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October3

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Everything posted by October3

  1. October3
    Its the allergic reaction part that scares me Samie. It seems like more people than not who I've run across who have had the treatment have had a reaction. I'm not sure which one they are thinking of for my son - they just said Iron Sucrose injection. Beyond the reaction piece it sounds like its pretty time consuming as well. Thanks for sharing your...
  2. October3
    Thanks Hexon.
  3. October3
    Alright, I've done a little reading up and now I'm freaking out a bit. Sounds very scarey and something to be avoided at all costs. Actually, my thought is "Oh hell no, my baby is not going to do that!" I'll listen to reason. Maybe the stories are just the bad experiences and most of the time is actually works out well? In the mean time I'm off to...
  4. October3
    My son's GI is apparently considering giving him Intravenous Iron Sucrose if his labs have not improved by the next check. Anyone been through this? Just wondering what is involved. How long does the treatment last and how often is it prescribed usually?
  5. October3
    That's a fantastic idea! Thanks!
  6. October3
    Thanks Mushroom.
  7. October3
    Finally got a call back today from the clinic where we took my son for a second opinion. The doc made a bold statement and diagnosed him as "potential celiac". I think that's about as good as we're going to get at this point, so I'm pleased. The scope he had a year ago had previously said everything was totally normal. Then I had heard from this...
  8. October3
    Thanks all. I appreciate the reality check. I'm not really concerned about my husband's ability to manage. He's been the primary cook in our family for years now and been able to successfully navigate many, many changing elimination diets. It just seems the cross contamination issue is so much of a problem with gluten compared to the other things...
  9. October3
    We are awaiting a diagnosis for my 7-yr-old son any day now. The GI nurse told us to expect a call Wed. At this point I'm expecting either a full-blown Celiac diagnosis or a recommendation to do a gluten-free trial. We've waited a year for this diagnosis - his scope was last Jan. And he's had unexplained symptoms practically since birth. So, as you might...
  10. October3
    Awesome! That's the piece of the puzzle we still needed. I'm curious how the doctor will analyze it. I wonder if a 19 is enough to convince him that gluten is a problem? Or maybe its a mute point. If the re-analysis of the scope showed damage then it doesn't matter.
  11. October3
    I'm a bit new to the celiac-specific thing but I've been dealing with food intolerances for years and it seems to be pretty common that once you eliminate a food your reaction to it gets worse than it ever used to be. Its as if you body is finally letting down its guard and saying "Wow, I didn't realize I could feel this good" and then when you have the...
  12. October3
    Thanks Skylark. I've also been doing some reading. Is it fair and accurate to say that the gliadin IgG is measuring a reaction to gluten in particular? So his elevated tTG is indicating an inflammatory or autoimmune response in his body and the gliadin IgG is saying his body is responding unfavorably to gluten? If so, you put the 2 together and I'm fairly...
  13. October3
    Just got a call back from the nurse in my son's GI office saying the pathology report (they were reviewing the slides from a scope done elsewhere a year ago) is in but the doc is out of town til Wednesday so I don't get to hear anything about it til then. So, I get to sit and stew about it for several more days. So in that case, anyone want to help...
  14. October3
    Gemini, thank you. I'm feeling good about the docs we're working with now at the Celiac Disease Center. Our previous GI had pretty much written it off - told us to keep giving him massive amounts of iron supplements and leave it alone unless/ until things get really bad. (I won't get into the talk about how if we miss a celiac diagnosis it really isn't...
  15. October3
    Well, our story is that he is still on gluten at this point, so that could be it. But he has nothing besides the ttg indicating celiac. Doesn't react obviously to gluten, doesn't feel better either on or off a gluten-free diet, negative scope, all other labs are normal. Well, we just had the full panel done for the first time 2 weeks ago and gliadin IgG...
  16. October3
    I believe it is standard protocol to retest the TSH in children if 1 comes back high. 2 elevated TSH's taken on 2 separate days is enough to warrent treatment. I don't know why - I haven't researched that question myself. I just know my daughter's endo said so. How old is your son? (I think I missed that and now can't go back and look). If he...
  17. October3
    I did the same thing to my super sensitive baby girl. Poor thing. She's 4 now and can tolerate almost everything that used to be a problem but soy is still a major problem even though we figured it out when she was 6 months so she's been off soy since then except for the periodic accidental contamination. I will say though that her reactions have changed...
  18. October3
    My son (still in the pre-diagnosis stage - elevated ttg/ negative biopsy) has problems with the enamel on his baby teeth. The front 2 teeth turned brown around the time he was 1 and was really struggling with nutritional deficits and chronic diarrhea. I had multiple doctors tell me it was nothing even though I showed them their own pamphlet from their waiting...
  19. October3
    I thought I would update, just in case someone was doing a search and ran across this thread. I couldn't have been more pleased with the experience at U of Chicago. Every single staff person we encountered, from the security people giving us directions to the doctor himself, was super friendly and helpful. The doctor said several times that I should take...
  20. October3
    I am still pretty confused about the celiac tests and what exactly they are looking at, but I do know that it is possible to have an IgG based sensitivity to a food that is not life long. I had extensive IgG food intolerance testing done and am almost certain that with eliminating those foods for a time and working on overall gut health I've been able to...
  21. October3
    Thanks for the thoughts.
  22. October3
    I've had this back-up plan in my head for the longest time - at least 8 or 10 months - that if I didn't feel like we were getting anywhere with the docs we've been seeing I would take my son (age 7) to Chicago to see Dr. Guandalini. Actually the plan originally was Dr. Fassano in Maryland, but I called there and they recommended Dr. Guandalini and he is...
  23. October3
    Thanks Luddie. I'm assuming your doc is at the U of Chicago? I have read about their workshops / support groups but since we live 5 hrs away I'm thinking that won't be a big help to us. I was wondering if they do any other education actually in the clinic, such as a meeting with the nutritionist during your visit, or if you have to make a separate appointment...
  24. October3
    I have an appt to take my son to the CDC in Chicago next week. We're traveling in from out of town that morning and I'm making plans to meet up with friends and trying to get a sense of the timeline. FWIW, this is a second opinion type appt. My son has already had an extensive work up which has been pretty inconclusive and I'm just wanting the doc in Chicago...
  25. October3
    My daughter is dairy protein intolerant (as opposed to lactose intolerance). She generally doesn't start getting symptoms until 12-24 hours after she eats dairy, fwiw.
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