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About mom2easton&eli

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  1. Thanks all! I knew I could get better info here than from anywhere else. I don't fully understand the different tests and everything but my hubby just picked up the records from the Dr's office. He's not home yet but I'm antsy to look over it. I might have more questions when I get the tests in my hands. I know there are tests that can be false positives and what not so I'm sure I'll be back on here in a few hours. Thanks again for all the support.
  2. Thanks so much for your reply. It is very frustrating. Especially knowing we had our answer 3 years ago after trying to do everything right and were given the run around. The last 3 years have been difficult behavior wise and potty training...that's a whole different story. To think that we could have just enjoyed our child and had peace. I think I will just use that test as my positive test that I need in order to get friends and family to take it seriously.
  3. 3 years ago, my son had blood work done. The doctor said it came back "slightly positive" and asked me if I would like to persue the biopsy. We did and it came back negative although the gastro doctor and everyone else for that matter treated me as if I were crazy for having the test done because my son looked healthy and endoscopy only took about 5 minutes so I feel there is a chance he could have easily missed something. We were referred by his pediatrician because he had dropped from the 75th to the 25th percentile and has behavorial problems. Well, after the negative biopsy and being treated like a crazy lady, I dropped the notion that my son had Celiac Disease and I never looked back. Although, I kept it in the back of my mind that if ever there was a problem in the future, I would get him re-tested because I knew that 2 years old can be too young to get a positive biopsy. Fast forward to the past 6 months. Now I have Celiac Symptoms believe it or not. I am fully convinced I have it. Stomach aches after eating, horrid joint pain, fatigue, etc and feeling so much better with out the gluten. Well, during these past few months my son has also been taken off gluten and it made a world of difference in his behavior, in his underwear (on gluten he basically has to change his underwear after every BM due to not being able to hold it in until he gets to the toilet) and he actually GREW a lot! So I am convinced he has it. However, I don't feel that I can ask him to make this life long commitment to being gluten free without having absolute proof. I would always wonder if it was really necessary and being that it is so difficult and restrictive, it would break my heart not knowing. So, we thought we were going to get insurance and I got him back on the gluten to get him tested and our house is once more a nut house, his underwear is skidded and just today it dawned on me that his legs are looking bowed. I googled that and I found out about Rickets then read that Rickets can be from Celiac Disease. Well, we still don't have insurance and my husband is going out of town for 2 weeks and I don't know if I can handle my son being on gluten because he is such a good kid without it and quite the opposite on gluten. So finally, in summary: What is a slightly positive blood test???? Should I get my son retested or should I get the gluten out of his diet forever???? I feel like I"m going crazy over this. I feel like it is hurting him but I don't want to hurt him in other ways if he commits to this diet for life not even needing it. And here is just a little side note if you are still awake and if you have read this far: The other day, his crap ran down his leg and he said "I want to get tested. My body is telling me to get tested!" He's almost 5. It was so sad. My husband is out of work due to this wonderful economy so that is why we are uninsured and also, I believe that is why my symptoms have begun. Good old stress.
  4. Thanks for your answers. I am in denial so after feeling well I ate take out from my favorite place. It is a chicken salad with a few ingredients that I thought wouldn't contain wheat, but it has a tortilla and I didn't eat the tortilla. Well...I got sicker than a dog! Maybe because the salad had touched the tortilla. I don't know. A few more days gluten free and then feeling so great that I told myself nothing is wrong so I ate pizza. I paid dearly. I realize that some ingredients in Frosted Flakes contain wheat, but I have noticed that the less "pure" the wheat seems to be, the less it bothers me. Wheat bread is an absolute killer. Anyway, I guess I will just stay gluten free since I never get sick while gluten free and because like you, I don't want it on my medical records. I know how it is trying to get insurance. We are self employed and I am scared to have ANYTHING on my records. We are getting insurance soon. But looking back on my family history, my mom has had stomache issues her whole life and has depression, achy joints, etc. She doesn't eat whole wheat/grain anything the way I did so I believe that is why I have been sicker than she gets. My grandmother passed away last May. She had a broken bone in her back and the doc mentioned possible cancer and she basically just decided to check out of this world instead of deal with cancer. I'm not kidding. It was really like that. She died a few days later . But, my mom said that she thought for a long time that my grandma probably had stomach cancer because she had hard things in hur tummy and stomach problems. My son has been tested for this. His blood tested slightly positve and his scope was negative. He was only 2 so I always had Celiac in the back of my mind knowing that 2 could be way too young to diagnose. As soon as we get insurance I am getting his blood tested and my other son as well because now I am convinced I come from a family of Celiacs.
