jaggirl47
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knitty kitty reacted to a post in a topic:
Need Help Understanding Mayo Results
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They don’t believe it’s cancerous, but he has a nuclear medicine study in 2 weeks I still don’t know how on earth the GI doctor missed that during the EGD
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Now just to throw in a little bit of confusion…. My son just had an upper GI fluoroscopy study last week and it confirms my belief that the EGD wasn’t as thorough as it should be. They found a mass in his stomach towards the duodenum, but it was completely missed on the EGD. In addition to only taking 2 samples from the duodenum, I’m a firm believer that ...
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Scott Adams reacted to a post in a topic:
Need Help Understanding Mayo Results
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I’m pretty sure it’s not NCGS. He has had issues since infancy, and has suffered from anemia for 20 years. He had severely delayed growth, and his mature height is 3-4” less than his genetic height should be. We know he has anemia from malabsorption. I’m thinking a second opinion with more samples may be needed. Regardless, he is now on a gluten free diet. ...
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Scott Adams reacted to a post in a topic:
Need Help Understanding Mayo Results
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My son’s biopsy results were posted this morning, and I am still frustrated. The GI doctor only took 2 samples from the distal duodenum and 2 from the duodenal bulb. I thought the standard called for 4 from the distal duodenum and 1-2 from the duodenal bulb? Anyway, here are the results: Esophagus, both distal and proximal, 8 samples taken. Squamous m...
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We have had to deal with dismissive doctors his entire life, and it sucks. We do not yet have the biopsy results yet, those are due back this week. I was rather shocked that he would assume ibuprofen damage rather than celiac. Between the positive DGP IgG and HLA DQ2 tests, it’s a no brainer to me. My son doesn’t show the GI issues, but he has everything els...
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knitty kitty reacted to a post in a topic:
Need Help Understanding Mayo Results
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My son saw the GI doctor on Tuesday, and just had his biopsies done Wednesday. I wasn’t expecting it to happen so fast lol. A different GI doc did the EGD, and that doctor argued with us that DGP IgG does not count as a positive celiac test, only the TTG and IGA panels. He also said that if my son is staged by the Marsh scale, he doubts it is celiac a...
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My son’s PCP ordered the lab testing through Mayo, and it shows the results are following the cascade with regard to my son having a low total IGA. From what I am reading in the algorithm, he most likely has celiac or “pre” celiac. Results: tTG IGA <1.2 (normal <4) tTG IgG 3.4 (normal <6) DGP IGA <10 (normal <20) D...
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Confusion about testing
jaggirl47 replied to SammyProd's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
My son’s DGA IgG is positive and his tTG IGA is negative. He has suffered from anemia most of his life. He has now been diagnosed with “highly suspected celiac disease” and sees the specialist on September 26 to schedule his endoscopy for confirmation. -
My son now has an appointment for GI on September 26
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knitty kitty reacted to a post in a topic:
I think my son finally tested positive for celiac
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We are going to wait to change diet until he sees the GI and has a biopsy done. Right now I’m trying to find a GI specialist that goes off of more than just tTG and EMA test results.
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jaggirl47 reacted to a post in a topic:
I think my son finally tested positive for celiac
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I have not read the second link yet, but that first link explains so much! Especially in correlation with a potentially incorrect low tTG IGA but a rather high DGA IgG. This makes me even more upset that the previous doctors never pulled his IgG levels, and solely tested the IGA.
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Hold on, anemia can cause false negatives???
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knitty kitty reacted to a post in a topic:
I think my son finally tested positive for celiac
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I should also add that he is HLA DQ2 heterozygous
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His primary care wrote in the notes that while it was in the normal ranges, she wanted to see what all of the other results come back with. He may have had that test done. His tTG levels came back yesterday afternoon, and are as follows: tTG IGA <1.2 negative (normal <4 tTG IgG 3.4 negative (normal <6) if...
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It has been probably 10 years since I last posted, but my son now has an amazing GP who redid the celiac blood tests. His DGP tests came back with the following: IGA <10, negative IgG 47.5 HIGH (<20 normal) in addition, he also has anemia that is not caused by iron deficiency, and his B12 levels are normal, but at the extreme low end...