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Got The Diagnosis-Finally

SueQueBlue

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SueQueBlue Newbie
SueQueBlue
Posted

I had a EMA IgA test come back positive at the end of June, and had another upper endoscopy done last week. (I had one previously in Oct 2009 that was normal.) I got a call from my Dr. today-the biopsy of my small intestine came back positive for Celiac as well. So after a 18 months or so of misery, I finally got a diagnosis. I know that there is nothing medically anyone can do, but just knowing that it is a real problem, not just my imagination makes me feel a little better.

I'm sure I'll be hanging around here learning from all the experts!

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txplowgirl Enthusiast
txplowgirl
Posted

Welcome to the forums and should I say congratulations? :P

Seriously, Now you will be able to start feeling a lot better.

The only advise I can give you is start reading the threads and ask a lot of questions. We'll help you out.

Vicky

jerseyangel Proficient
jerseyangel
Posted

Welcome to the board! Let us know how we can help :)

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome. I hope you heal quickly. Ask any question you need to and read as much as you can. We sometimes have some ups and downs at first, hang in there if you do.

missceliac2010 Apprentice
missceliac2010
Posted

I'm sure I'll be hanging around here learning from all the experts!

Welcome, and o boy are you right about the "experts" around here! The advice is great, and the people are responsive and kind. Welcome, and I hope your first few weeks of gluten-free go well. When something comes up, as away!

Skylark Collaborator
Skylark
Posted

Welcome to the officially gluten-free club. I'm glad you got the firm diagnosis you were wanting. I hope going on the diet helps you feel a lot better!

LDJofDenver Apprentice
LDJofDenver
Posted

It's a relief, isn't it, to finally have a diagnosis - a reason! And as maladies go, at least celiac disease is treated by diet.

You'll have a bit of a learning curve at first, but you're on your way to healing.

Aside from the obvious, not eating gluten, there are things you need to watch out for. Be aware that

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    • lizzie42
      Confusion about my son's results

      By lizzie42 · Posted

      But yes seeing all those negatives does give me a bit of doubt! I feel confident but those results give me a seed of doubt. Especially since it's a lifelong diet for him! 
    • lizzie42
      Confusion about my son's results

      By lizzie42 · Posted

      When I originally posted I hadn't talked to the pediatrician yet and didn't realize about the budosinide. Now I feel pretty confident. I was concerned that all of the tests didn't come back positive - that seemed kind of ambiguous to me. I didn't realize that was common. Do a lot of people on here have a positive tTG but negative other tests? I thought the EMA was pretty "gold standard."  And yes I do now wonder about the asthma! I hope being gluten free will improve that! 
    • trents
      Confusion about my son's results

      By trents · Posted

      @lizzie42, So, I'm confused with what you are uncertain about. Do you really have any doubt that your 5 year-old son has celiac disease? Is it because he isn't exhibiting anemia and the rash as did your daughter? The genes are certainly there and the antibody testing certainly indicates celiac. And given the fact that he was on a reduced gluten diet and on a steroidal medication (which would likely suppress immune responses) do you really have any doubt? If you can't afford the GI consult with endoscopy/biopsy, why would you consider a gluten challenge after removing the remainder of the gluten from his diet? Have you considered that his asthma and "sickness" may be tied to celiac disease?
    • lizzie42
      Confusion about my son's results

      By lizzie42 · Posted

      These are my sons results. My daughter was high positive on everything and maxed out the tests in addition to being anemic, bad rash, etc.  Yes, he has been eating mostly gluten free (not completely). He was also on a high dose of budosinide at the time of testing due to some asthma and sickness. I didn't realize that affects the results.  This test along with my daughter being so sick with it prompted the pediatrician to diagnose him. We can always do a gluten challenge in the future. We will do that with our 1 year old. We will have her eat school lunch when she goes to prek and then test after a couple months. 
    • trents
      Confusion about my son's results

      By trents · Posted

      @lizzie42, Are the results you posted above for your daughter or for your son? If these are for your 5 year-old son, they are strongly positive and definitely suggest celiac disease. The ttg-iga is the centerpiece of celiac disease antibody testing and at 59 it is a strong positive. If you are wondering why some of the other tests are negative, you need to know that is normal. Seldom are all the antibody tests positive on a complete celiac panel.
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