  5. New here. Actually, I stopped by a few years ago when my son was undergoing the biopsy which came back negative but brought me awareness of Celiac. Now I am back and this time it is for myself. Let me tell you how I got here. Only for the past few weeks have I been getting stomach pains after meals. The pain is a burning sensation from front to back. At the same time, I feel I need to have a bowel movement, but it is difficult. Usually, during the time I am having stomach pains, I do have a bm but my sypmtoms do not go away after the bm. They go away after 2-3 hours. I have no health insurance but did many a google search and chalked it up to gallbladder or ulcer. Then one day I drank a diet Dr. Pepper and ate 2 pieces of bread. The pain was so bad that I dumped out all that was left of my diet dr. pepper stash because I thought it was causing me the pain but the pain after meals did not stop. A few days later, I was so scared to eat but I ate a few bowls of frosted flakes and stated to my husband that strangely, cereal does not make me sick. Later, I made a dessert and ate some of the pudding and cool whip and had no symptoms. A couple of hours later, I could not stand the hunger any more and grabbed what I always grab when I am starving. 2 pieces of bread. I regretted it almost immediately because I was in so much pain after eating the bread. That was Easter Sunday. I reflected on what I had eaten that day and realized that Frosted Flakes are made out of corn which would explain why they don't make me sick and realized that almost for the first time ever, I had not consumed wheat that day until I ate those 2 pieces of bread. Later, for dinner, I ate cheese potatoes and nothing else and for the first time in weeks, I was not sick after a meal. I had not consumed any wheat during that meal. I went gluten free for a few days and my symptoms were very, very mild. Almost not even noticable. I felt so good that I told myself there is nothing wrong with me so today I ate some cake, and left over sphagetti and I paid for that for a couple of hours with stomach pain. So if you are thinking that it sounds obvious that there is a problem here and are wondering why I am here, I do have a question. My question is: Would the pains be so immediate after consuming wheat? From what I have read, it can take days to show symptoms so I am wondering why the stomach aches are immediate. Do you think it is something else like and ulcer or have any of you had immediate symptoms?
  6. The hospital called Friday and Easton can go in this Tuesday for a biopsy. Yeah! So now that we do not have to wait like I was told, I am just going for the biopsy, that way I will know for sure. Thanks for all the advice! I am sure I will be back with more questions because I think he has it.
  7. Oh that sounds interesting. I am glad research is being done. Yeah I can understand where you are coming from on Enterolab. This is all so confusing.
  8. Hi just 2 more things real quick; my son, his name is Easton by the way, has always been in the 40th percentile for weight and at his check up remained in the 40th something percentile that is why I have not brought up weight as concern, just the height. Also, what do you think about entrolab or whatever that thing is I have been reading about? Thanks.
  9. I agree that percentiles are not for competition. The main reason for my concern with the height is because that was our first red flag that something is wrong. My husband is 6'3" tall and to have a son in the 40 percentile who has always been in the 70's, is a major concern to me. Also, my son has a younger bro who is 6 months now and is wearing pants that my 2 year old had on the day my youngest was born. He is in the 70th something percentile for his height. Also to address the obesity issue, we are far from obese. I am 27 and after 2 kids still wear a size 4-6, my husband is almost underweight. He is 145. I am trying to talk him in to getting tested for Celiac because he is having some kidney pains and has had his urine checked and there was nothing wrong with his kidneys. He has also had learning issues in his childhood. However, those issues have helped him to think "outside the box", making him pretty successful at being self employed without a degree. Oh and I also want to clarify, I am very, very grateful for my doctor. I mean no disrespect to him whatsoever as I am seeking possible alternatives to the advice he has given me. I am so glad he had my son tested and has brought this disease to my attention. Without him referring us to be tested, my son may have lived a life of being sick and not thriving. I just want to do what is best for my son and what my instincts tell me to do (insticts and other's input, that is).
  10. Wow thank you very much. You are all so informative. Thank goodness for the internet.
  11. Thank you. I will take everyone's advice into consideration. My husband and I were thinking we might try a combination. I wonder if we could go gluten free for a few weeks and see if he improves and then just feed him a small amount of gluten after that for the biopsy? I do not know a thing about this so that may be a crazy idea.
  12. Okay, thank you both sooo much. I have already started the diet! He is eating rice as we speak. This will be so hard. He is not enjoying it much, but I think he will gut hungry enough. I have to hide all my birthday cake so he will not be asking for it. It looks like I will be shopping at the health food store tonight. Thanks again.
  13. My son just turned 2. At his 2 year checkup it was noted that his height has decreased by 30% on the charts and he has had loose stools for the past few months. The doc suggested we do a blood and stool test. They tested for Celiac and the doc was very vague with info on the subject and said that one part of the test came back positive, and one part of the test came back negative. I had never heard of Celiac and asked the doc how to spell it. He reluctantly told me and then said that once parents get online and find more info on the subject, they eliminate wheat from the diet, thus causing a negative biopsy. He said the hospital will be calling me this week to set up an appointment and that they are scheduling in to December at this point. After doing some online research I do not feel right about continuing to give my son things that may be poisoning his little body. I do not feel I can sit around waiting for a phone call to set up an appointment and then sitting around again waiting until December to do the biopsy. I saw that some people on here had mentioned to skip the biopsy and just try the diet. Well, now I have a ton of questions. If part of the blood test was positive, then how likely is it that he has it? Is the biopsy test for other allergies as well as the gluten? Do I need to get the test in order for doctors to track him successfully? Do I stop giving him milk products in the beginning assuming I decide to just go ahead with the diet? The reason I am so concerned is because I do believe my son may be having some behavioral problems due to this and I really want him to start growing again. Will his growth be stunted forever, or will he go back up to the 70 percentile where he always was? Sorry so many questions.
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