7 months later still antibodies present.

[Cheerymarie]

So aside from the title, I’ve still been experiencing diarrhea, and severe abdominal pain. The gi said she thinks I have ibs d. I’m worried it might be refractory celiacs. I’ve gone 100% gluten-free for these 7 months as I feel like s$#& and want to be well. I’ve changed my kitchen tools, pots, pans etc. I have also changed all my beauty products to gluten-free ones, including lotion, makeup, shampoo etc. I don’t eat gluten and I don’t even eat out or at others houses. I don’t understand why I still have the antibodies.

 

My ONLY idea is maybe a course of antibiotics I took for mouth surgery (military isn’t very nice about my celiacs and wouldn’t change my medicine even if it said “contains wheat” on it so I didn’t Nima test it. Although that was 7 days and I felt the same dying the period I was on those as I did these last 7 months. I have been glutened early into my time so I know how that feels for me so I really don’t think it was the antibiotics.

 

Either way I still feel like crap and was wondering if anyone has some insight. At this point I’m like dang I should just eat gluten it wouldn’t be any different ( I def wouldn’t but I laugh about how it wouldn’t change things for me)   

[cyclinglady]

2 hours ago, Cheerymarie said:

So aside from the title, I’ve still been experiencing diarrhea, and severe abdominal pain. The gi said she thinks I have ibs d. I’m worried it might be refractory celiacs. I’ve gone 100% gluten-free for these 7 months as I feel like s$#& and want to be well. I’ve changed my kitchen tools, pots, pans etc. I have also changed all my beauty products to gluten-free ones, including lotion, makeup, shampoo etc. I don’t eat gluten and I don’t even eat out or at others houses. I don’t understand why I still have the antibodies.

 

My ONLY idea is maybe a course of antibiotics I took for mouth surgery (military isn’t very nice about my celiacs and wouldn’t change my medicine even if it said “contains wheat” on it so I didn’t Nima test it. Although that was 7 days and I felt the same dying the period I was on those as I did these last 7 months. I have been glutened early into my time so I know how that feels for me so I really don’t think it was the antibiotics.

 

Either way I still feel like crap and was wondering if anyone has some insight. At this point I’m like dang I should just eat gluten it wouldn’t be any different ( I def wouldn’t but I laugh about how it wouldn’t change things for me)   

Antibodies can be elevated for over a year.  The important thing is to see them in a downward trend.  Know that gliadin antibodies were designed for helping to diagnose celiac disease and not for follow-up care.  The problem is that they are the only “tool in the toolbox” that is not evasive.  That is why doctors use them.  

I had three courses of antibiotics for a tooth extraction due to an old root canal that had gone bad 1/2017.    All my antibodies were up (including thyroid) and I developed chronic hives which always started with abdominal pain.  I eventually went on the Fasano diet for a few months, but still felt bad.  I finally caved and got an endoscopy.  Even though my DGP IgA was still very elevated, my endoscopy revealed healthy villi!  You could see it on the scope camera.  Biopsies confirmed.  But....they found chronic autoimmune gastritis that was not there when I was initially diagnosed.

Your current issues could be related to some hidden gluten or you are still healing (since seven months is still pretty early in the game),   or you could have another issue.  It is way too early to consider refractory or even non-responsive celiac disease in my non-medical opinion.  

[tessa25]

As long as  your blood test numbers keep going down your doing well. If they are not going down yet you could try a Fasano diet and monitor things yourself by ordering your own blood tests. Your insurance doesn't cover the cost of ordering your own blood tests though. If you're interested in details on how to order your own blood test just let me know. It cost me about $300 a pop. No cash discount there.

[ch88]

Do you eat oats?

[cyclinglady]

No oats for me.  Because I have  diabetes, I avoid grains as much as possible.