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3groovygirls

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  1. Just to update this - we got the results and she actually has C. Diff. Well, that is weird!! I'm glad it's not Celiac like my other daughter but how strange! He said she probably got it during a course of antibiotics from strep. So yeah, now we have this to deal with. Poor kid!
  2. Thanks guys! I didn't ask WHAT tests they were running on the stool. I just assumed that was the test! They were also checking for H.Pylori I know. Maybe I misunderstood but he seemed to insinuate that if the stool came back a certain way it might justify doing the biopsy on her. Maybe I assumed it was for Celiac but it was for something else? Ok, I'll ask again later when I get the results and know what tests they did on it!
  3. Hi everyone, My 11 year old was tested and sent to a GI Dr. for screening b/c she's having a lot of nausea and diarrhea. Her Celiac blood test was negative, however he's calling it inconclusive b/c I have a 6 year old with Celiac. He isn't sure if she eats enough gluten for it to be + because we eat most meals gluten-free. He is having us to a stool test. (If it's not Celiac we need to figure out what is going on). Depending on what this test shows she may have the biopsy regardless. My question is - what will the stool test show, what are they looking for if it IS Celiac? (Inflamation, etc?) How much gluten do you have to eat for the + blood test? I know it's one slice of whole wheat bread a day but how does that translate IRL? Like some days she's all gluten-free, some days she's gluten-free except a few Pita Chips with lunch, and other days she will have a slice of real cake at a party or pizza. But it's not CONSISTANT every single day......some times it's gluten for 3 days and gluten-free for 3 days, sometimes it's gluten-free all week except her 4 pita chips each day at lunch KWIM? Is this enough? Or most likely, he's just not sure, thus the stool test before an invasive biopsy, LOL! Anyone diagnosed this route with a negative blood test but they actually had it when they went in there? Tell me your story! She has so much diarrhea she even wakes up at night with it most nights! :-)
  4. Thanks so much guys! I will keep an eye on it and if it does flare up more with some things he eats than others. Once you have a child with it you seem to want to blame everything in the other kids on it, LOL! Shadowicewolf - do you have a good lotion you use? I bookmarked a list, but wondered if any of them work better than others.
  5. Hi! I have a 6 year old that has Celiac disease. She's had it since she was 1 year old. We are very used to it....however, that also makes me paranoid to it. My 3 year old hasn't been tested, he has no symptoms of it so his ped decided it's not necessary yet. Recently he developed Eczema on this thighs, it keeps getting worse. I noticed it was particularly bad tonight after he had eaten non gluten free spaghetti. (Currently my daughter and I eat gluten free, the other 3 kids and my husband do not, with a family of 6 most things we make are gluten-free but not all. my daughter and I were both tested and have the HLADQ2.5 gene). Am I being paranoid and thinking this when it's typical toddler eczema??? Thanks!
  6. Thanks so much!! Yes, the ran all sorts of tests which will are very negative. Here they are: Deamin GLIAD PEP IGG (DPG IGG) (<4.9) I got <0.4 " " IGA (DGP IGA) (<6.1) I got 0.3 Tissue Transglutaminase IGA (<10.3) I got 0.2 Total IGA (44-441) I got 90 Then it also says I have the DQ2.5HLA(HLA DQA*05:DQB1*0201)and other risk alleles. Category %R4 DQ Genotype C Relative Risk: (High) But, like I said this was Jan 2012. So almost 2 years ago. I cut out most of my gluten before this test simply b/c my daughter has full blown Celaics. Then I started putting things together - like I hate Italian food, but when I switched to rice pasta fine! HOWEVER, recently I have seen a switch to just being "bothered" if I eat gluten (Ie, diarrhea) to full on feeling HORRIBLE and tired and exhausted and sick for nearly a week after I have more than a few bites. so it made me re check my tests and ask here - if that total IGG was on the low side of normal if that meant anything considering I was mostly gluten-free. I checked before I had the test and while I was eating gluten I'm not sure if I was eating ENOUGH for accurate results.
  7. Hi everyone! I have a question about total IgA numbers. I have a daughter with Celiac disease. I decided to go to a GI and get tested as I can tell I am gluten sensitive. I was eating about 85% gluten-free at the time. My IgA number was 90. (I also had the genetic test and found I have the gene) It is passing. My question is, if I was 85% gluten-free should it have been higher. Do you think eating that gluten-free made me just barely pass? The reason I ask is, I still eat mostly gluten-free but now if I eat gluten (beer, the other day bread) I get SO SICK. I ate bread last Monday and I swear I was sick till Saturday! Makes me wonder if my gluten sensitivity is worse. My GI Dr. said I am at high risk for Celiac disease b/c of the gene and my daughter so eat as little gluten as I can to avoid full blown Celiac. I have been but this getting SO SICK from gluten is a recent change. Makes me wonder if my original test was affected by the fact that I was partially gluten-free. Thanks!
