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momma bee

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by momma bee

  1. Better if i just remove response wow!
  2. Thank you tarnalbenrry, I think putting it in writing is a good plan. I will try that tomorrow first thing in the morning. Kareng all I can say is "wow"! Negligent? Wow!
  3. Wow... Attempting to remove post
  4. Can't tell you the chances but can say my daughter was 15 months on diagnosis, blood tests were ALL negative but had sufficient IGA. Her endoscopy clearly showed multiple signs of celiac. So I would think with that then even one positive would be best to confirm. The scope itself is not that bad of an experience. She was drinking formula up until the...
  5. I think he is not ruling it out yet or he wouldn't be doing the biopsy. Fantastic they can get it done so quickly! The scope itself can show other issues she is having if there are other issues so it is useful for more then celiac. We were also told with our daughter being one year old the damage is less likely to be visual and after the scope the GI doc...
  6. Awww that sucks! Hugs sent your way! Definitely better for your little one but so hard to wait longer fingers crossed! And hug to you to feel better!
  7. That is great! Treatable! Hope resolves quickly!
  8. We had the same tests run here on our family once our littlest one was diagnosed and we all came back negative as well (but hers had been negative as well)... I am wondering too if more tests need to be run to be sure! Seems odd and a bit un-nerving! Good luck and let us know if they agree to run more tests in you all...I am thinking when finally meet...
  9. My little one was 16 months for hers and I was not keen on it, she was having adenoids out as well, but to be honest she did way better with it then my 3 year old! As mentioned, harder on you then her! She was similar in that could not get enough to eat and just wanted to cuddle and sleep. Slept a lot that day and cuddled a lot and was "normal" by the next...
  10. Oh... Also just to add that if the plateleta are low or if there are irregularities in the CBC blood work the Dr can add on or send for more blood testing for sure, sometimes you don't even need to be poked again to do so. So they may get more platelet detail like the mean etc... They also might add in or order a peripheral smear which looks specifically...
  11. That is rough... I send hugs too... I agree with nvsmomma that it doesn't really sound like it to me either but am very new to it. As she mentioned with itp it is usually diagnosed almost exclusively by platelet count alone and then other tests are used to veryify it is itp and that nothing else is causing the low platelet counts. So unless they are telling...
  12. Thanks for all that info! And glad to hear the spleenectomy worked for you... Most internet/forum people active are ones where it didn't work and so was worrying me as heading that way too... Prednisone not helping so weaning and waiting... There are newer treatments but not good options for me as I have some blood marrow abnormalities... So thank you for...
  13. Goodness... So many little things to think of! Wow! That makes total sense and is so sad when trying to do the right thing that it is not glad you guys posted this for everyone who wouldn't think of it!
  14. Thanks for your reply. Sorry you have had such a complicates time if it!! I know they say the autoimmune issues run together and yours sounds like a classic case, I think perhaps mine as well now (had thyroid cancer in the past). Think I shall push for the testing to be more sure.... Might as well, what's a little more blood on the daily draws! Thanks...
  15. Just curious but wondering if anyone out there now has or has had ITP? I am not celiac myself that I know if but am suspicious of it after my toddler was diagnosed in March. Our family all had "testing" but it was not the full panel and I am not sure it was sufficnet for any of us. For the last 6 weeks I have now had ITP (also autoimmune) and it has some...
  16. Yes, generally they recommend taking calcium one hour after almost any other meds as it interferes with many. So either one hour after or up four hours before other meds is often the recommendation. It makes a significant difference in synthroid and thyroid meds for anyone on those!! So it is important for with other supplements but I wish would make more...
  17. That is good then! Rules that out! Good.luck with the figuring it out! Always amazing how many things need to rule out!
  18. Some of your symptoms could be related to your kidney function to so might want to check on that.if it hasnt been checked. Especially the foamy urine but some of the others are well! Might be unrelated but worth checking!
  19. Hi Morgans Mom... Sounds a lot like my daughter who was diagnosed at 17 months. Her blood work was negative but she was having surgery for her adenoids and I had a goods ENT surgeon who was suspicious of either esophageal eosinophilia or celiac and got a GI surgeon to do a scope. Had we not had that we would not have known. I hadn't gone gluten free at all...
  20. Sorry, I might have confused it... She is 19 months old. She was diagnosed by a GI surgeon who did a scope Feb 14th while she was having an adenoidectomy and has been gluten free since we got he results early march. She has never had constipation issues, always frequent loose stools. We have yet to see a GI specialist about the celiac diagnosis, we got a...
  21. My little one is now 19 months old, was diagnosed about 3 months ago now. Her iron levels have been low since before diagnosis but were not treated as weren't "too low". We switched from milk (which we worried was making her worse anyways) to formula to add in some iron but her pulmonologust just started her on iron supplement in addition to the formula with...
  22. That sounds so horrible, I am sorry you had to go through that! Glad they were able to get samples still so can hope that can assist and make it all for something!
  23. Aw that sucks! The wait is hard for all of these things! My daughter has been worse the last few weeks and the pulmonologist thinks perhaps is seasonal allergies with EE that just didn't show. And we just repeated her sleep study poat-op now so that was reminding me of you! I hope the referals speed up for you!!! And as you said, always gets worse on the...
  24. Was hopeful you have made progress in your referrals and testing!
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