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seekinganswers

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  1. Thanks again. I will look around the main site more and get a couple books. It is definitely frustrating, and intimidating looking at what 100% gluten free means. I think KNOWING would make it a little easier to take. Oh, well. Thank you very much for your help.
  2. Thanks. That's kind of what I thought. I was hoping before putting all the effort into going 100% gluten-free to get a certain diagnosis, though, so that is disappointing that it's not definitive. Is it still worth pursuing or not - what's the false negative rate in young kids? The pediatrician didn't mention it at all; I just found out about it from online searching. If we go gluten-free, then what? The ped. said if it's just intolerance and she's not exposed much she could outgrow it. Do we try gluten again every few years? I'm just thinking if we never get a diagnosis and never reintroduce, we could be killing ourselves to avoid it unnecessarily, and when she goes to school in a few years having them vigilantly accommodate an unconfirmed condition seems iffy at best. Sorry; this seems so overwhelming with the extreme nature of it. Also, is there like a basic "How to Live/Get Started With Being 100% Gluten-Free" page or site? I have a lot of questions on what I'm sure are the basics regarding food, common associated issues, dishes, etc. Thanks again!
  3. Hi, I found this site tonight and already found some helpful info. I am hoping someone can help me figure out what our next steps should be. Sorry this is so long; I didn't want to leave anything out. I think my baby girl has a problem with wheat. She got super constipated when we introduced wheat cereal (I attributed it to the increase in solid food) then better when we ran out and I just used the rice and oatmeal we had plenty of (I attributed it to her body getting used to eating solids). But then when we started the wheat again the severe constipation returned, so that's when I first suspected wheat. But I was/still am breastfeeding and I had been eating wheat the whole time, so it didn't seem like a certain or strong issue. But I stopped the wheat cereal again and the constipation cleared up again. She also once got a hold of a couple goldfish crackers at a play date (before I suspected wheat of anything) and got hives that afternoon. At the time the doctor made me realize it could have been the dogs, however we have since been around more dogs and even returned to that house with no issue. No other time has she ever had hives; also they didn't bother her at all. It is possible she got a hold of something else I didn't see or perhaps reacted to dye (they were the bright colored ones) or something else. At her 1-year appt I mentioned all this to the doctor. This, combined with her not gaining weight basically during the time she was on wheat led her to suspect Celiac, as I did. She had her blood tested for Celiac - sorry, don't know which test(s) - and allergies (top 8, I believe). They came back negative, but the doctor mentioned that false negatives are common in young children. She advised me to reduce/limit both of wheat intake but that it didn't seem necessary to go completely gluten-free. Also, not sure if it's relevant here, but when we introduced cow's milk shortly after she turned 1 she got bad diarrhea, so we stopped that. She currently gets almond milk in addition to nursing. She also gets some plain whole yogurt which she seems to tolerate fine. Also, with the bloodwork she had a low IgB, I think, for which she is being referred to an immunologist. Anyway, her constipation has returned (almost 15 months old now). So I'm thinking - If she has Celiac, I'm not doing enough and she's starting to react to gluten coming through the breastmilk and from cross-contamination in oats, etc. Or, on the other hand, if she doesn't have Celiac, we're wasting energy avoiding wheat, etc to the extent we are and not looking for the real problem. Thank you if you've read this far! So my main question is - is getting an endo a definitive test? Should I be looking for a gastroenterologist? Also, should we all (myself, husband, 2 older kids) just get one done too? Does it sound like it's probably Celiac? Are the hives, milk issue, and/or IgB levels possibly related to Celiac? Anything else I should be having tested/looking into? Thanks in advance!
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