Could I Have Celiac Disease?

[Aurora87]

Hi,

 

    I decided to write this post today because I had an appointment at Columbia University's Celiac Disease Center scheduled for October 9, and the doctor's office cancelled it today.  I have been waiting since the end of August for this appointment and it will probably be several  more months before I can get another one.  So frustrating!

 

   So, I would love some community input.  I'm trying to figure out if I have celiac disease because my regular doctor would like me to go gluten free due to thyroid issues, but I know I can't get an accurate celiac diagnosis later if I don't get the testing now. 

 

    I was diagnosed with Hashimoto's thyroiditis when I was 16, in 2003.  I don't have diabetes, but my doctor says I have some signs of insulin resistance.  I have had issues with hypoglycemia my whole life.  I used to have painful periods to the point of passing out, but now I have a Mirena IUD, so I don't get a period at all.  I had hip surgery last year to repair a torn labrum.  It was torn due to a bone impingement, a malformation, not due to trauma.  I have some painful joints and I take Lyrica daily for some nerve pain. (and vulvar pain)  I was diagnosed with OCD at age 9 and I have dealt with depression and anxiety since then.  As far as "classic" symptoms, I have had digestive issues for most of my life on and off.  It's usually not acute, but sometimes it rears it's ugly head. 

 

    I tested positive on the genetic test for celiac disease (HLADQ2).  However, I haven't tested positive on any of the blood tests.  Part of the problem is that I have an IgA deficiency and also deficiencies in IgG subclasses 2 and 3.  I also have deficiencies on But here are my results (keeping in mind the deficiencies):

 

*transglutaminase IgA, Ab = 0.2

*transglutaminase IgG, Ab= 0.9

*anti-endomysial= less than 1:10

*gliadin, IgG, Ab= less than 0.4

*gliadin IgA, Ab= 0.2

 

     I am low in vitamin D and borderline low in zinc and CoQ 10.  I was high in ammonia if that means anything.  I know that some people get positive biopsies after negative blood work, but I don't want to bother if it's not likely that I have celiac.  I also know that many people go gluten free without an official diagnosis, but I don't think I have the discipline to do it without one.

 

      Any thoughts?  I would really appreciate any feedback that you can give me.  Thank you!

      

[cyclinglady]

I have Hashi's and going gluten free has not helped my thyroid. I had some wild swings going from hyper to hypo but not sure if it was related to celiac disease or menopause as both happened during the same time period.

I would try to get another appointment for a biopsy and a celiac consult, but let's see if others chime in about your test results. I am not an expert in that area.

Good luck!

[SMRI]

Why did the clinic cancel your appointment, because of your labs?  If so, call them back and make sure they know you are IgG and Iga deficient.  

[Aurora87]

Thanks for your replies!  I actually just made an appointment with another doctor at the same center for the middle of October.  The first doctor did not drop me because of my test results but because she had a scheduling issue. (although good though on the deficiency issue)  I tried to call several times to reschedule, but that doctor's office seems like kind of a mess.  Oh well, all's well that ends well.  

 

I forgot to mention that I also have fatigue issues as well.  It's such a part of my life that I forget it's not that same for everyone.  My whole life I have been "low energy" no matter how much i sleep.  I would love it if gluten was the cause, just to finally have a solution.

 

I'm not sure if a gluten-free diet will help my thyroid either, but my doctor said it has helped many of his patients.  I will wait to see what the celiac specialist says.  I have upped my intake of gluten in anticipation of a biopsy for the last month and I have had more acne, joint pain, and headaches, but it is hard to make a direct connection between the two.  I'm a lawyer, so I guess I really love "proof," haha.  

 

Thanks for all your help.