Concerned_mm replied to Concerned_mm's topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsThank you so much for both of your replies. I was afraid that we would just have to keep switching doctors until we find one that takes me seriously and that seems like what both of you went through as well. My daughter was only breastfed for a month (2 weeks exclusive followed by 2 weeks supplementing) because she was not gaining weight and I had supply issues, so she would not have been exposed to gluten again until she was 8 or 9 months old. I don't know that we would ever get a positive test because I just don't think I can keep her on gluten for that long. Each time we have tried bread we have stopped within a week. She is so happy normally, so it is hard to see her miserable. If she had been on gluten longer I think it would be easier to justify just a little more time until the tests. Since I couldn't even get tests scheduled, I already took her off gluten this time so she wouldn't have to hurt while I got the doctor issue figured out. How long would she have to consume gluten and how regularly for a good chance at getting an accurate test result? I am sure it is dependent on each individual and their age, but do you know if it is on the order of weeks or months? I would be excited to find an allergist like you mentioned who was helpful and would just consider her symptoms and then point us in the right direction. I am not hopeful to get positive test results with her being so young. I know they can't diagnose a particular intolerance based on symptoms without test results, but they could at least guide us. I am hoping that she still has a chance to outgrow some of her intolerances since she is still so young, but in the meantime I think we are just going to have to keep searching until we find a doctor who is willing to help. Thanks again!
Concerned_mm posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsMy daughter will be 11 months old next week. She has been diagnosed with GERD and milk protein intolerance. She is also allergic to oats (exposure results in hives) and has eczema. She has been on Similac Alimentum since 4.5 months. Because of the milk protein allergy, we have gone slow with the introduction of solids. About two months ago we introduced bread and she would have it occasionally. When she started eating bread more regularly, I noticed that she became more and more irritable and fussy. I talked to her pediatrician who said there was no way it was the bread and she must be teething or constipated or something else. I followed my instincts and cut bread (the only gluten containing thing she ate) from her diet. She improved over the next few days and became a happy baby again. I assumed since the doctor said it was unlikely to be the bread and the bread was store bought that there could be some cross contamination with milk even though I read the label very carefully. Several weeks later, we tried again this time with homemade pancakes to insure that milk was not the culprit. Everything seemed fine at first except for some extra gas. On the third night, she woke up screaming in the middle of the night and would not stop crying and pulling her knees to her stomach for two hours. The next morning I called the doctor again who reaffirmed that she did not think it could be related to the pancakes and suggested I keep a food log and wait a few weeks and try again. So, I waited and we tried pasta and noticed increased gas but nothing severe and after several days we tried bread (homemade so milk was not an issue). She went from a little extra gas to extremely fussy and irritable until she was crying everytime she passed gas and could hardly be set down. I cut the bread and pasta out again and she has been much better. It seems as it takes her eating a wheat containing food for several days with no symptoms at first and then steadily going downhill. This is why the doctor does not believe it is wheat products. She says any intolerance would show up more quickly. I was hoping that some of you who have been through this with young children could help me out. First, does this sound like it could be celiac or another type of wheat intolerance or am I completely off base? The doctor keeps treating me like I am nuts, but three times in a row is more than a coincidence. Second, I would like to take her to an allergist or a dietician (we see a GI doctor and they said they couldn't help), but all of the pediatric allergists in our area require a referral from the pediatrician which we can't get. Which would you recommend seeing? Also, do you have any advice on how to find a pediatrician who would be more sympathetic and give a referral? I know you are not supposed to cut out gluten until you have them tested, but I have read testing at this age can be unreliable and I just can't let her suffer anymore. I am sorry this is so long, but I was trying to be complete. Thank you for reading it and any advice you can give will be greatly appreciated.