe places to eat near you, especially higher end restaurants, you can still eat out with relative safety... eating in will usually be the safest choice though.

 

Glad it is getting better.  You'll be a pro by the time summer ends.