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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Mommy2GlutenFreeChild

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  1. Universal Studios Florida, Any gluten-free Food There?

    I know this is an old topic but it's worth bringing up again because people do travel to Universal and things change. Living in Orlando we have family passes to Universal and have eaten at the parks a couple times. Pastamore in the Citywalk part of Universal Studios has a small Gluten free menu with Gluten free pasta, however, it made my son sick. We tried a couple of the items that were suppose to be Gluten free inside the park and they also made my son sick. So there are issues with cc there. We learned the hard way, so now if we are going to go to Universal, we have a nice sized breakfast at home before hand then we pack my son a bag with real gluten free snacks in it, like fruit snacks, etc. After a day at the park, we leave Universal and find a place that has gluten free food we trust. (Like P.F. Chang) Another suggestion is get a hotel room with a kitchen in it like a Resident Inn etc.. and cook your own Gluten free food in the morning and at the end of the day so you know what you are eating is safe. Unless you want to trust the food at Universal. I just know we have not had a good experience with it.
  2. My son (who is 6 now) had problems from birth with being sick. On baby formula he would spit up the formula and have constipation. They told me it was a lactaid issue and had me switch to soy forumla. For awhile he got better. Then he started on baby foods and suddenly he was spitting up and getting constipation again. He also was small for his age and always had a distended belly. The Dr. went through everything with us. It's just adjustements to new foods we were introducing, then it was, oh he's allergic to blue berry muffins, (to this day I can't remember how they came up with that one. Next we were told his issues were because he was fighting potty training. Colds were because of day care, ear infections because of colds. Constpitation because of fighting potty training. Finally in Dec of 2009, his Dr. stood up and took notice when my son went 4 weeks, count them, yes 4 weeks without a bowel movement and got really sick. She finally ordered some test and one of those test was the blood test for celiacs. When that came back positive she sent us to the peds gastro and we got the bioposy done in Jan of 2010. We believe he was born with it and had it from the start. And people wonder why I don't trust Doctors. LOL. Yes.. it is our job.. The problem is if we insist something is wrong because we know there is, we get looked at funny and they wonder if it's us. They don't want to believe that something is actually wrong. Mother's instinct. Follow and trust it.
  3. Child Back In Hospital

    You are right and I am glad they are there to help people. I am not so mad at Children Services because by law if a report is made by someone against a person they are legally required to look into it. I have been more mad at the person who made the bogus report to begin with, but regardless of any of the CS stuff, I am far more mad at what my son has been through with all of it the last month. But things have calmed down. We had a nice Thanksgiving, he's better and he goes back to school on Monday. I appreciate everyone's thoughts. We are coming up on the 2 year "anniversarry" of his diganosis in Jan and it is just amazing to me how much we still have to learn about it.
  4. Child Back In Hospital

    He turned 6 in October
  5. Child Back In Hospital

    An update: On Monday Morning we went and saw his Dr. as we were told to do so Sunday night at the ER. We saw his peditrician at 9:45am Monday. Dr. said he was pretty confident that it was just pneumonia based on what the ER dr. told him about the Xray. We said, okay and agreed that treating at home for pneumonia was okay with us. So we go home with that plan. Breathing treatment machine at home and 10 days of antibitoics. A couple hours later the Dr. calls me and tells me that he had informed infectious disease and pulomary about my son.. his previous positive TB test and the now infection and that Infectious disease was ordering us to take my son to the Children's hospital where he was a month ago and that he would be admitted with suspected TB active infection and that were to go immediately. So, we go to the Children's hospital admitting/registration and get told his room wasn't ready yet but that we need to wait. They give him a mask and make us wait in the waiting room with him. While he is coughing and running a fever. But I'm not allowed to give him anything they said because they need to give him stuff upstairs by the nurses. Fine. 3 hours later, we finally got put into his room and he was finally given some motrin for his fever, 102.9 when the nurse took it. They did another chest xray on him to verify the infection in his lung and I get told by the Dr. assigned to him, the last as a month (since our peditrician doesn't work out of this hospital) that my son has a pretty big and serious penumonia infection in his right lung. Which still confuses me because he had been 100% fine, no coughing or anything on Saturday except for that slight fever and stomach pain that night and then suddeny by Sunday he is really sick. They also did blood labs to test for the TB and he is put on restrictions. Not allowed to leave his room etc. Later Monday evening, they started him on IV antibotics for the penumonia instead of oral medication. They said it would work faster then the liquid medication he was on and that he was sick enough to warrant it even without the threat of TB. Then we got told that they want to do another skin TB test on him because they don't have records of the positive test from his peditricians office. (Remember it was read negative at this hospital a month ago and positive by his