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LauraW

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About LauraW

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    Lexington,KY
  1. I'm a ding dong! I obviously can't read, b/c you put in your post MRI and I guess I was thinking biopsy the whole time. Please keep us posted next week with the biopsy. Yes, I saw a GI yesterday and they are going to run my ttg's, since the only bloodwork they did on my was the antigliadin IGG and IGA (both were positive). He does think I should be scoped just to make sure, even if it is not celiac, that something else isn't giong on. Most definitely, yes, I will have a clearer direction with my daughter, if I do have celiac. In one sense, you don't wan't this life long disease, in another, it gives you answers you have been searching for for years. Keep us posted Laura!!! Laura
  2. Hi Haylees dad, If you have a Meijer's there, there is a small gluten free section there. Good luck!
  3. Hi Laura, I am so glad it is over for you guys. I'm sure it feels like a weight has been lifited off your shoulders. My dd actually did great from the anesthia and didn't get sick at all, so I would definitely call the dr and get some phenergran or something that will help her. I would think it was probably from the anesthia, not the noodles, but definitely call the dr. My dd's biopsy was on a THursday and he called with the results the next Wednesday. So 3-4 bus days I would think. My doctor did not say go gluten free until results came back, however, it sounds like your dr thinks there is a good chance Julie does, so I would probably go ahead and start now. I just wanted also to comment on your last post as well. It sounds like you are doing a wonderful job raising your grandaughter and that you are a hero in my eyes. She is very lucky to have you (I'm sure she knows that) and I hope it all works out with her mom following the rules with her diet. It won't take long to figure outif she is not. She will either tell you or get sick. Please keep us posted and I am glad it is all over for you. Laura
  4. Hi Amy, Our story is similar to yours in some ways as well. I have had (I am 34) chronic stomach problems (constipaation) all my life, had several colonoscopies, and basically it was chalked up to IBS. Fast forward to my 2 year old daughter's 2 year check up back in September. Oh, and she has battled constipation ever since she was born (just thought she inherited my stomach). Well, she only weighed 21 lbs and wasn't eating hardly and they put her on miralax for her stomach. Ped wanted to run a blood panel on her for celiac just to make sure she did not have it. At that point, I had never even heard of celiac, nor did I know a thing about it. He got us in to a ped GI that week, who told us that her blood work came back positive, and felt almost 100% sure she had celiac and that we would know for sure if we did biopsy. I later started researching this disease and called back to have them send me her blood work. Turns out her antigliadin IGG was the only number that was positive. It was 33 (>9 is positive), even ttg levels were negative. The more I read on line I found out that the ttg results are the most accurate in determining celiac or not. Well we went back and forth on whether to do biopsy or not, b/c she is so young. My parents and I were in an out right war over this issue. They seemed to think, don't do the diet and don't do biopsy. Well...obviously we are doing one or the other, so we did the biopsy. The actual procedure, no too bad. Pretty short, she did great after waking up...however, they put the IV in her awake which was the worst thing ever. You can PM me if you want more details. Dr says "I don't see any visible damage, however, I think she has a 70% chance of having this". Oh, and I got tested through my ob (Iam 35 weeks pregnant) and they tell me blood is positive for me and to see a GI after baby is born, that I passed this on to her. So I am convinced, totally, that I have it and so does she. Last week GI calls to say test is negative and he doesn't recommend diet unless symptoms get worse. He said "maybe you should repeat the biopsy next year". I wanted to laugh in his face (hell no, we aren't doing that next year). Oh, and before the biopsy I questioned him about ttg levels being negative and he said little ones sometimes don't have those antibodies yet. ANyhow, that's our story. I hope I haven't confused you at all, PM me and we can talk more. Laura
  5. Hi Laura, I will definitely pray for you and and your daughter next week. If they don't have to put the IV in when she is awake, then the procedure shouldn't be bad at all. My daughter has been to the doctor so much since she was born, she freaks out when we are on the street headed to the dr's office (she is very perceptive for a 2 year old). So basically, she screams when she see's nurses, dr's, hopsitals, etc... But the procedure wasn't bad at all. She was only out for about 30 minutes, the procedure took about 10 minutes, and she felt great afterward, no pain or irritability at all. Here's the kicker though...the doctor called on Wed to say test was negative (he did say after biopsy he thought for sure she had it) and that he doesn't think we should do the diet unless her symptoms come back or get worse. Her stomach has been better since we put her on Miralax (she has constipation severly) and been eating fairly well, so needless to say....I am VERY confused. What were her blood results? The only positive number in my daughter's was the antigliadin IGG which was 33. Her ttg's were both negative. My Iga and Igg antigliadin came back both positive, however, my ob did not run the ttg's on me, so I am going to a GI next week for a consult to see if I should pursue. I am thinking I should. Please keep us posted on daughter's biopsy. Laura
  6. It was a regular hospital. Looking back on it, we probably should have gone to a children's hospital. If we had it to do over, I would have gone to a children's hospital. It never occured to me that it would be that different at a children's hospital. The I.V. part I'm sure would have been easier, however, even at a children's hospital, she would have screamed just seeing a nurse. I'm telling you, any medical office or hospital, nurse or dr, she screams bloody murder. As far as taking us back to the operating room. It's a catch 22, b/c you don't want your child to be scared without you, but on the other hand, as you said, she see's me upset, my husband who is barely, I mean barely, holding it together, and that scares her as well. I just want to put that part out of my mind, and hope she doesn't remember it.
