Celiac all in the family? We’ll find out soon.

Even though some of you know this because I say this on my “About” page, but many of you still may not.  I don’t have celiac disease.  But I write, research and speak passionately on the subject because my daughter, brother and dad all have it.  

Celiac runs in the genes.  So with all this history, it dumbfounds me  why I don’t have it.  Or do I?  I have a rich history of other autoimmune disorders in my family as well.  But so far, I have not been diagnosed with anything.  I should be thankful…

It might sound creepy, anxious or something else when I say, I think about this often.  I worry that if I have undiagnosed celiac disease, I could end up with several related ailments like osteoporosis or rheumatoid arthritis in 10-20 years.

I don’t have GI symptoms.  But I do have a few of the other 300 or so symptoms that could be related.  I have always tested negative for the celiac blood test — but we know while the test is good, it not 100% accurate, which is why the biopsy and endoscopy of the small intestine is considered the gold standard in diagnosis.  The scope is something I have never had.

So what are the next steps for celiac disease tests?

This week I met with a physician’s assistant with a local gastroenterology clinic in Minnesota. I had my personal medical history ready to go, as well as my family’s medical history.  I explained my concerns about my family history and that I want to be sure my previous celiac disease tests (serology) is correct.  

After listening, the PA told me because of the strong family history and some of my own concerns about symptoms, she would get me in for a biopsy and endoscopy.  What?  I was shocked! I thought for sure it would take more convincing!  After my office visit, I had the celiac panel done and blood work to check on my vitamin and mineral levels.  That was a single blood draw into three different vials.

The biopsy is scheduled for Thursday, September 18th. (Click here to read more on my experience with the biopsy). If you are going through the same thing, or might be going through this, feel free to follow along here as I document my experience.  

I am nervous about the endoscopy.  The idea of having a tube sent down my throat and not being totally “knocked out” freaks me out a bit.  When my daughter had it she was 15 months old and they did full sedation in the hospital.  So why go through all of this and why not just go gluten free? I need to know if I have an autoimmune disease.  Because if I do, it changes everything if I want to stay healthy for the rest of my days.

If you have already been through this, feel free to leave any tips in the comment area below.  

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9 Responses to “Going Through the Celiac Disease Tests, Part 1”

  1. I had my endoscopy when I was over 30. And I don’t remember a thing of what happened in the testing room! I may have not been totally knocked out, but it very well felt that way! I didn’t have time to be nervous and I was just so happy to have a diagnosis (my biggest fear was that I would be in terrible pain the rest of my life without the doctors figuring it out!). You’ll do great!

  2. Thanks for the insight Jessica!

  3. You will so much happier knowing for sure. Going gluten-free isn’t the worst thing in the world, but at the same time why inflict it on yourself if you don’t have to? Enjoy this time of eating lots and lots of gluten, and enjoy all of your favorites now just in case you have to give them up. (I miss Friday fish frys the most…)

    As far as the procedure, you really won’t remember any of it. When I had mine, one of the nurses mentioned to me how quick the procedure actually is–like 5 minutes. So even though you won’t have any memory of it, it may make you less anxious to know that you’re only out for a very short time.

    Be sure to have someone with you afterwards when the doctor comes to talk to you about what s/he saw. Mine talked to me while I was still groggy and I have no idea what he said to me.

  4. Great info & thanks for your support Kate!

  5. I don’t know which I was more nervous about – the endoscopy or finding out if I really was celiac. My Dr. and nurse were wonderful. I was “nicely sedated” and I would bet you will be, too! In fact, when it was over and the nurse was trying to “wake” me, I was irritated because it was a nice snooze!

    My Mom, son, niece, great niece, and great nephew are all diagnosed, just to name a few of my family….

  6. My son, 11, was diagnosed 2 months ago, and was put totally out. My blood tested positive, and my endoscopy was last week. I too was super fearful of not being totally out, and while the nurse was telling me how to breath, and swallow the tube, etc, etc I felt myself panic….I kept thinking “I’ll need to be put out for this”. But…I DON’T REMEMBER A THING after the doc gave me the drugs!!:) I agree with Kate…have someone there to hear the doc’s assessment. I felt groggy for about 12 hours, but I’m sure that varies with each person.

  7. I totally agree with Kate and Lynnea. Having been overwhelmed/ felt groggy by the experience of an endoscopy would make you not understand a thing or two of what the doctor just said. I went through surgery a year ago which they removed a cyst from my sinus, when I left the operating room awake (surgery took 2 hours and gave me general anaesthesia so I was asleep the entire procedure) they showed me the cyst and had no idea or recollection of how/what it looks like and barely remember anything that has happened right after. All I can remember now is waking up in my room. Good luck on the test and hoping all is well for you and your family.

  8. Hi Amy, I met you at the Orlando conference. I was wondering, did you test positive for any of the gentic genes? I have DQ8. But all other blood work is negative, except for low B12. I was just curious about yours. My Dr wants to biopsy me, but I have been GF since April, I see no need.

  9. Jill, I have not had the genetic testing. In part, because with my family history, I figure I am the carrier. All of my other celiac tests came back negative. The biopsy part will be tough for you because you have been gluten free for so long. You would have to go back on gluten for at least a month to attempt accurate results from a biopsy. Good luck! If I go through the gene tests, I will write about it for sure!

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