peditrician on a retest not even a week later) So they wanted to do another test. Didn't trust his Dr perhaps? I said no. I told them they were not going to do another test on my son when they had just done the blood test for the same reason and he had already had two TB test in a month. I told him to call the Dr. office and get the results and stop wasting money. They also tell me they want to do some kind of sputum test on my son and explained how the test was done. Nurse told me it was a test done 3 mornings in a row. Each morning around 5am they would come into the room, stick a tub through my son's nose and into his belly or some area to suction out some sputum to test it and find out what exactly kind of infection he had. (TB, what strain, pneumonia, what strain etc) No sedation or anything. I looked at the nurse like she was crazy I am sure and told her, that I wanted to talk to the Dr. first before I agreed to any kind of procedsure like that. My son is super sensitive. He is the kind of kid who if he steps on a sharp little piece of grass, he will insist he needs a Dr. Obvoiusly we don't take him to the dr for that, but he gets scared about everything and I knew that this procedure once was going to be an issue. Let alone 3 mornings in a row. I know adults who would fight a tube in their nose let alone a sick, 6 year old. So the Dr. and the resident comes in to talk to me Tuesday morning and demand to know why I didn't let them do the test on my son that morning. I explained my concerns about how my son would react to such a test. We talked about the idea of sedation and started looking into those options. We learned that we could sedate him once, put the tube in and then leave it in until all 3 morning collections were done. But the nurses said that would be an idea because they already already experienced him begging them to take the IV out and they felt he would have issues with the tube staying in. So they were looking into the idea of sedating him 3 days in a row, which I was unsure about and sedation said no way. So the Dr. said we just had to do it no matter what without the sedation. I started looking at other options and found a procedure where they could use general anthesia, do a one time procedure, go in, get some sputum or whatever they needed, and also see the actual lungs etc. It sounds more severe then the sputum section procedure but I figured a one time deal with him alseep knowing nothing was a lot better then a procedure done 3 mornings in a row where he was wide awake and suffering through it. I suggested it to the head Dr and the resident and at first got told no by the resident but then the Dr said that it might acutally work and be a good idea. So they scheduled that for Thursday morning. Yes it took us all day Tuesday and Wednesday to figure all this out. Wednesday evening around 9pm, another one of the residents comes in, the evening shift lady (who I hated from the start), as well as the person from pulomary. I get informed that Children Services is out in the hall way wanting to talk to me because some one had reported to them that I was making my child sick on purpose or making up illness with him. But that they needed to talk to me before they let Children Services talk to me since the pulomary person had some where else to be. They both swore up and down that no one at the hospital called Children Services. The pulomary person explained that they couldnt do the other procedure on my son because it wouldn't work for a tb sputum test since it went into the lungs instead of the stomach. I am not clear as to wy but she explained it all and I decided to agree to the other procedure... but told her that my son had to be sedated for it the first time and the tube left in because I knew if they did it once with him awake they would never get it done twice more. (I know my son) She said fine and left. I then talk to Children Services who tells me some one outside the hospital called them and said that I have Munchausen by proxy syndrome and that I am making my son sick and that he doesn't really have celiacs and a bunch of other crap and that I make him sick or pretend he is sick for attention. They asked me questions, they asked my son questions without me and asked my husband questions who had been at the hospital with me the entire time as well. They even talked to our room mate. Then they got my son's medical records. What a bunch of crock. I know who reported it. I have a family member who doesn't trust me, but who also hasn't seen me in 4 years or my son in over a year.. So Thursday morning.. that stupid procedure they did on my son that they wanted to do 3 mornings in a row with the tube in his nose. I was told they night before by the head Dr and morning resident on the phone, they would use a spray to numb his nose and told they would sedate him and keep the tube in to avoid the procedure 3 times. The night time resident comes in at 5am with 2 nurses and one other lady. I left the room because I knew if I stayed I would get in their way and cause problems. My husband stayed with our son to help comfort him and I went and waited in the parent lounge. It was suppose to take 10 minutes. 30 minutes later my husband... totally pissed off comes and gets me and tells me what happened in there. No numbing spray, no sedation on my son. They wake him up and try to put the tube in his nose. According to my husband my son tried to be brave and do it at first, but the farther the tube got the more upset he got and that they kept telling him to swallow to help pull it down and that eventually he started screaming, trying to rip the tube out, coughing spasms etc. 3 times... 