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mom22kids

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  1. Let me tell you more what the doctor said. After the endoscopy he brought me pictures from the procedure. Showed me where it "looked a little like Celiac". Those were his exact words. The biopsy came back negative for Celiac. But the doctor wasn't convinced. He wanted to relook at the slides from endoscopy. He said he was not Celiac. But to me it sounds like there was damage and that is why he wanted to re look at the slides. The doctor's office is sending me her full chart. So, before I call back with any questions (keeping a log of all questions), I'm going to review the chart. I might even take it to another doctor to review. From what I gather, nothing else can cause damage to the intestines like Celiac. So any small damage would more than likely be Celiac. She's doesn't have typical symptoms of Celiac other than the rash, behavior issues, and canker sores in the mouth. I also want to say, that I feel I get no help from the staff. It's like if I ask a question, I'm putting them out. So inse, I come to the internet to clarify my questions.
  2. Would anyone recommend to do a test from Enterolab? Would it be any better or more accurate than the blood work? What about the lab results from the bioposy? Will this tell me how gluten intolerant she is if I do the stool test from Enterolab? I don't want to waste the money if it won't help.
  3. Her IgG was elevated, her IgA, and the Ttg were not elevated. The lab results said negative for Celiac. I will have to clarify more. Any questions that I should be asking? What about H. Pylori? Could this result in a gluten sensitivity? There is a possibility that this could be the case, as Gastritis in children is usually caused by H. Pylori. I've asked for all the results to be sent to me so I can review them as well.
  4. My daughter had an endoscopy and a colonoscopy 2 weeks ago. The lab results came back negative for Celiac, but she has Gastritis. I heard back from the doctor today because he wanted to look at the slides again. He said she has a gluten sensitivity and we need to eliminate large amounts of gluten from her diet. But after looking up Gluten Sensitivity online everything comes back associated with Celiac. Is there a difference? Is there a website that talks about the difference? I'm more confused now than before. I'm having them mail me her entire chart so I can have an independent review of it.
  5. I've been searching online for something to interrept the lab results but coming up empty. What are normal values for each of the following: (values are all for example 12.6 <10; 1.5 <5.0 etc. Anti-gliadin IgG Anti-Gliadin IgA Anti-Human TTG IgA Anti-Endomysial IgA Total Serum IgA (Is this the total for the above)
  6. There's been almost no weight gain in the last 10 months. They did find an inflammation in the bowels with the blood work, which makes him suspect Crohns. She has the typical rash that Celiac patients get and sores in the mouth - but no other symptoms. She has an almost constant need to eat every hour to hour and half or look out it is meltdown time. They did do a hypoglycemic test and because she had eaten right before the test and it showed she was on the very low side or normal so they will retest that at the time of the endoscopy, which is scheduled in 2 weeks.
  7. They did the Celiac panel. The others in the test were normal.
  8. Just wondering what exactly this means. We had the formal results of the test today. The doctor said the IgG was elevated but the IgA and tTg were normal. The blood work also indicated an inflammation in the bowels. He is not ruling out Celiac and said that is still very possible as well as Crohn's. What exactly does an elevated IgG mean when the others are normal?
  9. We just found out yesterday that our daughter (she's 5) tested positive for Celiac Disease. I've been reading everything I can get my hands on. I do have some questions and I apologize if they have been answered already. I just missed it. Will she be awake for the endoscopy? How long is the procedure? Will there be any pain afterwards or discomfort? We have the appointment with the gastroenterologist next week. My guess is that the endoscopy will be the next step. Are there any other parents whose children also have SID (Sensory Integration Disorder)? Once they are on the diet did you see the SID diminish any? My daughter has never complained of any pain, but then at one point she had a very high tolerance to pain. More than other children. Now she is the opposite, but doesn't complain of any type of pain on the inside of her body. She only gained 3 pounds in the past year and that is what prompted me to ask her doctor. Actually the pediatrician she had before said she just had a very high motabalism and that I should be lucky. I knew there was something not right. She constantly ate (more than adult) and never seemed to gain weight. She doesn't have any of the symptoms except low weight gain and in fact slipped down on the percentile chart from her last check up. We do have behavior problems, but at the time we attributed it to RAD. We went through therapy and do feel she had RAD, but still see moody behavior, etc. Behavior that I have read about that is typical with celiac disease. How quickly once on the diet did you see an improvement? Is there such thing as different levels of celiac disease? For instance, mild? etc. Easter is coming up...what do you do? We have never done alot of candy in the basket, we still do some. Are there any websites on celiac disease that are specific to children?
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