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Celiac Disease Without Symptoms?

Discussion in 'Parents of Children with Type 1' started by funnygrl, Aug 15, 2012.

  1. funnygrl

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    Has anyone ever heard of somebody being diagnosed with celiac without really having any symptoms? I'm a little worried I might be getting that diagnosis tomorrow. I can eat wheat without any problems, though!

    It's a long story, but 10 years ago I was in high school and was having GI issues, throwing up, losing weight, minor bleed in my esophagus. I had an endoscopy at that time and ended up just being diagnosed with reflux disease and put on medications for that. Later, they also added a diagnosis of gastroparesis, and I was on medications for that too for awhile, but eventually I went off of those. Because of the GERD, they have been doing endoscopies every 5 years and I still see GI 1-2x per year.

    Looking over my records last winter my GI doctor noticed a biopsy I had done as a teenager showed something weird. It was previously considered just to be unusual, but not of any concern. Later it was identified as being associated with Celiac disease. The strange part of this? The biopsy was taken from my esophagus, not my small intestine like where you would see Celiac. Because of this she decided to do testing for the genes associated with Celiac. She tested for two genes. I was positive for one of them, but the one I was positive for is very common with type 1 diabetes as well, and not all that unusual even in healthy people.

    2 weeks ago I had another endoscopy. I had an appointment scheduled for this week to go over the results, but at the endoscopy appointment the doctor told me just to cancel it because "It looked totally normal, but we did a biopsy for celiac anyway, just to make sure, but if you have that we'll just call you and tell you to go on a gluten free diet."

    Tonight I got a phone call from that office asking me to call them about my test results. This office doesn't historically call with negative results, but maybe for scopes they do?

    Right now I feel very healthy and really haven't had any GI problems, so I would be really surprised if this came back showing Celiac. Heck, I had pizza today and felt fine!
     
  2. sooz

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    I don't have any light to shed, just want to say that I hope it won't be anything serious. Good luck.
     
  3. C6H12O6

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    I would think you would notice your post meal blood sugars were easier to control or more lows. I think it would be hard for a conscientious type 1 to not notice any changes to their insulin needs.
     
  4. MomTo4Girls

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    First, I hope that it is nothing for you and they are just calling back to ease your mind :)
    ]
    But my DD was diagnosed with celiac without having any real symptoms. She had weird ones like she was shorter, had rough, dry skin on her hands and stinky feet :p

    But none of the typical celiac symptoms... last night someone accidentally gave her an oreo and no reaction whatsoever.

    My Aunt has celiac and doesn't know she has come in contact with gluten until weeks later when her iron level plummits. I guess it is a situation where your disease may vary...
     
  5. KylesMom

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    My son was diagnosed with celiac a few months ago even though he has never had any obvious symptoms. His endo ran bloodwork to check for celiac because Kyle was having days with unexplainible lows that were very slow to rise, and he needed very little insulin sometimes. The bloodwork indicated that he had celiac (he had a very high level of certain anti-bodies) and he also had the endoscopy done to confirm. The endoscopy was normal visually, but the results of the biopsy were not, and confirmed the celiac diagnoses.

    The GI Dr. Told us that it is not unusual to have no outward symptoms for many years, but the disease is still doing damage. He also told us after eveything "looked" fine during the endoscopy that he rarely sees anything abnormal visually. That more often than not the biopsy is what comes back abnormal and confirms celiac. So his experience sounds similar to yours. I talked to another Mom whose son has celiac and she said he didn't have GI symptoms at first either, that he was tested because he was not growing or gaining weight as he should have, and that he was just very tired all the time (because the celiac was preventing his body from absorbing his food). A co-worker of mine was dx with celiac and her only symptom is that she gets terrible headaches when she eats gluten.

    My son has been gluten free for 6 months and it is very hard to explain to him why he has to avoid these foods that never made him feel bad when he ate them. We just had a follow-up with the GI doctor and he re-ran the bloodwork. The antibody levels are now normal, where as they were extremely high 6 months ago so that made me feel like the GF diet is working.
     
  6. Meredithsmom

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    We, too, had a celiac diagnosis without any symptoms. I fought it tooth and nail, but it was there. Meredith has been gluten free for almost a year. Her biopsy looked normal but the pathology came back positive. Still no symptoms even if she is accidentally exposed to gluten.

    It's a doable diagnosis. Just takes some time and a new way of thinking.

    Hoping for the best.
     
  7. Caldercup

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    Both my son and I were completely asymptomatic - no growth issues, no bowel issue, no skin issues.

    If they hadn't done the bloodwork at his T1D diagnosis, we never would've known. (I found out after going GF with him as a solidarity move -- a bit of cross-contamination and I was up and terribly sick all night. Bloodwork done five months after going GF and I was still above normal.)

    Now that we're totally gluten-free, the slightest bit of gluten from cross-contamination makes us both really ill.
     
  8. Charlotte'sMom

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    A friend of mine has a daughter with T1. They did routine testing and found she also has celiac. So they tested the entire family and found one other DD with celiac as well. I asked her once if she could tell if she had eaten gluten and she said no. As far as I know they've both been asymptomatic.
     
  9. funnygrl

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    Thanks for the replies everyone! Fortunately, they were just calling to tell me that everything was fine and normal.
     
  10. sooz

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    Wonderful news!
     
  11. Sarah Maddie's Mom

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    That's great.;) I have it - it's not horrible, but it does make life more complicated. Glad your's was negative.
     

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