3 times the idiots tried it on him before my husband demanded they stop and they decided they wouldn't try again. And, my husband heard them saying they were drawing blood to check for like arsenic and stuff. I, as well as my husband were pissed. I demanded to see the head nurse and an administrative person, as well as my son's head Dr and resident instead of that night resident who I refused to speak with at all. And I went off on them when they got there. Apparently some where through all the communication the night resident missed the part about sedation and numbing spray etc. But the head Dr and resident agreed with the nurses that there was no way they would try that procedure on my son again. So they got nothing out of it and he still got totured which is what I tried to warn them about to start with. I also told the Head Dr and resident about the Children Services thing. They both laughed and told me I had nothing to worry about because they knew I was not making my son sick and that I didn't have Munchausen by proxy syndrome, that they knew my son had celiacs because they had records of his positive bioposy and that I couldn't give my son penumonia etc. So I at least felt okay about that. They told me they still wanted to do the skin TB test though since the blood test for Tb had come back negative and they were confused. 1 skin TB test negative, 1 skin TB test positive and 1 negative TB blood test, but 1 lung with a large infection had them confused. So I agreed to the TB skin test and we were told my son would be there until at least Sunday to wait on the read for the test. I said fine, just get it done. A hour later, they still had not done the skin TB test and FINALLY the lady from infectious diesease who had him admitted to start with, comes and sees everyone. She gets the Xrays, talks to the head Dr. on his case, talks to the resident, talks to his peditrician on the phone, reviews the blood work and finally talks to us and sees him. His fever was gone, his cough was mostly gone as well by Thursday and he was active and feeling/looking better. 4 days of antibiotics got him well fast. She informs us that she belives that the TB test at the peditrician office was a false positive because it was done so soon after the first one and that she didn't think he had ever been exposed to TB after all and since he was respodning to the antibotics for the pneumonia, there was no reason to think his being sick was anything more then a bad case of standard pneumonia. She said she stil wanted to do a new TB skin test just to be sure but that she felt my son could go home with oral medications at this point for the pneumonia. Finish up the meds, enjoy Thanksgiving week and come see her for the TB test and follow up Xrays to make sure the infection cleared up in his lungs the week after Thanksgiving. I asked her why she didn't come see us Tuesday or Wednesday and just got told she had been busy and needed time to let the Dr. do their labs and tests. I just shook my head and said okay, does this mean he gets to go home today after all and she said yes it did. So basically they put him through that hell on Thursdya morning and had him in the hospital for 4 days for no reason. I guess it's okay about being in the hospital because from what they explained the pneumonia was pretty bad and that the IV antibotics did make him better faster so that it was mild instead of serious and that if he hadn't been admitted Monday he may have ended up there later anyways. But who knows. I kept him inside and in bed at home Friday, Saturday and Sunday and by Monday he was 100% better. He has 4 more days on his home medication but he is just as good as he was 2 weeks ago. But basically we we learned his we don't like his peditrician since they did the TB test so soon after the other one and started the whole mess to begin with. If he had never had that "positive" reading it would have just been a case of treating a child with pneumonia instead of the crazy it turned into. So he went through hell and I got reported to Children Services for basically nothing. Paniced his school. Everything. A week later, I am still livid about the whole thing. He's been in the hospital 3 times in the last year. 2 of those stays were needed because of his celiacs and stuff, but this last stay was just insane. Children services has also followed up with us at home and from the sounds of it they are closing the case. So.. it has nothing to do with celiacs, other then he has celiacs but there is the update on my son. Lets cross our fingers that he stays healthy now and back on track with everything.
  6. Child Back In Hospital

    So after everything about 3 or 4 weeks ago, the chest xray came back clear back thenso my sons Dr. determined that his TB infection was not active. Just simply that he had been exposed to it some where but didn't have the actual disease at that point. She started him on antibiotics anyways to make sure he doesn't get the infection. He takes it every day along with vitamin B12 medication now. And we talked about other issues. She got me referrals to a Dr. for his thryoid issue we discovered in the hospital and a referral to the ENT because of the nose bleeds that she decided in fact had nothing to do with TB since the XRay was clear. At school I sent in a box of gluten free art supplies and that box now goes with him to his art class, as well as his regular class. I talked to them at his school thanks to your suggestions and he gets 2 friends to sit at the table with him. It's a round table and they have to sit on the other side. No one next to him, but at least he has friends to talk to. When they had a project two weeks ago involving pasta art work, they had me come in as a volunteer and bring gluten free pasta for him. All the kids wore plastic gloves (to avoid any latex allergies for other kids) and newspaper was laid out on the tables. My son did his project at a table away from the gluten pasta noodles and one kid joined him at his table and shared the gluten free pasta with my son so that he had a friend with him during the project time. Then we all cleaned up the newspapers afterwards and through away the gloves followed by washing our hands. My husband and I got tested for TB, both