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thepeach80

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thepeach80 last won the day on June 9 2014

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  • VivianT

    VivianT

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  1. I'm sorry, this is probably somewhere else but I couldn't find it. This is the panel I was told the kids should probably have.

     

    Anti-Gliadin (AGA) IgA
    Anti-Gliadin (AGA) IgG
    Anti-Endomysial (EMA) IgAy 
    Anti-Tissue Transglutaminase (tTG) IgA
    Deamidated Gliadin Peptide (DGP) IgA
    IgGTotal Serum IgA

     

    How many of those need to be + to warrant more invasive testing? Is there one test that means more than the others? 

  2. I have no problem with paper tape for some reason. Doesn't stick as well and if you have an IV you'll need to be more careful but I learned my lesson when I was hospitalized last. I'm supposed to tell the hospital I'm latex allergic but I don't think it's latex at all but I guess it makes them more aware if they see the red and the alerts. I had leads during surgery last year and had red welts for a while afterwards, a week at least. I have a friend who says her daughter uses special pediatric pads and her daughter has severe issues with adhesives and those work well. I need to get the name again.

  3. I know it's a few weeks old, but check tonsils and adenoids for sleep apnea as well. My son, he's still tiny and with my dx everyone is getting screened, was 28# at almost 4 when he had his tonsils out. He shot up to 34# in 4 months because he could find sleep at night and was able to grow. He's 9 now and down to 56# after getting sick in December, sigh. His 7 yo sister weighs more than he does and is barely shorter.

  4. We had a lot of food issues with 3 of my kiddos as babies. Hypoallergenic formula like Alimeuntum is not dairy free, my bad three couldn't tolerate it and did well on Neocate when we stopped nursing or as a supplement in the toddler years. My one couldn't have corn either until about 15 months so we were born on a dairy/corn free diet. It's about impossible to get a formula that is corn and dairy free. Some kids who have dairy issues do ok on Alimentum ready to feed because it's corn free, but it's not dairy free so if you have issues with both, you may be screwed. Some other issues included wheat, soy, egg, and various fruits. Corn is also in reflux meds and abx and about everything so being corn free is a huge pita if your kid needs meds. We use/d Acetaminophen suppositories for fevers and such. They have corn, but since they are inserted in the rear and not in the gut, it didn't seem to both her as a baby. I'm sorry you have to go through this. It blows. Good thing is by 2.5, everything had been outgrown by all the kiddos.

  5. Stupid computer, grrrrr. Anyways, long story short. Thank you, especially Beth, I need blunt and to the point most times. It's chaotic here between jobs and kids and school. Hopefully when I graduate in a few years I will go gown to one job and it'll be a little less crazy here. The kids see their Dr on the 17th for their regular check up anyways so hopefully we can start the screening process for them. I will poke around here for more help. I've already read lots of posts about the kiddos so I'll keep looking. Thanks.

  6. I have 5 kids age 2-11 and a gluten eating hubby. I make food for everyone and budget constraints don't allow for a 100% gluten-free household. Now if one or more of the kids screenings are + it might be a necessity and we'll figure it out, but it won't be easy. This is not about not wanting to so please don't imply I'm doing this half-ass. I work very hard at keeping myself gluten-free free, hence my question on cc and how bad it is. This has been a big step for me this past year and  feel a lot better but I wonder if it could be better. I'm seeking help and seeing what other people do in their house to cut down on cc when there are more gluten eating people than gluten-free. Maybe you misunderstood my post and what I was asking.

  7. I was not really diagnosed a year ago, but I have recently seen my lab results from my tTG and paired with my scope results I'm ok diagnosing myself as Celiac despite being told I'm negative. I've been gluten-free for a year now, but there are 6 other people in my house not on a gluten-free diet. So....how much cross contamination am I getting? I tell when I get big doses on accident, normall when I eat out of the house, but at home I don't usually notice it. I make my own vanilla but I think my vodka has gluten in it. We're almost out though. I don't have any gluten flour in the house, but I allow pasta, premade pizza dough, and bread etc. for everyone else. I will be talking to the kids' ped soon about screening them. We all use the same pots and pans. I feel a ton better but could it be better?

  8. Being a new diagnosis, I'd wait on surgery. See what going gluten free does for you. Having gastric surgery is a big change and requires lots of diet changes and often B12 supplements. Gluten free is a big enough change for most people to handle without adding more to it. I was like you, we did things backwards. Scope, which showed damaged consistent with Celiac, and then blood work. I was told my blood work was negative but some would call it a weak positive and I feel 100x better off gluten so that is how I will stay. It's been a year now.

  9. Weird mish mash of questions, so bear with me please. I don't remember when sx started, first bad sx started in 2007 around my daughter's first birthday. Went gluten-free, easy enough as we were doing a gluten-free trial for my son then too (3 of my 5 kids have had wheat issues in infancy/toddlerhood) sx went away. Came back randomly, dx with IBS in 2009 and it went on for weeks. Had had blood work in early 2008 for Celiac, but have no idea what they tested for or what the results were other than they said negative. Have done on and off wheat free (they could handle oats) diet from 2005-2010. My father has worsening Crohn's and aunt has Fibro. Seem to have a strong hx of gastro issues as well as allergy issues in my own children.

     

    Had gallbladder issues in 12/2012. Saw GI 1/13 who recommended scope as he wasn't sure based on my sx it was gallbladder, or at least that wasn't all of it. Ended up having gallbladder removed 2/13, 5 days before scheduled scope. Ended up having scope 5/14 showing moderate damage to stomach lining and intestines leaning towards Celiac. Followed it up with tTG testing and was told it was negative and I did not have Celiac. I decided to go gluten free anyways last June and haven't looked back. I can tell a marked difference when I accidentally have gluten now. Things I lived for for years that I didn't think twice about until I stopped gluten. Anyways, tTG was 5. I don't know if I've had any other blood work besides that or not, the anti-gliadin etc. 

     

    All of that, would you feel comfortable saying Celiac is the diagnosis? What about the kids, at least the older ones. They are 11, 9, 7, 5, and almost 2. Talk to their ped about testing via blood? I read there's a University of Chicago link I should check, correct? Is there a difference in testing them if I'm not Celiac vs just sensitive? I'm assuming so.

  10. We did my stuff backwards from most it seems. I had a scope and was told I had damage consistent with early Celiac so they then did the tTG. I had a 5 which I was told was negative. Mayo lists that as a weak positive though and used with my scope results I believe I have Celiac even though my GI won't dx me. I've been told I could have non-celiac gluten sensitivity, but best I can tell it doesn't cause damage like celiac does internally. I've been gluten-free for just over a year now and feel 100x better. My father has major issues, Crohn's and it's just getting worse. Aunt has Fibro so I think I have definitely have family history to back it up as well. 

  11. Our GI has a nutritionist we can talk to at anytime. I would make use of that if it's offered. I haven't found anything that can't be replaced w/ a gluten free product, it may be a little different, but you have a lot of options.

    For Evan, he stopped eating as much when we went gluten free. We think he was eating so much b/c he wasn't absorbing right and now he is (though he does not have an official diagnosis). He's gotten taller too. Yay!

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