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About cgilsing

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  1. Thanks fo the info about the scope! If it comes down to it, I will push to skip it. Here is the link I ws reading. Particularly the second paragraph under small bowel biopsy. http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-diagnosis-tests
  2. I hear you, Its not an easy decision. We should get back our boys' results in a week or so. Im probably jumping the gun even worrying about it before then. I hope your son doesn't have too bad of a day!
  3. I do know that at least in the beginning there was more going on than just celiac disease or a gluten intolerence because i was gluten free during my pregnancies and neither of the boys had ever been exposed to gluten until they were well over two. However, gluten would have fallen squarely in the do not eat list for them because it is a protien. You both mentioned trying the gluten-free diet before getting a conclusive diagnosis. It is so tempting to do, and my husband and i have talked about it. My fear is that if it is celiac and we cure it, they will never get a diagnosis. The thought of ever intentionally eating gluten to me is horrible, and my doctor has said a person would have to do it for months for it to show up on a scope. If a cure was ever developed the kids wouldnt be eligable for it without a diagnosis....
  4. Both my children (now 3yo and 5yo) were diagnosed with severe protien allergy as infants. They were on nutramigen AA for the first year, and elecare until they were 2. Other than their formula they were on a strict meat free, milk free, egg free, soy free, bean free diet. At about two they were each given a clean bill of health. However, we have some lingering problems. They are both very thin, prone to diarreah and skin problems. I have celiac disease as do several other people in my extended family. Because of all this my sons went in this morning for the celiac blood test. Because it has been so long since i have been diagnosed, I went home to do some searching in hopes that the test is now accurate enough that they wont be subjected to the endoscope. I didn't find anything conclusive on that (and if anybody knows please tell me!), but I did find an artical that said that a biopsy of a child with a milk protien allergy is indestinguishable from that of someone with celiac disease. It got me wondering if there is a relationship between children with milk protien allergies and the development of celiac disease later. Does anyone know?
  5. Happy birthday and may God bless you today

  6. I've used teff flour before to make injera bread for Ethiopian dishes, but never whole grain teff. I was at my health food store looking for teff flour one time and they only had the whole grain, and she suggested grinding it myself. Sounds like a lot of work, but it's worth a try!
  7. Thank God none of us have a nut allergy Luke gets all of his protein from his formula. It's broken down into individual amino acids that he can digest. So I'm not worried about trying to fill that gap for him. For me, I've gone this far without having to be a short order cook for my family (although it seems like everyone has one need or another), but this might really require it. I just want him to at least have food that LOOKS like everyone else's. He's little enough not to know the difference. I made his pasta last night without meat, but the rest of us had hamburger in it for instance. Luckily the doctor says Luke will outgrow this for the most part. Worst case scenario, he won't ever be able to tolerate milk.....and compared to this, that's not too bad. Thank you everyone for your suggestions and help!
  8. Yes, all meat. He can't tolerate protein. He started passing blood the night we brought him home from the hospital. We took him to our pediatric GI (who is the best in the area), and he diagnosed him. He gets most of his nutrition from a speciality formula that costs us 50 a can (that lasts about 3 days). He will probably be on it much longer than babies are normally on formula. But he's getting bigger and WANTS regular food. I forgot to mention that he can't have beans either. Thank you everyone for your suggestions! I think tonight I'm going to try him with gluten-free pasta and tomato sauce.
  9. My 11 month old son is allergic to soy, eggs, milk, and meat. This is probably something he will outgrow by the time he is three.....but until then we need to find something to feed him. I have celiac disease. Does anyone have ANY recipes that would fit all of these criteria? I could add non gluten free things to his if I had to, but I'd prefer if there was something we could all eat.
  10. ginnybean, I'm really sorry that your family is giving you such a hard time about this. It is not something you chose, and your husband should understand that. Does he understand that gluten free isn't a vegetarian diet? If I was you, I would make it perfectly clear to him that he is going to be finding his manly self in the kitchen cooking his own dinner if he can't be more supportive. After all, meat and potatoes are both gluten free anyway!