negative. My son's teacher got tested, she was negative too. So no idea where the exposure came from. So things had been going good. He has been regaining the weight the last 3 weeks that he was losing and seemed to be his normal self again. Then Saturday night he complains that his stomach hurts really bad just under his left rib cage. I take his temp and it's 100.3. I wasn't to worried and told him he probably had a small bug or something. He eventually went to sleep. Then Sunday morning he wakes up around 8am and he seems fine. No pain, in a good mood, and I double check his temp.. It's 101.5. A little bit of motrin to help the fever and I make a note to observe him and perhaps call his Dr. Monday morning if fever contines. But I am just thinking maybe he is coming down with a cold. His nose is runny a bit. No worries. At 1pm he starts coughing. Mild coughing, not very often and just a little bit. By 2pm, he is coughing alot with a very doggy bark to the cough, by 3pm he was coughing nonstop literally every few seconds, coughing stuff up and having a lot of trouble breathing and running a fever of 102.5. By 3:30pm we were in the ER and he was given a breathing treatment and immediate treatment. So they did a Chest Xray on him and the chest xray, which the ER Dr. showed me, clearly has some kind of infection going on in both his right and left lung. Problem is the ER Dr. isn't sure if it's his inactive TB exposure now becoming active and the actual disease, which is possible so early in the treatment or if it's pneumonia. She says it could be either one and she can't be sure without testing the spectrum. The ER Dr. calls my son's Dr and discusses everything with her. My family Dr. tells the ER Dr to give my son a shot of medication, meant to treat penumonia and to write him a prescription for a breathing machine and albertol. (sp?) And to send him home for tonight, but to tell me to call her office as soon as they open in the morning to get him in right away. My guess is she decided that instead of dealing with having him transported to the children's hospital she works out of on a Sunday night, when she wouldn't be doing any testing etc anyways that she decided to have us come home with him for tonight and that she plans to have us take him over to the children's hospital in the morning to admit him. I could be wrong, but that's just my guess. Since he did test positive for the TB exposure and now 3 1/2 or 4? weeks later he is having problems and has a clear infection in his lungs that they will be doing a spectrum test to determine what exactly is going on. I realize this doesn't really have anything to do with Celiac but I just wonder, does having celiac disease make the kids more open to things like the flu, pneumonia, TB etc? And I think also I wanted to vent because we just got him feeling better again from everything 4 weeks ago and now here we are and he is sick again and they once again can't tell me exactly from what. I hate hearing things like, well it could be this or that, but we are going to assume it's this for now and treat it this way. No, I don't want these people guessing at what is wrong. I want to know that they are treating the right thing. Anyways, if my guess is right, he will be back in the hospital again tomorrow for a few days since I have been told that the spectrum testing in his age will require him being there for a couple days.
  7. Always listen to your instinct. My son had problems from birth (Oct 2005) with getting sick and constiptation. We were given every excuse in the book. First it was the formula, then it was being introduced to new food. Next we weren't giving him enough water, and then the excuse was that he was fighting potty training and that made him constiptation. He would get so backed up he would get sick. Then in Dec. of 2010 he had gone 4 weeks without a bowel movement and was totally sick at the ER. Finally his Dr. said "hmm maybe something is wrong" and started running test including the test for celiacs and that was only after I put my foot down and said you need to find out what is wrong. If you think there is something going on, follow your instinct.. we as mothers have those instincts for a reason.
  8. Child Back In Hospital

    So saw my son's Peds Dr. (Not the same Dr. from the hospital) and she redid the TB right away. She read it today and called it positive. Ordered a chest XRay for tomorrow. If the chest Xray comes back negative or clear she will put him on 9 months of antibiotics to make sure he doesn't get the disease and it just stays at him having been exposed to it. If it comes back positive, she said she will readmit him to the hospital under her care to run test to see what kind of bactria it is etc to make sure she gets the right medications for him. She went over blood test result with me and explained each one and went over the ones I was concerned about. She believes that his night sweats, nose bleeds and over all sick feeling could be a sign that the TB is an active infection and that the slight elevatued test results could be the indication to that. If the lungs are clear she is going to order a couple additional test to check a few things. We looked at the labs and he was tested for Lyme disease at the hospital Negative. I sat down with his teacher, principal and nurse today at his school and we had a long talk and discovered a few things. 1.) His class took a field trip a couple weeks ago (which I knew) to a pumpkin patch (which I knew) That field trip, pumpkin patch also included a petting zoo. Which included hay and straw, including a wagon ride... on, um, yea straw. (that I didn't know) 2.) His art room and teacher is seperate then his normal teacher and room. So while we have gone through and removed the gluten from there after the Play Doh incident at the start of the year, the school didn't think to do the same in his art class room. I am going in next week as a volunteer and going to see how things are run in there and go over everything with the art teacher. The principal has agreed to let me replace certain school supplies for his class to be all gluten free for the entire class. 