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rosiemackymom

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About rosiemackymom

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  1. I'm half or so irish, not the same families though (I'm McDonald, Dowling, and Inch) I have lived in Ireland though, and my experience was this: while they do eat boiled seasoned meat and cabbage, fairly often, its not a specific St Patricks thing. St Patricks is a religious holiday. You go to Mass. And, its during Lent. So the giant partying is an American thing, though now some of it has retroactively spilled back to Ireland. Now there are parades and stuff, but its not traditional.
  2. I had heard that about tTG and other auto-immune conditions before, but since my son also has celiac (or well, unless he has a negative biopsy) it seems likely to be celiac. I have type 2 diabetes, but it is not auto-immune and does not generate tTg. Honestly out of all of those options, I hope its celiac causing my elevated tTg! I think 504s are useful at school. We have IEP for othe conditions for my daughter and it has been very very useful at times to have concrete documented reasons for things. Very, very useful. I will be pursuing that for Macky when the time comes as appropriate.
  3. yes, I am having a biopsy I presume. I'm meeting with the GI April 1st (and am on the cancellation list for sooner) I plan to go gluten-free even if they say I don't have celiac, both because I have sympotms and to support my son. Thats why i want it. But its been so frustrating, to be delayed and delayed. Hopefully he is well enough tomorrow. Cross your fingers or say a little prayer or whatever you do, please
  4. Yeah, I plan to go gluten-free even if my biopsy says I don't have celiac (yet). I figure this is the last time in my life I'm on gluten, thats why I want to do the biopsy now.
  5. I guess the thing is, its all very short term, no matter what he and I are both going gluten-free as soon as all the testing is over. I just feel bad prolonging his issues during the whatever it will be, 3+ weeks after his biopsy before I can get the rest of my testing done. I don't really care about school hot-lunch, because as you say, its uh... not very good quality food (we're somehwat organic-obsessed) but there are other issues at school, if my daughter's class is any guide. (parties, art projects, food sharing, cross contamination, etc etc). anyway. I really do appreciate your input. Oh and yeah, kellymom is an awesome website (does not seem to have gluten transit time though). How was your daughter's test negative if she is making tTG antibodies? Or do you mean the biopsy was? l' date='Mar 15 2009, 10:13 AM' post='517797'] My personal experience on this is with casein (the protein in cow's milk)... My son is very sensitive to casein. By the time he was six weeks old he had colic, projectile vomiting, and green diarrhea with streaks of blood... this was during exclusive breastfeeding (we held off on solids until he was six months old). Thank goodness for the Internet! (One really good site I found is www.kellymom.com). I figured out that the problem was dairy, took it out of my diet, and within a few weeks he was completely back to normal. BUT... I did slip up a few times My local health-food store makes really excellent jalapeno cheese grits and I was almost done with the bowl when I realized, Doh!!! This stuff has cheese! And sure enough... within a couple of days my son had diarrhea and eczema on his cheeks. Personally, I don't think you can predict how long it will take for gluten to go through your system... or how much gluten it will take to cause noticeable symptoms in your son. You could be causing damage without any obvious symptoms. I do know what you mean about proof though. I recently had my daughter tested for celiac. Her test came back "negative," but she is making antibodies (Ttg, which is pretty specific for celiac). So... we've taken her off gluten. My husband and I agree that this is best for her health. I wish somebody had told me thirty years ago to stop eating gluten! I assume that she WILL be rebellious as a teenager ... I figure we can always insist on more testing at that time. When she's an adult the choice will ultimately be hers. IMO, the good thing is that celiac is not like a severe allergy (which I have personal experience with)... a little bit might make you sick (and you definitely want to avoid it as best you can)... but it won't kill you. You have a little time for a rebellious teenager to learn the consequences. I can't speak to the school issue... honestly, I'm not sure why schools need a letter from a doctor. For religious reasons our family doesn't eat pork, lard, or gelatin, but I've never been asked for a note! Shouldn't the school just respect your wishes? I could understand the fuss if you wanted your son to get lunch from the cafeteria... personally, I wouldn't trust the cafeteria. Lunches from home are MUCH more safe.
  6. Oh fadge, lovely, yes, yummy Irish food. I think that you could sub egg replacer or flax mucilage or probably just soy milk. The potato helps them hold together.
  7. the thing is, I agree with you, but I want him to have as "legitmate" a dx as possible for school and so I can tell him if/when he is a rebellious teen later that we have "proof". For me, though... I would consider just going off it if they can't see me sooner. So you think the gluten would still be in my breastmilk say, 12 hours after I ate it? I have tried to find conclusive information on this and failed.
  8. alas I've already begged and I am on their wait list to see any available GI doc in their clinic (have to go to them, stupid HMO insurance)
  9. I've written about this a little bit here before, but its gotten even more complex, adding me into the equation too. so two years ago my son had a health crisis during which he had a celiac panel which was inconclusive due to low IgA, so they did a genetic panel and he has a celiac gene (I can't remember which, need to get a copy of that lab) and they told us oh, he doesn't have it, but he cold get it later. Fast forward to this winter, when my little guy (he's 3.5 now) was having increased diarrhea and lethargy so I insisted on a repeat test (pediatrician resisted, but I won) and he had a positive test for celiac, as follows: tTG Ab,IgA 31 H Unit: U/mL Reference Range: NEGATIVE: <5 EQUIVOCAL: 5-8 POSITIVE: >8 IgA 40 Reference range: 24 to 121 Unit: mg/dL Gliadin Ab IgA 3 Unit: U/mL Note Reference Range: NEGATIVE: <11 EQUIVOCAL: 11-17 POSITIVE: >17 So we went back to the pediatric GI doctor, and she said well, he almost definitely has celiac, but we have to do the biopsy. We scheduled it for 2 weeks out. Then he got sick. We rescheduled. He got sick AGAIN, we rescheduled, tuesday is the rescheduled biopsy and guess what, he has another cold. We'll see if they let us do it (they are very cautious with him as he as asthma). Meanwhile. his sister and I got celiac tests. Hers was resoundingly negative. Mine, not so much. Its... "equivocal". what does this mean? I got a GI referral but I dont see him till April 1. Meanwhile I feel rotten. Here are my labs: tTG Ab,IgA 7 H Unit: U/mL Reference Range: NEGATIVE: <5 EQUIVOCAL: 5-8 POSITIVE: >8 IgA 180 Reference range: 81 to 463 Unit: mg/dL Gliadin Ab IgA 13 H Unit: U/mL Reference Range: NEGATIVE: <11 EQUIVOCAL: 11-17 POSITIVE: >17 If you're still reading, you're a saint. So here's my big dillemna. I am still nursing Max, 2x or so a day, and I'm not prepared to force him to wean when he's still feeling sick (he nurses over wanting food, I presume because food makes him feel sick) so I think going gluten-free will resolve this, but in the meantime... anyway, I have to stay on a little gluten so that whatever tests I do next will be correct, but I want to take him totally gluten free after Tuesday's biopsy (assuming we get to do it.) thoughts? I am overwhelmed with all the questions and information and don't really understand our labs and and and. My current plan is to take our household gluten-free (husband and daughter want to do that, they're supportive for sure) on Tuesday (biopsy day) and then I will eat one serving of gluten-food after Max's morning nurse so that hopefully its mostly left my system again in the evening. Until April 1 at least, though probably longer. Does this make sense?
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