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October3

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Everything posted by October3

  1. October3
    No, he had an endoscopy and colonoscopy together. They didn't want to have to go back later and scope again if nothing showed up on the endoscopy. Thanks for the link. Going to read it now...
  2. October3
    I think the other piece I didn't mention that has us questioning is that the GI doc who we worked with up until last year told us he does not have celiac, and that we should not eliminate gluten from his diet. He proposed supplementing with iron long-term and no further attempts to find the cause. We weren't happy with that plan and so we decided to take...
  3. October3
    Its not so much that a few people online have reported a bad reaction. Its that every description on medical sites lists a serious anaphalactic reaction to the infusion as about the only side effect. We'll have to talk about it with the doctor because I don't know how common it is but we were hoping we could accomplish what we needed without taking on that...
  4. October3
    No, we've not done a bone marrow biopsy or had his stomach acid measured, I don't think. How do they check the stomach acid? He is not terribly anemic. I think the lowest he has gotten has been a hemoglobin in the high10's. Its enough that we can tell he isn't feeling well - his behavior gets terrible, lots of tantrums, etc and so we have always had...
  5. October3
    Because nothing is better on a gluten free diet, and the docs (including the celiac specialist) have all said the TTG isn't enough to convince them that he definitely has celiac or that gluten is definitely the problem with his iron absorption. We don't have any evidence that he is low in B vitamins. When tested his B's have all been normal, and the...
  6. October3
    Well, there's the level of invasiveness with an infusion - needle pokes and time spent doing the infusion. But more concerning to me is the risk of a severe drop in blood pressure which can be life threatening in some situations. It sounds, from my reading, that procedures have improved so that this is not happening as often but it is scary to me none-the...
  7. October3
    Thank you rosetapper. I will look into both options!
  8. October3
    Yes, the iron supplement is definitely gluten-free. There could be CC in the house but we try to be good about it. We never use a toaster with his food, always use a plate to prepare his sandwiches, most things get run through the dishwasher even if they are hand washed first, separate peanut butters and squeezable jelly, etc. He almost always takes his...
  9. October3
    Let's see, MCV has been low along with Hemoglobin, Hematacrit, total iron, ferratin, retic count, and MCH. We've tested his vit B in the past and it was normal. RDW-CV has been high. He is not strictly whole foods. Just gluten-free diet at the moment. I can't remember if we've ever tried him soy free. I think maybe we did a dairy/ soy free trial...
  10. October3
    I don't know if we're pre or post diagnosis. I have a lengthy post in the pre-diagnosis forum with our backstory. Officially my son's diagnosis is "Potential Celiac Disease". We're questioning the celiac disease theory at the moment because he isn't improving on the diet, but I wanted to pull out this question which would be based on the theory that celiac...
  11. October3
    I post here off and on so if anyone remembers our story I apologize for being repetitive, but here's the backstory for those who don't: I have an 8-yr-old son who has suffered with iron deficiency anemia his entire life. From infancy he had diarrhea, at times tinged with blood. He was worked up by GI then and they said it was a food intolerance (he was...
  12. October3
    Hi there. Thanks! No acid blocking meds. I'll try to dig up his blook work soon. We generally give his iron with fruit juice high in Vit C. He does absorb the supplements, just can't maintain if we try to wean him off. We'd all like him to be off supplements at some point and I thought the gluten-free diet was the answer but not so sure now.
  13. October3
    My almost 8 yr old has been gluten free since February this time. We've been on this journey to figure out why he is chronically anemic for most of his life. Here's what we know: 1. Without iron supplements he is anemic 2. His diet is fairly rich in iron containing foods 3. He has a mildly elevated TTG when eating gluten, and it drops when he doesn...
  14. October3
    The doctor decided what to test for. We didn't see the dietician until later after it was determined we should go back on a gluten-free diet. She mostly answered all the questions about management of the diet itself and how to make sure you are getting the right nutrients, etc. She also worked with us on foods to promote iron absorption since that was...
  15. October3
    I believe elevated lymphocytes can be present on scope in breastfed children because they are breastfeeding and not as an indication of anything abnormal, for what its worth. I couldn't confirm that on a quick Google serach but from memory that's what I recall. Not sure how long they stick around after a child is weaned.
  16. October3
    I drive 5 hrs to take my son to the University of Chicago Celiac Disease Center. For us it is well worth the drive. The GI we were seeing had basically given up on diagnosing my son and had said essentially just wait for things to get a lot worse and then we'll figure it out. We see Dr. Guandalini there. He took a long time with us, ran a lot of tests...
  17. October3
    Re: your initial question about extended BF - I have nothing scientific to give you, but I will say that I also extended BF my DS to age 5 (he is also 7 now). Although he clearly had food intolerance issues from very early on (about 3 weeks) and malabsorption also from infancy his scope in Jan of 2011 was considered normal. I would have thought that being...
  18. October3
    The Bi-State Celiac Support Group is the name of the group I was trying to recall.
  19. October3
    Thanks Kareg. Yes, I believe the info you had for the R.O.C.K. group is the same one I came across although I don't remember there being an email address. I'll have to see if that gets me anywhere. I called all of the contacts listed above and got a call back from Joan who directed me to the Bi-State Celiac Alliance or something like that (can't remember...
  20. October3
    I did. There is a R.O.C.K. group listed but the contact phone number is disconnected. There is a support group but they only get together once a year and it was in May. I was hoping to meet someone before next May.
  21. October3
    I'm looking to connect with other parents of gluten-free kids in the St. Louis area, and also perhaps find a gluten-free friend for my 7 yr old son who is feeling so left out and lonely right now. Anyone out there?
  22. October3
    I didn't get a call back but I did ask about the smoked turkey legs at the stand and was told that they do not use any kind of rub that would contain gluten. They are just smoked turkey legs. So that's what we went with. My kiddo doesn't react to gluten so we have no way of verifying by personal experience whether it was okay but my thought is it was fine...
  23. October3
    I'm thinking they must mean they don't have anything certified gluten-free, because there are lots of things they serve not on the list of foods containing gluten. Things like ice cream (not in a cone), their big turkey legs and corn on the cob. We're going today and I tried to call them but its too early. If I get confirmation of any foods that are...
  24. October3
    Thanks Jestgar. Will have to check into SlowFe. I don't know if he could swallow a smaller pill but might be worth seeing.
  25. October3
    Yes, he's taking iron supplements but finding the right way to do it has been tricky. He's only 7 and can't swallow the huge pill our old GI prescribed which had C and B12 included. We tried cutting it up but that damaged the coating and made it harder to swallow. So we switched to liquid iron which tastes horrible and gives him stomach aches if its on...
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