3.) Kids were messing with his lunch in the lunch room. Only lunch room monitors, not his teacher in there. Kids were touching his food on purpose to mess with him. He will be eating at a table seperate from his class. Which I don't like. But like the principal explained, the only way to ensure it doesn't happen to move him from it. Fankly I think they should just put him at the end of the table with his class, next to a kid who will leave his food alone. But his princiapl wants to be 100% sure and safe. I feel like he is going to be punished, by having to eat alone. So anyways, between the possible TB disease and all the exposure at school, it's no wonder he got so sick. It's amazing he wasn't worse. I don't think I will ever figure out everything we need to watch for. :-/
  9. Child Back In Hospital

    Okay, so, I am wondering if anyone of you can help me figure this out. My son gets admitted on Tuesday morning to the hospital, by a Peditrician and 4 of his residents at the Children's hospital. He was admitted for all of the following reasons: Weight Loss- 3 lbs in 3 weeks with 1 lb happening from Thursday to Tuesday. Nose Bleeds on a regular basis Pain in his hand that he describes as feeling like it's on fire. Pain in his legs, wrists and arms that comes and goes on a regular basis, somethings making it so he can't walk without a lim or dragging a foot for a day or two. Pain in his grown area at times, sometimes with a bump. They include the groin pain with his other body pains. Night sweats which soak him, his pillow cases and sheets, even though he sleeps in nothing but his underwear and just a sheet covering him with a fan and air going. They also test for TB upon admitting him just for the heck of it. They do a BUNCH of labs (will get to that in a moment) to look for various things. On Wednesday at the 24 hour reading his tb test has grown a bump and they decide it might be positive and warn us about that. They tell us labs are starting to come back normal, but don't really share any of the lab tests with us. Just that they are *normal* Thursday, at the 48 hour reading of the TB test, they declare it will be positive and that infectious disease will talk to us etc etc but that they can't officially declare it until the 72 hour reading on Friday. They tell us most labs are back and are normal and stop looking for anything else. Saying TB must be causing the problems. Oh and they do a base line EKG reading. Some other labs haven't come back we are told but will not be back for a few days and we can follow up on those. We are also told that his pain is without a doubt being caused by his celiacs issues and that the neruologist will follow up with us on those issues after we are released from the hospital and that in the mean time she will prescribe amitriptyline for the pain for him. Gastrologist informs us that our son is really backed up (constipated, his main symptom for the celiacs, even though he is going daily) and needs to increase his miralax but is fine other then that. Dr orders a chest Xray to look for TB. Friday morning, the Dr and his 4 residents come in and look at the final TB reading. All 4 residents measure it and declare it to be at 9mm. The Dr. agrees. without measuring it. They then tell us it is border line on the neg/positive so that they are going to declare it negative, but to make sure we get it retested in a month because it's possible that he was just recently exposed to it and at the early stages of infection but it's not showing up on the Xray, and isn't big enough to be concerned positive yet. So retest in a month. They they declare they are discharging us since it's negative and we can follow up with our 3 different Dr in the next couple of weeks. (He pediatrician, gastrologist and the neruologist) Okay I ask.. what caused the weight loss, nose bleeds, night sweats etc. I get told, well, the night sweats can be normal in some kids and so can the nose bleeds. Weight loss is just celiac's related and not a big concern. All his labs came back normal, so we can follow up at home and don't need to worry. And oh, they aren't really worried about the nose bleeds, it must be resolved because he hasn't had one in the hospital since he was admitted. That was about 11am Friday morning we got told all this. I ask if these weren't things to be concerned about and were so normal, why was he admitted in the first place. I didn't get a real answer on that. Oh and his hand still hurts and feels like it's on fire, even though it's 3 days later. They say "the pain meds prescribed will fix that" 2 hours later, one of the residents comes back to our room to "go over everything with us" for his release. They tell us he has peripheral neuropathy and to see the neurologist within 2 weeks for further testing to see what is going on. That he is negative for TB, but retest in a month since it could be early in the infection, that his epistaxis is resolved (nose bleeds) and that he has subclinical hypothryoidism. Huh I ask? She explains what it is and says to follow up with his Peds Dr. next week and of course to see his gastrologist within the next couple weeks. Fine I say. She then hands me all his labs results from that week and leaves. The nurse comes in and as she is starting the discharge process, she is talking to us and all the sudden my son has a pretty big nose bleed that took us about 20 minutes to stop. The nurse calls the resident back up who comes in and looks more annoyed then anything and basically says she doesn't really think the nose bleed is that serious and to have a safe trip home. Okay we say. We go over everything with the nurse and leave. At home, a couple hours later, we are eating dinner with my son and he gets another nose bleed, took us about 25 minutes to stop, doing