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About cyan1117

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  1. My husband and I have been talking about this for a few days and once I get through the biopsy I think we are just going to do it no matter which way the results go. Even if it isn't Celiac the two kids and I could just be intolerant to gluten. Worst case is there isn't any improvement and I can eat all the pasta I want in a month. Thanks
  2. A year ago my 2 y/o had blood work for Celiac that came back negative. Shortly after the Dr wanted to do a biopsy and scope to get a look at his stomach & intestines due to severe reflux, FTT, D, and an upper GI that shows thickening of the jujenum(?) folds. All normal except a few lymphocytes in lining of esophagus that we were told not to worry about. Flash forward a year and reflux is improving, still have D many times daily, weight has gone up 5 lbs from March to Sept but he had been consuming 2200+ calories a day between food and supplements. We took him off supplements in late Sept and he seems to be holding onto the weight, just a little fluctuation right now but he has been sick. Ped GI is happy with weight gain but basically told me that I was crazy to even think that he could have Celiac with the negative blood and biopsy results. He had surgery on Monday to correct a hernia and I had them draw blood when he was under and had the Celiac Panel that the regular pediatrician suggested be re-run (TTG, IGG, IGA). All are completely normal. I was looking back through all of his labs and realized that everytime he had labs done at duPont they send it to Quest Diagnostics. I was wondering if the lab that runs the test makes a difference? Do I just believe the GI Dr that it can't be Celiac? I really thought that we might finally have an answer to all of his odd symptoms and issues but she really doesn't believe that it could be this. She says it's just Toddlers D, cut back on juice and it will go away. I wanted to smack her! He doesn't get more than 8 ounces of juice in a day, much less on most days. We give him a rubbermaid juice box with 3/4 water and 1/4 juice no more than twice a day on most days. If it's hot and we are outside then it would be more but I truly can't believe that 6 to 8 ounces of juice in 24 hours would cause this much D. I have recently tested positive on bloodwork and my GI is doing biopsies in a week. I really put Celiac out of my mind for him until my results came back a month ago. I guess I am starting to think that I am pulling at straws with him now after his Drs strong negative response to my suggestion that I would like to take another look at it being Celiac. He just has so much going on and this did make sense. Be honest, please. I am just so frustrated at this point, it's been two years of it could be this, nope; it could be that, nope; well maybe it's this, no again; it has to be this, wrong. UGHH! Thanks
  3. I am very curious about something that I have seen here on the boards. A few posts mention that Celiac has neurological effects? What? I have a 9 y/o daughter that has been diagnosed as Bipolar, and ADHD. This journey started when she was 18 months old and started having tantrums, normal at this age but the severity is what I questioned. She would get so upset at even a simple "No you can't touch the hot stove" that we would put her in the bathtub because after 20 minutes she was going to puke. The rage in this child is not constant but absolutely an issue. She now has two younger half brothers ages (2 & 3) and we have caught her kicking them full force in the face just for coming into her room. Now I did ask last year for her pediatrician to run a "Celiac Panel" and I will be honest in saying that I don't know the numbers, Dr. said that they came back normal and that was the end of it. I asked for the Panel because at the time they were looking at my 2 y/o (then 11 months) for Celiac and a whole host of other things. I had read that there could be neurological side effects of Celiac so I asked for the panel. Ok so my dd continued to have problems with tantrums, mood swings, and rage so over the years I must have taken her to 3 or 4 different therapists who all told me that she just needs more discipline. Please understand, I am not a weenie. My children absolutely get disciplined. I was so frustrated at this by the time she was in Kindergarten that I just gave up and decided that it really must just be me (I even started seeing a therapist to find out what was wrong with me) like her pediatrician suspected. After thinking that I was nuts for a couple of years and her deteriorating moods and more severe tantrums we started having problems in school last year right away in September. She was having severe issues with her peers, problems with attention, and noticable mood swings even in school. Last August it had gotten so bad