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Waiting on my endoscopy

Jmaeki

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Jmaeki Newbie
Jmaeki
Posted

Hi everyone, i'm new to this whole celiac thing :).

It all started for us back at the end of May when my 12 year old daughter had to be referred to a Pediatric G.I. doctor due to some G.I. issues she had been having since she was a toddler.  I had been taking her to different doctor's to try to resolve her issues, and her current doctor wanted to send her to a Pediatric G.I. specialist since nothing we have tried on our end worked.

So we made the three hour trek to the closest children's hospital (we don't have any pediatric G.I. doctors here where we live), and the tested her blood for numerous things with celiac being one of them.  The doctor didn't think she had celiac since here symptoms didn't add up to a celiac diagnosis but she ran the test anyways.

Low and behold her TTG/IGA came back at 59 U/mL (the range for her is 0-3 U/ML would be normal).  So a few weeks later we went back to the hospital for her to have the endoscopy and she got the for sure diagnosis of Celiac.

I decided since it can be hereditary to get myself tested since my husband had tested negative in the past.  

My blood test TTG/IGA results came back positive at 128 U/mL (my range was 0-10 U/mL being normal).  I talked to my doctor about my results and at first she did not want to do the endoscopy on me (even though I was requesting it), she just told me to eat gluten free.  I had been planning on switching doctors anyways and this decided it for me.  So I made a appointment with a new doctor (but she was booked a month out) and decided I would just continue to eat gluten until I talked with her.  My old doctor called me to tell me she changed her mind and referred me to a G.I. doctor here in town.

So last week I met with the G.I. (who was very on board with me having an endoscopy) and my new doctor as well (who said I for sure need the endoscopy to see if I have celiac or am just gluten sensitive).  Regardless I will be going gluten free after my endoscopy (it's set up for tomorrow afternoon).

I decided to get my other kids tested as well.  My son's TTG/IGA  came back very high 830 U/mL.  I opted out of the endoscopy for him as even though hes 15 he would have to go to the pediatric hospital as well and I felt like since his results were so high that he would just go gluten free (which he has, and has noticed some very positive results because of it).

My 9 year old daughter tested negative.

My parent's both got tested and the were both negative.  They are getting the genetic test done at some point to see if they are carriers.  

 

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Fundog Enthusiast
Fundog
Posted

Hi, welcome.  You will find this forum to be very supportive. :)  Be sure to read up on the newbie 101 thread, which is pinned, and some of the older threads where there is a lot of very good advice given.  Cross contamination is really a "thing" and must be taken seriously, just as you would for a food allergy.  Avoid all those store bought processed gluten free substitutes for now, and focus on preparing wholesome, naturally gluten free meals from scratch.  Good nutrition is vital for good healing.  I make my own bread and pizza crust, and my own flour.  I found recipes that I love on Pinterest, so I don't really have to give up my favorite foods, if I plan ahead and put forth the extra effort.  Good luck!

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