exactly as they showed us at the hospital to do. I just kind of look at my husband and shrug my shoulders. We were told nose bleeds can be normal for kids. What else can I do besides talk to his Dr. next week. Later on, he's been in bed a couple of hours and I go to check on him and yet another nose bleed. Still bleeding on his pillow etc and he is soaked in sweat. I get him up and spend 25 minutes to get the bleeding to stop. Clean things up and put him back to bed after holding him a bit. I then sit down and look at the copy of the labs they sent home and start doing research on some of them and this is where I get confused. They told me all his labs were normal and they really did test for everything. But the ones I question and don't understand are: His HCT.. is measured at 34.6 and has a L next to it for low. I looked it up and it is suppose to be between 47 and 56 as far as I understand.. So 34.6 seems pretty low to me and even says low right on there. His Neutrophils says L 31.0. Upon looking it up, it shows 45 as the normal range. His Lymphocytes shows H56.0. I looked it up and normal range shows at 32.5. His metamyelocytes were H 1.0. His Sed Rate Westergren shows H18. Looked it up and it's normal range is 0-15 and lower for kids. His LD shows H214.. I can't figure out a normal range for that one and of course his TSH shows H at 6.650 (which is the thyroid, that they told us about). In the mean time I weighed him this morning (Saturday) and he has lost another pound since when I weighed him Tuesday morning before the hospital) so that now makes 4 pounds in 4 weeks. I am not sure what all those lab test numbers mean.. but they told me his labs were normal and yet there are 6 labs showing as being H or L. 5 of them being from the Hematology part. Now, I understand that they may not be "real high, or real low" compared to the normal ranges, but no matter how slight, they are reading above or below normal ranges. I cound understand being told they are normal if just one was slightly high or slightly low compared to normal ranges, but 6? Then you look up what each one of these parts are for and all 6 of them being low or high have things saying they indiciate a possible infection etc etc. So I am let wondering isn't it possible these slight highs and lows could indiciate some kind of infection going on.. like oh say TB? Since he was so borderline? Or something else even? Maybe I am over reacting, but night sweats, nose bleeds, weight loss and pains are NOT normal. I don't care what they say. If he just night sweats, I would say fine, it's just a thing he has. Or just nose bleeds... But all of it combined? What bugs me is he was in the hospital for 3 days, and we bascially got told all those things didn't matter. If it's his celiacs causing the problems. Fine, tell me so and tell me what to do, but don't tell me there is nothign wrong and that we don't need to do anything for him. I don't want anything else to be wrong, but I just feel like there is. We see his Peds Dr. Monday morning. I have a lot of questions for him. In the mean time.. am I crazy for being concerned? Am I being over protective? Do those labs really mean nothing? I just don't know what to think. This is all over my head.
  10. Child Back In Hospital

    Hi Everyone. I appreciate all your comments, suggestions and thoughts. We have had an interesting... well I don't know if interesting is the correct word or not, but not sure what other word to use... a change of events here. Due to the weight loss and night sweats, his Dr. decided to test for TB. I am not sure what lead him to that test, but they did the TB test Tuesday night late just as kind of a "we doubt he has it but lets do the test anyways" thing and as of this morning when the Dr. measured it, he believes that the test is positive. It's 9mm. Anyways they are going to do some chest Xrays and additional blood test to determine if the positive test is accurate and if the TB infection is active etc. But, they believe that it is and believe that his night sweats, weight loss and nose bleeds could be caused directly by the TB. They have him on lock down in his room, he's not allowed out of the room because of it. The pains he is having is being looked into by the neurologist but they believe it's something to do with his celiacs like possible JRA and they are doing all kinds of test on his vitamins and looking for bleeding disorders and stuff. But the positive TB, if it is an active infection could explain a lot so we are waiting to see.
  11. Child Back In Hospital

    In our home we have a seperate place for food with glutens and food without glutens. Seperate cooking utensils, plates etc, as well as seperates pots/pans and surfaces for preparing foods. At school they have him eat at the end of the table away from other kids so their food can't get into his and I send his lunch every day. As far as we can tell he is not getting exposed to gluten, but his only sign when he is exposed is constiptation, so we never really know when or how he is exposed. He does not throw up, or get direhha etc. It's all constiptation. Plus being short, under weight etc. The signs of celiacs but not the sign of a recent exposure if that makes sense. He was doing fine and then suddenly he wasn't because of an exposure through play doh by accident the first week of school and then he was fine again. Now all the sudden he is losing a pound or more a week of weight, even though he is eating normally. They added pedisure to his diet twice a diet and he was still losing weight. Then he has these pains and stuff and it's just weird. They have a whole team working with him in here right now. His normal gastrologist, the neurologist, his peds Dr, and they are all working together at this point, ordering tests, discussing stuff. His GI dr. this morning informed us of some test, I can't remember what for, but some other disease that can come from Celiacs and my head is just spinning.
