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jaggirl47

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Everything posted by jaggirl47

  1. jaggirl47
    They are supposed to be doing 2-4 each from the esophagus and stomach and 6-8 from the duodenum.
  2. jaggirl47
    After 2 months of being back on gluten my son's biopsy day has finally arrived. They are doing biopsies of the esophagus, stomach, and the duodenum to check for EE, EG, and celiac. My son did ok on his gluten challenge but we did have a huge difference (for the worse) in his attitude and behavior, as well as zero growth and increased frequency and severity...
  3. jaggirl47
    Not at this time. They only ordered labs at this point.
  4. jaggirl47
    My son had his follow up with the GI doc today. He is scheduled for his endoscopy May 6. We restarted gluten on March 11 so that will have him at 2 months on gluten. He has not grown at all since going back on gluten but he did gain 2 pounds. My younger son (10) also had blood drawn today for a celiac panel. We have been fighting what the doctors assumed...
  5. jaggirl47
    There is a full breakdown of my son's test and what each thing means in here. https://www.celiac.com/forums/topic/111160-please-explain-the-genetic-test-results/
  6. jaggirl47
    I will find my thread and paste it in here. When the test says negative for the DQ2 and DQ8 high risk alleles it just means that you do not carry the full gene but may still carry half.
  7. jaggirl47
    After 8 years we are finally getting somewhere. As much as I don't want my son to have celiac, at the same time I do want the diagnosis because that means we found the problem. I hope that makes sense.
  8. jaggirl47
    We did the gene testing because the celiac panel our hospital does showed him negative. He didn't have a good panel though. They only did tTG IgA and IgG and the AGA IgA and IgG panels. They didn't do (and refuse to) the DGP tests or the EMA test.
  9. jaggirl47
    I just got off the phone with my son's GI. He apologized for not reading the results properly and consulted directly with the lab himself. We went over the history I was able to get from my ex as well. While going over the CBC results that show anemia, he said that even though the iron panels came back normal he feels my son most likely has iron deficiency...
  10. jaggirl47
    It's not that I'm not satisfied with his response to my son's issues. I'm not happy with the fact that he failed to read the genetic report and gave false info to me. As far as seeing other doctor's, it has taken 8 years to even get a GI referral. From the first appointment the GI doc said he can look at my son and see he has malabsortion issues. Yes, it...
  11. jaggirl47
    I do know that with my son's DQ2.2 gene he has the beta chain most responsible for gluten intolerance. The alpha chain not so much. The risk the lab gave him for celiac with the genes he has was 1:210. He is getting an endoscopy. BTW, it's always the ex-husband's fault lol.
  12. jaggirl47
    We go back April 6. Supposedly the doctor is going to call me back today. I reached out to my ex-husband yesterday to try and get genetic info from him. The info I managed to get (he is adopted but does know his bio parents) is that his dad has juvenile onset type 1 diabetes and "random issues". His mom denies anything other than bi-polar. My ex informed...
  13. jaggirl47
    The problem I have with the doctor is when he called me yesterday, he said my son was negative for ALL genes related to Celiac. He looked at the portion where it said my son was negative for DQ2.5 and DQ8 but completely missed what he did test positive for. I had the report right in front of me and when I commented that he wasn't negative for all genes I...
  14. jaggirl47
    OK, I just got off the phone with the lab for help understanding. This is what my son tested as: DQ2A DQA1 01:02 DQA1 01:08 DQA1 01:09 DQA1 01:11 DQA1 02:01 DQ2B BQB1 02:02 DQB1 02:12 DQB1 06:02 DQB1 06:84 DQB1 06:109 DQB1 06:111 DQB1 06:113 DQB1 06:114 DQB1 06:115 DQB1 06:116 DQB1 06:117 DQB1 06:127 The way the lab explained...
  15. jaggirl47
    That doesn't give any info on testing positive with 1/2 gene though on the DQB1 gene.
  16. jaggirl47
    This is the genetic report: DQ2 (DQA1 0501/0505, DQB1 02XX) Negative DQ8 (DQA1 03XX, DQB1 0302) Negative Final results: DQA1*02: ARSW, 02:01 DQB1*02: YE, 06: ABUXJ Code translation: YE 02/12 ARSW 02/08/09/11 ABUXJ 02/84/108/111/113/114/115/116/117/127 The patient is positive for DQB1*02, one half of the DQ2 heterodimer. The GI doc just called...
  17. jaggirl47
    I just went and picked up a lot of labs from our hospital to try and compare results. Unfortunately, they only gave me his CBC from 2014 and I wanted it back to 2006. I am trying to compare his results. However, the CBC from September 2014 is as follows to compare with his March 2015 test. Wbc 5.9 Rbc. 5.2 Hgb. 12.8L Hct. 38.4 Mcv. 73.9L Mch...
  18. jaggirl47
    I am so glad to see mouth ulcer posts. I was going to post about them. My oldest is going through testing right now and both of my kids get mouth sores. We just went back on gluten to get my oldest prepped for endoscopy in 1 1/2 months and I ended up with mouth sores again within 2 days. I always thought it was due to teeth grinding (they are on my cheeks...
  19. jaggirl47
    He had mucous on both September and January UA's so that's 2 in a row. They didn't specify the amount, just that it's there. GI wants to do an endoscopy regardless. He feels that if my son doesn't have celiac, he has some other malabsorption issue. We go back at the beginning of April and my son will get scheduled an endoscopy at that time. We are looking...
  20. jaggirl47
    The platelet was a mistype and I accidently put in an additional 1. Thank you for pointing that out and I apologize! His platelet count is 161, not 1161. I always tell my kids to proof read and I totally failed on that! For the mucus, he isn't in puberty yet. Hasn't even started it. Would that make a difference on whether there is mucus or not? The...
  21. jaggirl47
    The thalassemia was completely ruled out in infancy for him. My younger one had to be tested twice but this one was a conclusive no. Who knows though. I know I suffer from iron deficient anemia frequently. I am very impatient for the ferritin to come back. We dropped the stool sample off this morning and I have 2 more weeks to wait on the genetic tests...
  22. jaggirl47
    I haven't received the ferritin results back as of yet so I am interested in seeing what the result is compared to the rest of his panel. I hate waiting!
  23. jaggirl47
    I would agree with that if he didn't test negative during his screenings. That was one of his required newborn screenings before leaving the hospital.
  24. jaggirl47
    We received the blood work the GI ordered for my son on Monday, except for the genetic test which will take a couple more weeks to come in. The link to my original post with his other labs will be added at the end of this post. Please assist in digging through the results so I know what I should speak with the GI about at our next appointment. CBC WBC...
  25. jaggirl47
    The GI doc thinks there is a good chance my son is seronegative. Just by looking at my son the GI said if he doesn't have celiac he thinks there is a different malabsorption issue we are looking at. When you look at an almost 14 year old boy going into high school next year that weighs in at 78lbs and just hit 4'10" where every rib and vertebrae are clearly...
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