that I literally was ready to send her to live with my parents because I was going to have a nervous breakdown if things didn't change. I cannot even describe how bad it was in my house at that point. Last year we switched pediatricians in August and at her first visit with them I told the Dr about all of the behavior issues that she was having and he thought that maybe another therapist should take a look at her. So we scheduled yet another visit. A few weeks into school she started experiencing blurry vision and upset stomachs. New Dr couldn't figure it out, eye Dr saw nothing wrong, off to the Neurologist we went. This guy literally has saved my life. After spending two hours with us he asked if I had ever heard of Bipolar Disorder. I really didn't know much about it but he was convinced that was what we were dealing with. He wanted to run some tests to rule out other things so we did that. Everything ok. Since Bipolar is such a huge diagnosis I decided that I wanted to find a Psychiatrist that deals with children and had experience with Bipolar. That in itself is a long story but we finally found one and after months of "getting to know" her and I he agrees that it is Bipolar. A year later and after me not wanting to medicate and then reluctantly trying she is on two medications which are helping with her ADHD symptoms in school and has made some difference in the severity of her mood swings. She is by no means back to normal if there is such a thing. She is the nastiest child I have ever been around, but I will be the first to admit that she is the worst with me. The Psychiatrist says this is all normal for Bipolar. So here is my celiac question....could celiac cause these types of symptoms? I know it's probably a stretch since her labs were normal but you guys are really making me wonder. To give you some family background I recently had elevated IgA levels, but IgG and tTG were normal range. GI Dr still thinks Celiac is a possibility and is doing biopsies on Jan 4th. I have noticed that when I eat wheat my nose stuffs up, I get a weird sensation in my ears (like when you fly and have to pop them) and ususally have to run to the bathroom within 20 minutes due to cramping and having to go. Had Gallbladder removed last year due to stones after my son was born. Many wierd labs that we can't explain at this point (Creatinine Clearance, AST, ALT, Alkaline Phosphatase, Prothrombin Time). I went to GI Dr because of the liver enzyme elevation going back 10 years and the Metabolic Dr that I went to for something else thought that I should see GI. So nothing concrete for me but we are working on it. My 2 y/o son has had GI issues since birth, started with projectile vomiting, he turned blue a few times, and after being told that it was Colic (ugghh) a Dr finally diagnosed Reflux. We did see some improvement right away on Zantac but he has had issues with Diahhrea since we started solids. He was classified FTT around this time as well because his weight went from 50%tile to below 0%tile in a couple of months. His GI Dr wanted biopsies last year due to the severity of his Reflux and everything else. They didn't find anything out of the ordinary but did note some Intramucosal Lymphocytes (?). At the time he was having biopsy done he had been pretty much pooping out his food completely undigested and does have a slightly distended belly, not severe though. He also tested as having severe Pancreatic Insufficiency at that time. Enzymes helped for the few weeks that he was on them but Dr discontinued them because there was some doubt about the Panreatic stimulation test due to elevated pH of the sample. GI Dr decides that biopsies are "inconclusive" and basically tells me that he isn't growning because I must not be feeding him. She sends us to a nutritionist who has us track his food intake. After three days of journaling she calls to tell us that he is eating more calories than he should need so there is no reason for his weight loss. She puts him on Resource Just for Kids 1.5 (super charged Pediasure basically) and he immediately gets even worse with the Diahhrea. This goes on for 6 months, he finally gains some weight and is back on the growth charts at 18 month check up. During the 6 months he is literally eating over 2400 calories a day! and we decided to try regular Pediasure to see if the D gets better. It doesn't. His bowels are never quite normal, always either pale or very dark (almost black), always watery/looking shiny, and extremely foul. He is off the pediasure now because his weight seems to have stabilized. At this point I am having a celiac panel re-run on him because when they ran it prior to his biopsy it was a little off but not to the point she was concerned. I guess what it comes down to is I just don't know what's going on with all of us, but suspect it may be Celiac.
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