  12. My son was admitted into the hospital this morning. He has celiac's diease and is 6. After a month of problems they have admitted him for a series of tests etc. He has been having pains that really can't be explained, in his legs, arms and hands. Like his hand last night, he said it felt like it was on fire, it had a rash and then the rash went away. He has been losing weight the last 3 weeks, having nose bleeds and night sweats. A couple weeks ago his dr. did his celiac panel blood work and it came back in normal range, so they don't think he's been exposed to gluten. The pain they think could be due to damanged nerves or something and they are doing an emg on him in the morning, as well as a lot of blood work, including vitamins etc. They believing another auto immune disorder could be causing problems beyond the celiacs... perhaps caused by the celiacs. Any thoughts, ideas or suggestions? I am so worried about him and at such a lost.
  13. Just One Of The Many Reasons I Do Not Do Fast Food...

    It just goes to show how careful a person needs to be.
  14. Not So Gluten Free

    I just realized that I never thanked any of you for your helpful advice last year. I read stuff on this board all the time, but I don't type very much and I am sorry I didn't reply. I read what you wrote and just never answered back. All the advice last year was great and things have gone pretty good. Until he started kindergarten this year. He was in preschool last year and we adjusted.. but his symptoms have come back recently and we couldn't figure out why, until he announced that he had been playing with Play Doh at school. :-/ We have had another discussion with his teacher. I think it was an honest mistake, but one that has causged him to go back to having issues he had last year that we thought we had under control. I feel like we are back at square one.
  15. Our Story

    I found out I was pregnant with my 2nd child in Feb of 2005 because I was having serious pain and bleeding that I should not have been having. A trip to the ER and I was informed that I was pregnant, probably by only a couple of weeks, however, with an ultra sound they were unable to locate the baby in the uterus and the Dr. believed I had a tubal pregnancy. I was told that I should let them give me a medication that would end the pregnancy immediately and allow them to perform surgery. I refused and demanded a 2nd opinion. They admitted me to the hospital, in case my tubes errupted or something like that and the next morning a new Dr. came to see me and ordered another ultra sound. Boy am I glad I ignored their advice, since they found him in my uterus after all. It was determined the pain and bleeding was from an ovarian cyst and not a tubal pregnancy after all. So basically from the very start, my son wanted me to have an adventure with him. A few months later I started having other problems during the pregnancy and was put on bed rest, ordered not to do anything I didn't need to do. In August, I developed kidney stones that refused to pass and dealt with what felt like never ending pain. They didn't want to operate or do to much because of the pregnancy, so I spent a lot of time in and out of the hospital while dealing with the stones. Finally in October, although it would be 5 to 6 weeks premature for my little guy my Dr. decided to induce labor so that I could have surgery to deal with the kidney stones. On October 7th at 2:35pm my son was born and I passed my stones during labor. Things were not to be real easy though, because of his premature birth my son's lungs collasped and he was taken by Life Flight to a bigger hospital about 45 minutes away to be admitted to their NICU. They inserted a chest tube and put him in an incubator, set up with a feeding tube and I was told that it was possible he would not make it. Those were the hardest days of my life and a part of my life that has changed me forever. Thankfully though, it turned out fine, he got better and was able to come home where my little Angel was the light of my life. We first noticed a problem when he was about 4 months old. About the time I introduced baby cereal to him. He would spit up a lot, and didn't have normal bowel movements. Always constipated. My Dr. suggested that we put him on soy forumla and hold off on the baby cereal for a couple of months. He seemed to get better for awhile and we assumed it was the forumla. But as he got older, we reintroduced the baby cereal and started adding foods, he started having problems again. Mainly his problem was always constipation. Our Dr. would suggest increasing water intake, cut out apple juice, less milk etc. The problems never stopped. He would go a week or two with no bowel movement and then have a hard, painful one. As he hit the toddler years, the same thing. I kept bugging the Dr. about it and every time they had a new excuse. When he hit potty training age, the excuse was that he was fighting potty training, holding it in, causing the constipation. He never really threw up other then as a baby, with the exception of a couple of times (once at church after eating cheese crackers- they blamed a flu virus) and although he was very short for his age, they blamed genes for that, since I am only 4'11. Finally, in Dec of 2009 it all came to head when my little angel went 4 weeks without a bowel movement. 