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jfem4

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About jfem4

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  1. Thanks for all the info... Any news yet?? The waiting must be so hard.... here's hoping you get good news and good news quicky!!! J
  2. Thank you for clearing that up!!! Jane
  3. Rez, Thank you for your amazing post... I have been so blessed here with an amazing amount of info and support. The MD's didn't do the endoscopy b/c they were looking for Celiac...they thought it was reflux, but when the path came back-it pointed toward the blunting of the villi and the deepening crypts in the duodenum. They are puzzled at why no lymphocytes were present. He said if he had all 3 , the pathologist would have diagnosed him w/Celiac..so now we are getting the blood test. What is a full panel of blood tests? THe MD is calling me back today because I want to have them add a CBC to chekc if he is anemic, and just to check to make sure everything else is ok. What is ttg? So having what he says are 2 out of 3 "markers" doesn't automatically make my son have Celiac? But he does have a gluten-sensitivity or intolerance, right? What is a positive EMA? Blood test? How do I make sure I am getting that one done? WHo si your MD in Chicago? We know a great MD there,too, not a GI though. When will you have the biopsy results? What is EE? I'm sorry for all the questions, but I'm just learning all the terms... : ) MD # 6??? WOw that is a nightmare, but it seems as though you have found a great one, finally!!! I completely understand about the Chron's... Please keep us informed about the results, Good Luck and many,many Thanks!!! Jane
  4. I'm calling him today...just ordered his book.... I need a second opinion..and the MD that I am using is from Mt.Sinai...It will be interesting to hear what he has to say. Thank you very much for this information... I am so stressed right now...I just want to find out what it is, and start to deal with it..you know? This in-between is killing me!!! I'm so h apy to have found this place!!! Jane
  5. Laura, He said that the pathologist siad there had to be 3 things present: 1. the blunting of the villi 2. the deepening of the crypty 3. the lymphocytes present... The lymphocytes were not present so he would not say that it was Celiac... This disturbed me...how could one thing ,missing make them so unsure??? I know he has Celiac, or Gluten Intolerance...( still don't know the difference) But I ammsure he has something that relates to one of those...now that I am really being vigialnt about watching him-it's so obvious to me. I'm in NY...soes anyone know of any good MD's that specialize in this?? Jane
  6. So did she test positive to the blood test? Have you noticed a change in her since the diet change?
  7. The "no lymphocyte" thing is puzzling to the MD's as well... I asked if he could have missed it and he said no.... THat there were no lymphocytes... Could he be gluten intolerant, but not Celiac??? Please forgive me if that is a stupid question...this is truly not my area ( I'm in maternal health/ob/gyn) WHat's the difference? If so, what would that mean? How would they determine that? Could that be it because he doesn't have the lynphocytes?? I'm happy about the pasta...do you think my other kids will like it, too? Do you cook a separate meal for everyone?? The thing is he's NOT miserable at all... he's my happiest/most vibrant, energetic child... THis is why I just don't get this... The blood test is supposed to be next week, but I'm trying to get it for Tuesday or Wed of THIS week... Did your children have endoscopy for diagnosis? Thanks again for your time, with 6 kids, I'm sure it's limited!! J
  8. Carla, Thank you for that information... I'm a nurse practitioner, and I needed to read something like that... The pathologist said the villi were blunting...so that would make sense. I guess what I dont' understand is can you have celiac disease without having the lymphocytes present, and will they eventually be present. OR will he just present this way? The classic Charlie was last night...we ate out and he had his usual pasta....within minutes,, he vomited..He had said that prior to ordering that his tummy hurt. HE had a big lunch, so he could have been full. Anyway, 1 minute after he throws up, he wants more,so we order him more, and he proceeds to order another plate of pasta and eat it as if he never ate in his life. He went on to have a restful evening, played, went to sleep and hasn't had an issue since. WHat I don't get is, if the gluten is causing him to get sick, which I beleive is the cause...why after he ate the past the second time, didn't he vomit?? HE did't even complain of a stomach ache the rest of the night... This is so confusing to me, and the probelm is that our MD is away!!! Thansk for being so helpful... I apologize for all the questions... Jane
  9. Wow!!! Thank you guys so much for responding so quickly. I am overwhellemed, scared, and just don't know where to turn. Did your husband ever feel this way as a child? So he presents with just nausea? But after the diet, he felt better? Charlie doesn't really have many symptoms except the vomiting, and as soon as he does, he's fine and resumes his eating. I'm just worried that he is damaging the lining of his duodenum...and his symptoms will get much worse. Is that what hapens? Eventually he'll present with those classic symptoms? SHould I start him on the gluten-free diest before the blood test or will that alter it? I'm just a bit concerned that the MD didn't know what it was...I mean, if he presents with 2 of the 3 markers, what else could it be right??? I know I have a ton of questions, but I don't see him until the 13 th!!! Thanks again to the both of you!! Jane
  10. Hi, My son Charlie had an endoscopy last week. The MD called yesterday and wants to do a blood test for Celiac disease. His biopsy came back with 2 of the 3 markers for thise disease. He had crypts, something in the villi, but did not have lymphocytes... his duodenum was the site that was affected...nothing in the stomach or esophagus. The pathologist feels that he needs to have all 3 to be diagnosed. So they are taking a blood test in a week to confirm or rule this out. I don't know anything about this disease, and I'm not sure if he has the symptoms, but he may not need symptoms right? He is 6 years old...he's about 58 pounds and is in the 95 % for his weight and height. He has a voracious appetite, is full of boundless energy. He's always been a gaggy baby/child. If he smells something/eats something that isn't right, he'll vomit. Latelty, in the past year, it has progressed to very frequently-about 1-2 times per week of going to bed, and within a hour or so, getting up, not aware of anything ( night terror), holding his stomach, crying in pain, then eventually vomiing. HE does not remember anything. There are times when he will vomit immediatly after eating...he feels great afterwards and usually will ask to eat again. His all time favorite food that he eats everyday is pasta...which I read could be the culprit? He will go through aperiod where he will vomit every day, or night, for about a week, then nothing for months. The doctors are stumped a bit becasue he doesn't present like having Celiac in some ways, but does in other ways. I have no idea what he meant by that. I am at my wits end, worried, scared, anxious etc... This is all new to me..I have 3 other children, 8,9 and 11...none have ever had issues.... If anyone has any ideas, I would be so greatful!!!! Thank you in advance for any thoughts you may have.... Jane
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