  7. Thanks for the info Tiffany! It really helps. Yes, I was very impressed with her dr. He not only came out to the waiting room twice to check on us to let us know they were a little behind, but he took the time to go over my blood results and answer a ton of questions that I had for him. And he was there when they had to put the IV in and based on my past experiences with surgeries, sometimes you don't even see the dr, b/c he doesn't come in until after you are under. After the procedure was over, he immediately came out to find us. He is quite young himself with a 3 yr old and 1 year old, so he was in tune with how emotional we were.
  8. Yes, he did say she is Iga deficient and since the immunoglobin was positive as well, he suspected celiac. What does it mean to be Iga deficient? I also showed him my test results which were: antigliadin Iga 5=positive Antigliadin Igg 17=positive no other tests were run on me. I think b/c my o.b. ordered them (I am pregnant) and they just didn't realize to do anything else. He said my results only showed half the picture and that he wouldn't know what to do with only having this, so I guess I need to go get the rest of the panel as well. Now, isn't it odd that me and my daughter having correlating Iga and Igg antigliadin levels???? Except her antigliadin Igg was much higher than mine. This is quite confusing.... Laura
  9. Now I am wondering if this might not be celiac. I am just sooo confused. Okay I am trying to recall what all the dr told us on Thurs (before biopsy) and wondering what other dr's have said about blood levels. First off here were her blood levels which were done by Labcorp: Antigliadin Iga 4 (0-4 negative, 4 & up is positive) = negative (just barely) Antigliadin Igg 33 (0-9 neg, 9 and up is pos)= very positive ttg Iga Less than 1 (0-3 neg and 3 and up pos)=negative ttg Igg Less than 1 as well (0-3 neg and 3 and up pos)=negative Immunoglobin A Serum 49 (70-400 negative)=positive Endomysial Antibodies Iga negative My first question to him was, "isn't the ttg pretty much the most accurate way to determine celiac via blood, b/c that is what I am reading everywhere on line". His response was "alot of children don't produce those antibodies yet, therefore we look at the antigliadin levels and her Igg was very elevated and her immunoglobin was positive as well". He said that those two usually go hand in hand with diagnosing celiac, however, she may just have elevated levels and not celiac, that is why he recommended biopsy. Okay, fine. After the procedure, he says "well usually when it is celiac the intestines will look like linoleum and be very smooth, her's on the other hand looked quite normal, on the flip side, she may have celiac b/c she is only 2 there is not any damage yet". Then I ask "what does your instinct tell you at this point?" He said "if I had a hundred dollars, I would bet $70 that it is celiac". Now, 2 days later, I am thoroughly confused. Just curious what other dr's have said to others in this situation? Thanks for the help. Laura
  10. That is horrible!!!!! Why in the world did they give her a suppository? I am glad she is okay and things seem to be looking better for her. It breaks your heart to see your kids go through something traumatic. And it looks like it doesn't get any easier the older they get. I am petite and my daughter is very petite as well. Still wearing 12 month clothes. Good luck next week for the follow up. Keep us posted!