2 trips to the ER where they gave him enemas and miralax and said give it a couple days, he will go... it was 4 weeks and finally a 3rd trip to the hospital because he was throwing up and very backed up, where they did a different kind of enema with a long tube and a different medication we were able to get him to go. But it was the wake up call that his Dr. needed. No more excuses about potty training, not enough water and the wrong kind of fruits or juices. She did lab work on him and ordered several tests. The Baruimn enema test showed that he had control of his bowels and was pushing right, not holding it in and the blood work showed positive for Celiacs. She referred us to the Children's Gastorologist who did the endoscopy test and bioposy test. Damaged villa gave us the positve result for Celiacs in Feb of 2010. We got a simple phone call to tell us and a mailing in the mail with some basic information. All they really told us was, your child has Celiacs Diease and you need to cut out Glutens, Wheat, Rye and Barley from his diet. That's it.. No meeting with anyone about what we should feed him, or what we should do. Just cut out wheat, rye and barley. We were bascially left to figure it out on our own. During this time my husband got a job transfer and we moved to Florida and had to start looking for a new Dr. Which took time as we got everything settled. I thought we were doing okay with my son and his gluten free diet. I was feeding him mostly foods that actually said gluten free on them and he seemed to be doing better. He still got constipated sometimes but not nearly as bad and usually only a week or so at the most. I figured as he healed he would continue to get better. The only symptom he ever showed was the conspitation so we never had a way of knowing when he was exposed to gluten. But things went down hill again in October of 2010 as he started having additional problems. Suddenly he was getting nose bleeds during the day and at night when he was sleeping. He was getting bruises all over his legs that came out of no where. He was tired all the time, falling asleep during meals, wanting to go to bed and sleep. The constipation was back, him not being able to go for 2 weeks. He was getting night sweats in his sleep and bunch of other symptoms. His Dr. got worried that he could have another problem like luekemia or something and had us take him to the ER for some immediate tests. There, they admitted him and ran a bunch of Blood tests and meanwhile we waited to find out what was going on. Test after test kept coming back negative for anything, except for his Iron, which was so low that his iron storage levels were super low. His vitamin K was super low and he was underweight. The Dr. sat down with us one day with a lady from their neutrition area and we had a long conversation about what we fed him on his Gluten Free diet. During this conversation they determined that us using the same toaster for his bread and ours, the same butter, the same cooking pans etc, that we were exposing him to Gluten on a daily basis and just not realizing it. We had never been told what exactly we needed to do. We thought, stop feeding it to him and it would be fine, but were not told that he could still be exposed the other ways. The 3 days in the hospital with them doing his Gluten Free diet was almost an instant change for him. He was doing better and had gone to the bathroom by the time he was released and over the next few weeks, as we quickly bought a new toaster just for him, a new crockpot, new cooking ware, all marked for him and his food only, brought about quick changes in his health. Over the new few months, he started to grow taller, gained weight, became more active and had less problems. No more nose bleeds, no more night sweats. A whole new child. We are still learning and I feel some days as if I know nothing. Recently the past couple of weeks he has started having a few problems again and I could not for the life of me figure out where he was getting exposed to Gluten. He started Kindergarten this year and although they have made special adjustments for him, such as having a microwave in his classroom so I can send his meals and they microwave for him, and I send in Gluten Free snacks for special days, we didn't prepare for other issues like Play Doh, etc, which again, I didn't realize had Gluten.. touching the Play Doh, touching his food. We have once again had to learn some things which we only became aware of weeks later once the constipation, nosebleeds and night sweats returned. Also, he has been complaiing about his legs and arms hurting and the Dr. will be looking into possible things like arithis. So we are far from having it all figured out, but we learn from mistakes and adjust them. This coming Friday he has his blood work to see I guess what the Dr. calls his Gluten levels? and they will be doing another biopsy in October to see what his villas look like now and see if there is any sign of healing or what is going on in there. I believe this will give us a view into how he is really doing. I still have a hard time reading labels and get so confused so I still to mainly foods that say gluten free on the box (thankfully there are so many out there now adays) or home made foods that I make right here that I know are gluten free. A few months ago me and my other son were tested for Celiacs and both came back negative. Me because of my own health problems and my oldest because of how short and skinny he is. I am glad neither of us have it but on the other hand wish I did so I could tell my youngest that I was right there beside him lol. Sometimes he gets frustrated and upset when he can't eat what others can, but he understands why and is pretty good about it. There have only been a couple of times that he was truly upset about it and we quickly worked with him to make him feel better about it. It's not easy and I worry about what else could develop as a result of the years he went untreated for his Celiacs. It is now believed that he has had it since birth and I just think about all those times he ate things he should not have been eating if only the Dr. had listened to me when I told them something was wrong. A lesson is to be learned from it though. If you think something is wrong with you, or your child, listen to your heart. Do not let the Dr. put you off for a few years with excuses. Make them listen to your concerns. You are always better off getting tested for things and being told you are 100% fine and knowing you are fine, then assuming and finding out when it's to late, that no, you weren't fine. Always trust your heart. And me? I will continue reading all I can about Gluten free diets for kids and figure this all out.