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MistyRG added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Testing Post DiagnosisI read on the University of Chicago website about what you should be tested for each year after diagnosis. My doctor isn't very knowledgeable on Celiac, and I am coming up on 2 years since diagnosis. At my last appointment (which was the first since diagnosis), I asked her to run the testing again to see if my numbers look good. She ran a "Celiac Panel" (all the lab slip said), and when they called me with the results, they said it was negative and to keep doing what I'm doing. I don't have the report in hand yet, but I wanted to see if anyone knows if this is good news . . . or really no indicator?
I have been gluten-free for almost 2 years, but my family (husband and 5 kids) still consumes some gluten in the house. I am always worried about CC or the goldfish kisses from my kids!!! We eat out a few times a month, and, well, you can never be sure there!!! I just wanted to make sure I was definitely on the right track and healing.
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MistyRG added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseLab Results On My SonI was diagnosed in June, and I decided to get my oldest 2 kids tested. My daughter (5) has complained of stomach pains and issues for the past year. My son (9) has no issues. Ironically, her tests were all normal, but my son's tests came back abnormal.
Being new and not really doing anything but asking the pedi to run a celiac panel, I didn't know what they ran. (I can't find my lab slip to see what was run on me!) Here are his results . . .
Immunoglobulin A (IgA) <7 (normal is 33-202)
Endomysial IgA <1:10 (normal <1:10)
TTG IgA 1.1 (<4 negative)
His only abnormal test is the first one, which is really low. His pedi called a pedi GI specialist who said the low IgA will throw off the other 2 tests, and they asked her to run the IgG tests. So we are waiting on those results.
Everything I have read say that a low IgA can increase their chance of developing an autoimmune disorder, and since mom has Celiac, it's not a reach to figure that out!!
I am very anxiously waiting on the other results. I just wanted to see if anyone had more experience and information on this while I patiently wait!!!
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MistyRG added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Retesting . . .Do you get retested to make sure you are healing your body after going gluten free?
I don't have a lot of symptoms or issues. Yet my biopsy came back "severely damaged." So I am wondering if my doctor should retest my blood work or something to make sure I am on the mend and not eating hidden gluten since I may not even know.
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MistyRG added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsAna - Anti Nucleur AntibodiesAnyone have an idea on this one?
Of the Celiac panel, 3 of my 5 tests were positive. Endoscopy is positve. So I have Celiac.
However, during the wait, I had my rash biopsied. It came back negative for DH but could be 4 other issues including lupus. So they ran an ANA test on me.
Negative is < 1:40
Mine was extremely positive at 1:640
I am out of town and can't see my doctor for a few more weeks. I am hoping this has something to do with Celiac, but I am now being referred to a rheumatologist for futher testing.
I'm hoping it's just Celiac related . . . otherwise I feel like I may be falling apart!!!!
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MistyRG added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)It's Official . . .I got the results back from my endoscopy, and I do have celiac. I am relieved that I wasn't crazy!! I am VERY thankful to have a great team of doctors that listened to me and ran the tests I requested without question!! I am extremely lucky that my diagnosis took only 2 months from rash to positive diagnosis (though rash is negative for DH! Go figure!!).
So I am officially here . . . and it really hasn't been as difficult as I thought it would be!!!
Oh . . . and I wake up feeling RESTED for the first time in years!!! I used to blame it on my kids . . . guess it was just the gluten!!!
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MistyRG added a topic in Dermatitis HerpetiformisNegativeWhile waiting for my endoscopy, I had 2 biopsies of my rash. Both came back negative. Actually, one came back with 4 other possible issues, and they ran some more labs.
But I don't believe it!!! The rash was the reason I started this "could I have celiac" journey. I do have a positive intestinal biopsy. So celiac is confirmed . . . I just can't see how this rash could be anything OTHER than DH!!!
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MistyRG added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsBiopsy TodayI had my intestinal biopsy done today. Preliminary report is that everything looks normal. I should be happy, but I am confused! I know we have to wait for the results for a definitve answer, but I guess I assumed they would see something.
Has anyone has a normal looking preliminary result followed by a positive biopsy?
I am also waiting on biopsy results of my rash. Is it possible to have the rash positive and maybe too early for intestinal issues?
I had 3 positive blood tests, including a positive EMA. Everyone says that is celiac specific showing damage, which is why I am confused with the "normal" report.
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MistyRG added a topic in Gluten-Free Diet & Weight IssuesJuice FastI haven't officially been diagnosed. Waiting on biopsy results for DH, and my endoscopy is Monday. But everything points to Celiac . . .
So, I am thinking about doing a juice fast to jump start my body (in weight AND health) and get it ready for the whole gluten free lifestyle. Because I plan on making a lot of dietary changes, I figured this would give me a head start.
Anyone ever tried this? I am thinking 10 days to start . . . we'll go from there!!
(Can you tell I just watched Fat, Sick, and Nearly Dead???) LOL
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