Looking for insight amd asvice please.


My 5yr old son was dx 6 months ago with Type 1 Diabetes so in Sept they did a whole pannel of blood tests for other auto immunes. Got the call he tested positive for celiac but that was all they said. Had his appointment with the gastro yesterday and they said that they test the TTG levels, and anyone who tests greater than 4 they will go ahead and do an endoscope to confirm dx. Well my sweet boys TTG levels were over 100. The team of doctors at texas childrens hospital said they’ve never seen levels this high before. As well as some other “alarming numbers” but wouldn’t go into detail until the do the actualy biopsy. So in 2 weeks he goes in for the procedure. I know he will be under anesthesia, which terrifies me from him fasting (remember newly dx T1D so his BG drops randomly and quickly) but also said they will take samples from several parts of his stomache as well as both intestines. I guess I’m just wondering if he will feel any of this once he wake up since they have to take several peices to test, or not at all? And also the on call Fellow mentioned since he is so sever that it’s best to not have any gluton in the house what so ever because even cross contamination can make him sick. My husband and I are all on board with making changes as a whole family, but am worried about where to even begin….

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Alyssa 4 years 17 Answers 515 views 0

Answers ( 17 )

  1. My adult daughter was recently diagnosed type 2 (which I know is different than type 1) just had the procedure three weeks ago….she did fine with the prep with her numbers (sugar) and also felt nothing from the biopsy…good luck to all of u!

  2. I didn’t put my 9 year old through the biopsy. Her numbers were high and she had the gene. Her Grandmom has Celiac too so we just sent GF and her numbers came down to under 4 and she feels great.

  3. I just got my blood results back and they were over a 100.

  4. My daughter went to her first GI appointment yesterday, she’s also a type 1. We contacted her endo and he told us how to handle everything. She has her endoscopy done this coming tuesday. Make sure to talk with the GI and endocrine doctors they can answer all of your questions and try to help you alleviate some of your fears.

  5. My 11 year old just had the biopsy 2 weeks ago. Felt perfectly fine once awake.

  6. Don’t go gf until all Testing is finished

  7. I’m sorry he has to go thru this. Education and lots of questions of the doctor and anesthesiologist

  8. Have him eat gluten until the tests are done. Typically theu give the kids a giggle juice to make them groggy before they take him from you. At Children’s Hospital theu give gas first and then IV. When they wake up they are a little drunk amd sleepy from anesthesia, but they remember nothing at all. There is no pain from the biopsy. They had to intubate my daughter because of airway issues. She remembers nothing and only had a sore throat for a few hours from intubation. I recommend having the testing done to confirm amd provide details on any damage he has. Is it so bad that he has really poor absorption? Then you need to closly monitor vitamins. Its just good to know. You’re on the right track and once you get the hang of it it is really not hard. Good luck.

  9. Get him on a Dexcom ASAP, if you haven’t already. Then you can monitor BG while he is in the procedure.

  10. Please ask for Peds RD consult who specializes in GI

  11. Nope i woke up and went to eat a big burger lol f8rst thing no pain exsept a very raw bum from wiping during prep put the vaseline or oil on it before starting prep

  12. Both of my kids tested in the 130’s. One was 132 and the other was 139. They monitor them very well, and especially with the diabetes, they will make sure the levels are good before and after the procedure. The bx cannot be felt afterward. I know it is scary, my husband and I and two of our kids have had the testing and no pain after.

  13. Only prep I had for a morning endoscopy was to not eat after midnight the night before. No pain or discomfort at all from the test itself.

  14. My sympathies to you. My 11 year old us a Type 1, she has been for 4 years. She is tested every year for celiac. Good luck

  15. I’m a fellow T1D parent. My son is older and was dx 2 years ago. Have you looked into a Dexcom for him? My son has dramatic swings in BG also. He’ll go from 300 to 40 very quickly, and the dex has been a life saver. My son had his wisdom teeth out a year ago and I was really nervous, as was the Drs. They wouldn’t sedate him because his has chronic airway obstruction, they weren’t worried about the T1 as much. I was able to watch his dex while they were doing surgery and it gave me peace of mind. Is he honeymooning ? That will cause dramatic swings in BG.

  16. Mine were high too I opted not to do biopsy and just heal my gut get a panel to see what his vitamin levels are mine were like nonexistent .. I started in B 12 shots … Lots of quality vitamins I am now healthy and healed

  17. My 3 year olds levels were 158 and we were told that she should continue to eat gluten daily until the biopsy. They scheduled the biopsy within a week. She’s had multiple surgeries before so I was worried but it really wasn’t bad. It was our easiest surgery yet. My husband has Type 1 and she will be watched even more closely for it now. I second looking at a Dexcom – it was life changing for my husband. Good luck. We are about a month into our new celiac life and I still have days where I feel overwhelmed.

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