  11. Shanmegjilal & foodiegurl, It really does get a lot better. You will never get away from reading labels all together, but I would say I don't have to read the label on 95% of what I eat. I just know what I can and can't have, what brands are good and what aren't. I haven't had an accidental glutening in 6 months or so either (and I'm very sensitive). As far as eating out and eating at friends houses go, that also gets easier! Your friends will all eventually understand you have special needs (even though they won't totally understand your diet). We have found that we usually get a call from the hostess before we come over asking about what I can and can't have. Your families will end up being as skilled as you are at gluten-free as well. There are a LOT of restaurants with gluten free menus these days too! Chili's, Outback, Biaggi's, PF Chang's and even Hardee's are great places to find gluten free food. Just ask! Oh and Shanmegjilal, gluten-free doesn't equal deprivation. My family eats gluten free right along with me! I just cook meals that are naturally gluten free or that I can easily substitute ingredients such as rice flour in. Another good tip for eating with the family is to have some Tinkyada pasta, rice flour, and nut thin crackers on hand. Those are all very good products and your family will never suspect they are eating gluten free. The only non gluten free products I buy are sandwich bread and dinner rolls. You have enough to deal with right now. You shouldn't have to double your cooking, witness things you want, but can't have, and risk accidental glutening. If you would like, feel free to e-mail me and I'd be more than happy to help you build some meal plans
  12. ang1e0251 - You mentioned how your husband looks out for you. I'm lucky enough to have a husband that is the same way. No one has seen the transformation in my health like he has, and he knows how important it is that I stay away from gluten. He is a skilled label reader and knows all the right probing questions to ask at restaurants I should list that as another positive of celiac disease. I'm reminded often of what a great guy I have.
  13. I haven't been on this site in forever, but 4-5 years ago I was on here a LOT. It all seemed so overwhelming at first and this site helped me learn the intricate details of living with celiac disease and introduced me to a lot of great people who I could relate to. As time went on, living with celiac disease became second nature and I spent less and less time here. I realize that there are many people here right now that feel the way I did a few years ago. I was just thinking about how easy it was at first to dwell on the negative (because that was all there seemed to be) in regards to my new lifestyle. It was downright depressing. As time has passed though, I now realize that celiac disease has actually enriched my life in ways I never could have imagined! Not only am I healthy now, but I also have a new passion for cooking. It is truly one of my great loves I've tried things that I never would have if not for celiac disease. I've ate Thai food, and I've cooked Ethiopian food (even fermented the teff right in my kitchen!). I learned Italian (albeit very broken) because I was scared I'd be glutened on my trip if I couldn't communicate. My husband and I have met some GREAT friends who own a restaurant in our town because we were always asking about gluten-free. I live healthier than I ever would have because I'm now knowledgeable about what I eat. When you are faced with such a huge lifestyle change as going gluten-free it is very scary, but I want everyone who is just starting out to see that it can really be a huge blessing in disguise. Really, at this point my diet is just second nature. I don't even really think about it. The lasting effects of it have been nothing but positive. Could any of the other people who have been living with celiac disease for a while add to this how celiac disease has positively affected your lives?
  14. Currently, no he is not gluten free. He was gluten free of course as an infant though and the symptoms were still there. We also have tried lactose free, and soy free on our own. Ian has been on the medication for a week and from what I have read online sulfasalazine is supposed to work in 2-5 days. I'm waiting for a call back from the Dr......
  15. I suppose this isn't exactly a celiac disease question as my son has already been tested and the results were negative, but I have received so much advice and help from this community and I'm hoping that someone has some insight into our situation. My son is 21 months old and has always had a digestive problem. When he was a newborn he had up to 10 dirty diapers a day, projectile vomited, and had more gas than I have ever seen an infant have. Our pediatrician was completely unconcerned. With time the vomiting stopped and the dirty diapers slowed to about 3 a day. By a year old he was a frequent pooper, but we didn't think there was anything that serious wrong. It started getting worse again though. His poop became less and less solid and less and less digested. It started burning his butt from time to time as well. Now he has 4-5 dirty diapers a day, they all burn his butt (sometimes he has open bleeding blisters), and they are generally runny and undigested. We have gone to a pediatric GI on our own because our pediatrician is useless. He did an endoscope on Ian a few weeks ago and reported that he has significant inflammation of the colon and the secum (where the small and large bowel meet). He started him on a medication called sulfasalazine and diagnosed him with unspecific colitis. The problem is that we can't tell that the medication has done one bit of good. He had 4 dirty diapers today and his butt is so sore he won't sit down. What do we do next?? This guy is the only pediatric GI in 300 miles. I'm scared we aren't going to figure out what is wrong. Does anybody have any suggestions?
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