  11. wow...hearing that story makes me so thankful that her pediatrician thought to even run the bloodwork on her. Because that would be horrible for that to happen 6 years down the road. My mom, on the other hand, has made snide comments about the ped even checking for it saying "I guess they are just sooo afraid of getting sued these days, that they have to do that". Can you believe it???? We should be kissing his *** thanking him for being knowledgeable to even screen for it. You're right, I am ignoring it and moving on. With or without their support. I was reading my new gluten freen cookbook today and alot of the recipes called for gluten free flour or how to make gluten free flour. Can you just buy the gluten free flour premade? I hope so or I'm in deep, cuz I ain't no Betty Crocker! Thanks for your story. Laura
  12. Hey Everyone! Wanted to give you guys an update on the biopsy yesterday. Well, thank god it is over. That is all I can say. Now...let me just say I hope I never have to do that again with my child, by far it was the worst day of our life yesterday. So traumatic on Ainsley (my daughter), me and my husband (he could barely hold back the tears). I will say it was very short (like 15 minutes total) and no pain at all afterward or any side effects whatsoever, but let me tell you about the I.V. It sucked big time!!!! From the second we got back to the area with beds where they prep you, she was terrified saying she was scared screaming hysterically (which I could not help but cry myself) even when they put the gown on her or put the toe thing on her to read her stats, it didn't matter, she screamed. THen they took us to the operating room, where she freaked out even more and I started to lose it myself. THey did not mask her first b/c evidentally it is a different anesthesia which can be a bit riskier and this hospital won't do it that way. Who knows if there is truth to that or not. So everyone basically held her down while she screamed for her daddy (god it was heartwrenching), but as soon as the IV went it, they put the meds in her and she was out and when she woke up she was great and did fine the rest of the afternoon as if nothing had happened. The amount of guilt you couldn't even put into words but the dr was great and made us feel much better about it. Because I explained that my parents were not supportive and basically think this is nonsense and that they can't believe I would do the biopsy. He said "well, you can do several things: one, ignore the bloodwork and not do the biopsy and she might get sicker and not grow properly, you can not do the biopsy and do the diet when you might not have to if the test is negative or do the biopsy and we can see what is going on and you can be at peace with a relatively certain diagnosis and move forward". He said he has a 3 year old and a one year and wouldn't think twice if he suspected they had it. I needed to know, b/c not all of the bloodwork came back + but there are indicators of celiac in her Igg and immunoglobins that say she could have this. Some people would disagree with my decision, but I just prayed alot and came to peace with the fact that life does have certain risks in it and that I needed to do this to get more information to best take care of my daughter and thankfully in my case, there were no complications. Afterwards, he said that the intestine looked relatively normal, however, he thinks she probably does have celiac disease and that her stomach looked a little pale and that he took a biopsy of that as well to be on the safe side. That also made me feel more at ease about my decision to do it b/c what if something is wrong with her stomach and we never knew. Anyhow, we should know something on Tuesday so I will keep everyone posted. Oh and my mother is still hardly speaking to me b/c of all this. Quite ridiculous really.... I just want to thank you guys for the overwhelming support and kind words you have sent our way. It has made this very stressful time easier and hopefully kept me from going into labor early. Which yesterday, there were a couple of moments I thought they might have to go ahead and admit me. Laura
  13. Well, we did the biopsy yesterday and well... it sucked big time, but I will put a new post out there to update everyone on what happened. They were not equipped to mask her first, so they put the I.V. in her awake (not pleasant). Check out the new post for the latest. THanks!!!! Laura
  14. Hi Robin, I am in the same boat as you right now. My 2 year old daughter had somewhat + bloodwork and a biopsy yesterday and the GI thinks she does have celiac disease. My blood came back+ and after I deliver I will probably do the biopsy as well. I am 8 months pregnant and not sure if I should wait for biopsy or not. My dd and my problems are not the typical problems for celiac, we both suffer from chronic constipation and she did not gain any weight at her 2 year checkup and wasn't really eating either. I have battled IBS since I was a child and just thought typical IBS. I have also suffered from endometriosis, infertility, miscarriage and this stomach thing. Just thought I'd tell you we are kind of in the same boat. You can certainly PM me if would like. I would like to hear how your kids were diagnosed. If you want to go to the post "parents begging not to do biopsy" you can see a little bit of our story. Chat soon! Laura
  15. You totally hit the nail on the head. My mother totally is a celiac but would NEVER go get tested. Why you ask? Because god forbid she has to change her diet and might have to put a little effort into it. Lord I hope she never finds this message board or I'm out of the will. Just teasin! But she has the total opposite problem. THe big D. And she gets it right after she eats. I'm talkin all the time. We are in the car "pull over" if we are on the phone "oh my stomach hurts, I'm gonna get diarrhea" "I need some immodium". She's really the one with all the classic symptoms. Her mother had my problem, chronic constipation, and the scary thing is that they day she died in the hospital (and she died of heart failure) my cousin said look at her stomach. She looked 8 months pregnant (twisted thought I know) but she probably was a celiac and had that bloated stomach. THinking back on it, she was always bloated and hooked on milk of magnesia. My Sister, well she has the big D. I'm telling you, if they tested, it would be positive. My sisters 9 month old has the biggest blow outs when she feeds him the turkey gerber food and the nurse told me to tell them so they could tell the pediatrician. I don't think she will. DENIAL ain't just a river in Egypt if you know what I mean!!!
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