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Worriedtodeath

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Everything posted by Worriedtodeath

  1. Worriedtodeath
    Oh BOY! We started at my daughter's 12 month visit. She was a healthy thriving 9 month old who at her 12 month old had not grown or gained weight. We went to 13 months visit and still no change. About then I realized we had mooshy poop - tons of it actually- Blood panel was negative so we went the way of allergies and unknowingly removed all gluten from...
  2. Worriedtodeath
    my daughter's ped gi says my baby doesn't have Celiac but so obviously has an allergy/intolerance to wheat, rye, barley, and oats. ??? maybe Elizabeth gets the same crap as the rest of us ....
  3. Worriedtodeath
    I'm sure you will have more experinced people chime in, but the Ema is very specific for Celiac disease and a positive is a sure sign of Celiac. The ttg is the "thing" that relates to intestional damage. So you have damage occuring, another yes for Celiac. The negative biospy does not mean you are in the clear. It simply means the spot they biopsied...
  4. Worriedtodeath
    So now that Gluten Free Rice Chex has made their way to the east coast, we are dutifully doing our duty and eating box after box. Today, we made treats (everybody is in ball so I'm a snack producing machine at this moment in time - Yk, they can't remember the last time they had a meal when they play ball Here's today's recipe melt/boil 1 cup...
  5. Worriedtodeath
    It's finally in North east Columiba, Sc! My kids streaked down the cereal aisle and started screaming it's here!!!! You would think it was Christmas! Stacie
  6. Worriedtodeath
    I can't find the info now but I'm sure someone else has it since I found it here but there is research that says the brain barrier has the same makeup and such as the gut barrier and responds in the same way. And thus some deal with "mental" issues i.e. behavior, add, etc. or issues that mimic brain diseases or causes them in place of or in addition to...
  7. Worriedtodeath
    Im in the same boat! Except mine is 22 months and we've been dealing with this since she was 12 months and we still have no definite dx. We do have a mild lactase deficiency but not enough to cause all of her problems. After the biopsy we on our own without any medical support or agreement removed all gluten. she dropped from many bms a day to one or two...
  8. Worriedtodeath
    I wish I had people here who felt like ya'll!!! i'm not going to give her anymore dairy and gluten is out for good but a test that "proves" would be most helpful around here. It's just too coincendental to everyone around here as they could be explained by hayfever reactions and airborne allergies (though with as much of a stretch as dairy is since she...
  9. Worriedtodeath
    HI! Does anyone know of a good allergy test for delayed allergies? I'm seriously beginnning to belive that all three of mine have a delayed reaction to milk. We've eliminated milk in addition to gluten and the middle one's runny 24 hour 365 days a year nose congestion has disappeared and the oldest's bumpy skin has finally just disappeared. The baby...
  10. Worriedtodeath
    My little silly can't handle any soy. Soy cheese comes right back out. Just last night, at after hours a ped told me if you have negative antibodies and neg biopsy, then you don''t have it. I laughed at him. He looked offended. I told him the diet is the only thing that has worked and just last month, she reversed her FTT dx and has grown 2.5 inches...
  11. Worriedtodeath
    WE started down that road with our baby. FTT, no growth, stomach upset, irratibility, refusing to sleep thru the night, thin arms, frail, tired all the time but won't sleep more than a hour, huge stomach, no butt, saggy wrinkles down her back, doesn't speak more than ma-ma, da-da, etc. 3 drs all agreeing this was a Classic text book case of Celiac ...
  12. Worriedtodeath
    Good Lord that is horrible! I would never be able to do that. CC alone should be enough to let you know you still have a problem or at least with us it does. I just wish I had something with what we all ready have that could be of use somehow. I did discover my old upper and lower gi's presented with what now would be considered early Celiac's but way...
  13. Worriedtodeath
    That's what I've tried to explain to hubby. If it is something else, then wouldn't it still be here somewhere??? Wouldn't we still have tummy issues or something to indicate that gluten isn't the cause? You don't remove gluten, have a 100% improvement and no other issues at all and it not be gluten. That's why I thought of the panel test. If other drs...
  14. Worriedtodeath
    Forgot to say that the Gluten-free Casein-free diet has been a miracle and that she has had the greatest height AND weigth increase in over a year according to the ped. THe diet is working and working great. Hubby and the ped would like a REASON now as to WHY and one that can be confirmed and duplicated and you know how scientists are. There is always...
  15. Worriedtodeath
    HI! I
  16. Worriedtodeath
    I have to second the idea that she might not know she hurts until after going gluten free. My oldest two didn't have clue that you shouldn't have a belly ache as they were used to it. 2 weeks of gluten-free and they were amazed to have a day where they recognized they felt better. Now they know they hurt when they eat something they shouldn't and they...
  17. Worriedtodeath
    We did gluten at every meal and every snack for 96 days. Didn't do a thing for us but give me permament stains in the carpet, her clothes and a very very very sick little girl. 9 weeks gluten free against the drs wishes since her test shows gluten is not her problem, she has had the best height and weight growth in over a year. Her ped says the proof is...
  18. Worriedtodeath
    LEave it up to you guys to always have a replacement . I'll have to get that loaf pan! Stacie
  19. Worriedtodeath
    My 22 month old has been doing great Gluten-free Casein-free. Now pollen season has kicked in and she is very sick with a high fever. We started dosing her with tylenol childrens grape flavor which I thought was safe from dairy and gluten. Today we have oodles and oodles of dark green slimy shiny liquid. (sorry to be gross!) It looks more like a lactose...
  20. Worriedtodeath
    My daughter is only a month older and they sound like twins. We have gone round and round in circles with doctors. IF any of them said the biopsy showed damage, I would run with that. Gluten free can only help not hurt and right now the child is more important than the dx. IF she has other problems, they will still be there regardless of the diet. If...
  21. Worriedtodeath
    I have three littles so I have to come with as many calorie rich weight producing meals as possible to keep weight on them. Putting weight back them may just be out of reach but we are trying. I follow GLuten Free 101 recipes and the bread recipe on here everyone raves about. Having been a heavy baker, I thought this would be a walk in the park. NOT...
  22. Worriedtodeath
    Stupid question but this means it is possible to dx Celiac based on the way the insides look??? My ped gi said he thought my daughter had a patch of flattened villi but would wait on the biopsy of that area to say yea or nay. Since he was looking for Celiac, he could convince himself it was a damaged spot. Once the biopsy came back negative, he decided...
  23. Worriedtodeath
    Bad news -Musc shut down for Good Friday Good news - lab in Greenville has the blocks and slides and maintains them for several years!!!! Whoo hOo! AT least I can say I sent them everywhere and had them read by all the latest 2008 had to offer! THen I can drop it and just keep on doing what works. Thanks Stacie
  24. Worriedtodeath
    Oh the address says Charleston that may be the reason. We are in Columbia where they have a med school too. I forget about the one in Charleston. Popping out emails and taking numbers now. Thanks!!!
  25. Worriedtodeath
    MY GOD !!!!My ped is one of the trainig drs who works with interns and residents at that very school!!! What is up with that!!! I didn't know that about the samples. I'm on that so freaking fast!! THey can't destory them than can they??
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