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Having A Hard Time Being Patient!


svroche

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svroche Rookie

I do not have much new to say, but this forum is great at encouraging parents who are going through the diagnosis steps!

It's been 1 week since our endoscopy, and I am just waiting for the results. There is a hotline I can call to request the lab report over the phone, but the doctor advised me to wait until my appt next Friday, so we can discuss the results face to face. Since the endoscopy "looked good" the doctor is "not betting" on it being Celiac, but he did ask me to really monitor my son's BMs during the time I am waiting. He "goes" about 3 times a day, ranging from soft formed to very loose and runny, so I am still suspicious that something is not right. Also, I weighed him last week, and he weighed in at 29.9 lbs; I was so excited that he might push 30 soon! (He is 4 yrs + 3 months). This morning he only weighed 29.3. I know it's only a few ounces, but he has been hovering at this weight since at least February.

I kind of want to just call and get the reports, so I can look up what it all means, but I am trying to "obey" and be patient! I'm so very curious if it is Celiac, and if it's not, ask what caused his Gliadin IgG to be positive. I feel like right now I'm diagnosing my whole family with any suspect symptoms of Celiac, but I know I should wait for my DS before I start considering testing my other kids (and me!)

Thanks for listening!

Sarah


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seezee Explorer

I think you should go ahead and make the call if waiting is making you anxious. This way you can figure out what questions you want to ask. If it's positive you can start setting up your kitchen and find out what documentation the school might need, etc., so you'll be prepared. My daughter's endoscopy looked fine too, but all the biopsies showed damage. I don't think doctors always get how difficult and stressful waiting for this result is.

KayakMom Newbie

My dd's doctor also said everything looked fine to the naked eye when she had her biopsy but the pathologist report said that she had fully developed changes in the spruce (so positive for Celiac). DD's results came back in 2 days. Call for the report- I did.

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    • Fayeb23
      Thank you that’s really helpful, hopeful won’t have to have a biopsy.
    • RMJ
      That means the normal range (i.e. not celiac disease) would be a result less than 14.99.  Your result is WAY above that. Some gastroenterologists would diagnose that as celiac disease even without a confirming biopsy because it is more than ten times the top of the normal range.
    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
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      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
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      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
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