  8. Hi everyone! I got my results today. I was tested b/c my daugher has Celiac and I am very skinny and had a high amylase reading, but it appears i don't have Celiac BUT I do have the genes for it. I was wondering if you all could look over the test results and tell me what you think. What are the chances someone with my genes gets Celiac? It says I am 10X the risk and am high risk. In real life does that mean I might REALLY get it? Here's my results from Promethius. I have DQ2.5(HLA DQA*05:DQB1*0201) It puts me in Category 4, DQ2 Heterogzygous relative risk HIGH. But I'm fine now! So what triggers this. I don't want to get it.... my other results were normal; deamin Gliad pep igg <0.4 (<4.9) DEAMIN GLIAD PEP IGA 0.3 (<6.1) TTA IGA 0.2 (<10.3) ANIT ENDOMYSIAL IGA NEGATIVE TOTAL IGA 90 (44-441) so I think i didn't even come close to failing right? other than the genes? It's funny b/c I DO think I am a bit gluten sensitive. Since eating a lot of gluten-free products (but not all) I find i am sensitive to whole wheat stuff now.
  9. Hi, I am sort of backwards from everyone here. I feel fine, no real symptoms but my Dr's are convinced I have Celiac. My orginial bloodwork was correct but my amylase was high. went to a GI Dr. and since my daughter has has it and is positive for the dQ8 gene and my size he thinks I have it but b/c I eat partially gluten-free the regular testing isn't showing it. Also, I do have some symptoms but I didn't realize it. for instance since going mostly gluten-free, now I can't eat whole wheat or donuts, bagels, etc, or I get a belly ache and diarrhea. But I CAN eat white bread, a sub from subway, etc. But other than that I'm fine! So what is the Promethius testing? What makes it better? does it test more? i really don't want to have it. is it THAT unusual to be 5'8" and 110 lbs, LOL!!!?? If I DO start eating gluten-free am I going to gain weight? I've been this size my entire life (other than pregnancies). Thanks!
  10. Hi, I was getting checked and posted before but I didn't have specifics. now i have them. My DD has Celiac and is positive for the DQ8 Gene. I got checked randomly b/c I was having bloodwork done anyway. Here is what they ran - but compared to what i've read online it's not anything. Is this specific enough to say I don't have celiac? Or was this an incomplete test with not enough info? I ask b/c my Amylase levels were high and he's not sure why - he said I need to go a GI. He feels I might need a Biopsy to rule out Celiac in this case though I passed the blood test. I eat whatever I want, I'm 5'8" and 110lbs soaking wet. So while I passed he thinks I warrent more looking. here are my results: IGA, Serum 111 (normal 81-463) Gliadin AB (IGA) <3 (<11 negative) Tissue Transglutaminase AB IGA <3 (<5 negative) So did I pass? It seems to me I did. Why would he be sending me to the GI? Family history? Or though I pass do those numbers mean I need more testing? Thanks!
  11. Yes, I was so confused! They said to go to the GI b/c my amylase levels were high. But from reading they don't seem THAT high. Maybe 13-3 points above normal. From what I read this level is only a measure of irritation - like it will be raised for mumps, bowel inflamation or REALLY high (Like 3-4 times normal) for pancreas issues. I don't think he ran a Celiac panel b/c I have NO CLUE what AB is and the IgA - IgA what?? What about IgG?? I am going to the GI so hopefully he'll give me answers. However, I have searched and any measurement of IgA, 111 seems way high!
  12. I got the most confusing results ever. I was tested b/c my daughter has Celiac disease. This is all my Dr. said. He said I passed my Celiac test but my amylase levels were high. They were only slightly high and I"ve read those are commonly raised by pancreasitits (don't have that obviously) or bowel irritation - could that be Celiac? My amylase was 143 (normal is 135 or under I think) All I got for Celiac results was IgA - 111 AB - < 3 I can't figure out how I passed if IgA was 111. I've looked online at all the different scales and not under any is 111 passing. AND he's sending me to a GI. Why would he do that if I passed? Is the amylase that bad? Any ideas? Thanks!
  13. Well, I don't really mean at home, I mean at school. Like sometimes on rainy days they have play-doh recess. That type of thing. It's not like she plays with it every day. I think I'll look into supplying her school with gluten-free dough. I just never thought it was that bad b/c her Dr. seemed to think the chance was sooooo tiny and remote he made it seem like I'd be overreacting if I made a big deal out of it. KWIM?
  14. Ok, so I googled it to try and understand. From what I read if your IgA SERUM levels are low, this can INACCURATELY make you pass your other levels. Is that what you were saying? So if my number was 84 eating 80% gluten-free, can I assume it would be lower if I was eating more gluten? I KNOW I don't eat the equivalent of 4 pieces of bread a day! Many days I eat no gluten at all. Some days, maybe once a week I eat that much, but most days not even close.
  15. this could affect the outcome of the IgA based tests How does the low serum affect the outcome of the IgA based tests? Sorry, I am so clueless!! Here's the thing, I DO react to gluten now. I NEVER did before I started eating gluten-free for my daughter. Now my system cannot tolerate gluten heavy things - like beer. Oh geez, that kills me! Or regular pasta, sits in my stomach for days now I swear and/or I'll get the runs. Not for days on end like my daughter, just instead, um, sorry for TMI! So yes, I do find gluten bothers me now. Would it bother anyone if they went mostly gluten-free and then went back to it or only gluten sensitive individuals? THanks so much, I really don't understand the results. My daughter was SO clear cut that there was no question whatsover so we never had any interpretation issues. I also thought wow, I passed but wow, that is a really low number! What would happen if I WAS eating all gluten instead of mostly gluten-free?
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