How sensitive?

[ebutton]

I was diagnosed in January of 2016 with Celiacs by a blood test and a endoscopy. Over this summer, I drank 4 Redd's thinking they were gluten free and didn't get sick. Recently, I found out a meal I get almost weekly is also not Gluten Free. I've never gotten sick and when my blood was tested recently, my levels were nearly perfect, showing I had no gluten, when I had.  Is there another sort of autoimmune disorder that I could have that is similar to celiacs? Or could I just need to have a ton of gluten in order to get sick? 

[trents]

Good questions and there are not necessarily definitive answers.

First, many true Celiacs are asymptomatic or have very minor symptoms in reaction to the ingestion of gluten. That doesn't mean there is not damage to the small bowel villi going on. They are finally diagnosed as having Celiac disease usually because other things are getting out of whack with their blood values or physiology such as anemia, elevated liver enzymes or osteoporosis. So then they get tested for Celiac disease and find out that it is the underlying problem.

Yes, there are other autoimmune diseases that can mimic the damage to intestinal villi we typically see in Celiac disease.

Also, the Celiac antibody blood tests can give false positives.

I would not assume you do not have Celiac disease just yet but I would get retested at a later date and I would also press for more investigation of why your endoscopy results showed villi blunting.

[cyclinglady]

Look at me.  Antibodies off the charts.  Every single time I went in to my GI over the past five years.     So discouraging,  yet my small intestine has completely healed (repeat endoscopy 1/2018) .  I talked to Melinda Dennis, RD who works out of Beth Israel in Boston recently.  She said that at their Celiac Center they have found that the antibodies testing does not necessarily match with intestinal damage post diagnosis, but it is the only tool in the toolbox for now (excluding biopsies).  

Why were my antibodies elevated?  I did have some gluten exposures, but who knows why they continue to be elevated?  I am blaming other autoimmune issues (Hashimoto’s, autoimmune hives and gastritis), but I have no proof.  

Here is another observation.   I think I have had celiac disease for decades.  I would have tummy issues that would come and go.  I lost my gallbladder because it became non-functioning.  I have been anemic all my life (two anemias).  I developed Hashimoto’s 20 years ago.  Symptoms ebbed and flowed.  Celiac disease is like a chameleon and my body just adapted.  Dang,  I used to do Triathalons in my 30’s and century rides until I hit 50 and the anemia became too severe.  

When I  was diagnosed, I was pretty anemic by then.  Could not swim hard or run fast.  It finally caught up to me.   I did not have any GI issues at that point.  

So....be careful.  You  do not know if you are doing intestinal damage or not.  People with celiac disease need better aftercare!   We know that only 20% of celiacs are actually diagnosed.  The other 80% do not know.  Get them diagnosed and we might stand a chance on getting enough attention for research funding!