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jaggirl47

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Everything posted by jaggirl47

  1. jaggirl47
    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
  2. jaggirl47
    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 ...
  3. jaggirl47
    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. ...
  4. jaggirl47
    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...
  5. jaggirl47
    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...
  6. jaggirl47
    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...
  7. jaggirl47
    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...
  8. jaggirl47
    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.
  9. jaggirl47
    My son now has an appointment for GI on September 26
  10. jaggirl47
    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.
  11. jaggirl47
    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.
  12. jaggirl47
    Hold on, anemia can cause false negatives???
  13. jaggirl47
    I should also add that he is HLA DQ2 heterozygous
  14. jaggirl47
    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...
  15. jaggirl47
    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...
  16. jaggirl47
    Oh, I forgot to add that he had blood drawn for an IgE allergy panel today.
  17. jaggirl47
    From what I am reading GERD is below 10 with the vast majority being at 7 or below. Another tip off is that my son has had high peripheral eosinophils from the age of 3. I probably should have added that above. From texts, high peripheral eosinophils are seen in EE but never GERD.
  18. jaggirl47
    I will start off by first posting the procedure report then follow that with the biopsy results. I apologize ahead of time for the long post but I need help so I know what to say to the doctor next week at my son's follow up. Procedure Report: The 2nd part of the duodenum appeared normal. Four biopsies were obtained with cold forceps for histology...
  19. jaggirl47
    So, I got the call this afternoon that my son's biopsy results are back. I was given a copy of the procedure report this afternoon and I pick up the actual biopsy results tomorrow. All I was told today was biopsy showed GERD but not Celiac. So, going through the procedure report I am actually very angry. I specifically asked how many biopsies would be...
  20. jaggirl47
    We already went back on gluten free the day after his biopsy. They did biopsies of his esophagus, stomach, and the duodenum because we are not sure exactly what is going on. We know he has some sort of malabsorption, we just don't know what or where it's coming from. His blood work came back negative for celiac but when we did a gluten free trial, he grew...
  21. jaggirl47
    Look at having your vitamin D, calcium, and parathyroid hormone checked. Hair loss is a big symptom of parathyroid disease
  22. jaggirl47
    I know the doc said it would be 7-14 days but I have seriously chewed off all of my fingernails! How long did it take for others to come back? Today was day 6 (including biopsy day). I just really want to know what's going on with my son.
  23. jaggirl47
    Here are my thoughts. Your child's MCV and MCH levels were low which is an indicator of anemia. It does not matter if they were "just below" the level, they were still low. My son has had the same thing on his blood tests for the past 10 years and every doctor has ignored it until now with his current GI doctor. It is a sign of malabsorption. My son...
  24. jaggirl47
    We are finally home. The GI doc said it will take 7-14 days to get the biopsy results back. He did say that the duodenum and stomach looked good but also stated that looks don't mean anything until we get the biopsy results back. He did say there was some swelling and redness in the esophagus but he didn't see any real indication of it being caused by GERD...
  25. jaggirl47
    I will update you guys this afternoon when we get home.
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