Would you scope again?

[CeliacMommaX2]

My 8 year old has had a TTG level that has only been negative once in 3 1/2 years (14, <15 is negative).  She has been up and down a lot and in the past year her TTGs were 22, 55, 19, 20.  Her EMA has been negative for about 1 1/2 years.  She is still underweight, but doesn't really have any clearly celiac symptoms even when we got higher TTGs over the years.  We're trying to decide if it's worth it to put her through another scope to see if she's healing despite (low) positive TTGs.  We are already a completely gluten-free household, homeschool, and almost never eat out, so I'm not sure what we'd do differently!

Thanks for all of your thoughts!

[Ennis-TX]

If you concerned about healing a scope would show if she is still taking damage or healing, along with give any ideas of other complications. Would I scope again, yeah, after a recent 3 month bout of returned symptoms and 2 glutenings I am curious of my set backs and if anything else is happening in my system.
 

[ch88]

The high TTG test is concerning. Since one of the tests was negative my guess is that there is still some cross contamination happening.

Here is a link for more information:

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Eating out even occasionally can be a problem as it can take a month or two or longer for antibody levels go down. If a flour or food is labeled gluten free, it is probably safe, otherwise I am skeptical of processed food. Some people also react to oats even if they are gluten free. 

[cyclinglady]

You are in a tough position.  

The TTG has been known to be elevated for several other illnesses.  

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It sounds like she is doing well on a gluten free diet since your home is gluten free, you rarely eat out, and she is pretty much symptom free.  I can relate to your frustration with the blood tests.  

I have learned that by activating my celiac disease (with gluten), I seem trigger (or develop) other autoimmune issues. 

Last year, I was sick.  It started with a tooth infection (failed old root canal), a couple of rounds of antibiotics (which I hope were gluten free, but not sure), the flu, and a cold.  At some point I was glutened.   I started developing all-over-my-body hives daily every afternoon besides my inability to digest even safe foods (e.g. became lactose intolerant again).   My DGP IgA antibodies were off the charts (never had a positive on the TTG or EMA tests and I am biopsy confirmed).  After six months my DGP IgA antibodies were still off the charts (as were my thyroid antibodies).  My GI wanted to scope me again, but I asked to go on the Fasano diet.  Three months later, I was still having GI issues and my DG IgA was still elevated.   I finally agreed to have the scope.  It revealed a healed small intestine but a damaged stomach.  I was diagnosed with autoimmune gastritis.  

So, I was doing a good job all along on the gluten free diet.  At least the endoscopy validated that I was diet compliant.  I have no idea what triggered my initial glutening as I rarely eat out (and only at dedicated gluten-free) and my house is gluten-free (hubby was gluten-free 12 years before my diagnosis, so I know the diet pretty well.) 

I share my story because she might very well be healed from celiac disease.  The blood  tests for celiac disease are good and not perfect, but they are the “only tool in the toolbox”  and are much less invasive.  If she is game, consider the endoscopy, it might just give you all piece of mind.  It did for me.