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svroche

Having A Hard Time Being Patient!

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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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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.

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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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