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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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  1. Thanks. Bubba's mom- it could be fructose, soy, anything. at this point I have no clue. I guess I do have to be the detective but I'm not doing a very good job at it. Gemini- thanks, it's helpful to hear that the waxing and waning of symptoms over time is not uncommon. As to the dismissive doc, what I posted here is nothing! my husband is shocked at some of what he said to me. Basically he thinks I am a bored housewife and I'm feeding my kid some restricted health nut diet, which is far from the case on both counts, not that he would know since we discussed neither my employment status or my kid's diet. Idiot. Anyway, I'll keep plugging away trying to figure out what's going on.
  2. Thanks to everyone who replied to my previous query here. As I mentioned in my other post, my son had a negative anti tTG and normal total IgA. I'm not convinced one way or the other at this point. Gastro doc effectively dismissed us. (Some kids are tiny. I am feeding him food that is 'too healthy' which is why he has diarrhea) Anyway, the diarrhea continues and my son has less and less appetite. (I do not think we should have to be running to the porta potty at the park multiple times or having this happen multiple times a week!) My questions at this point are: 1. we had a point at age 2 where my son was alarmingly thin and had some tests run. Nothing turned up. He actually recovered some growth over time and between 3 and 4 was above the 10th percentile for height and weight. . He had little diarrhea and I began to accept that he may just be small. Now as you can see, here we are at 5....with a return of diarrhea as I mentioned above (for 6 months like this!!), plus a growth drop (height is still within normal range 16th % but weight is down to 5th - an actual weight loss since last summer - and BMI is down to below the 5th from 67th at age 3.5), plus increasing appetite loss. So, does this improvement between 2 and 4 mean anything? Does this 'better' period tend to point away from something like celiac? Can symptoms kind of come and go over time? 2. this explosive diarrhea. This is making me crazy. I have kept a detailed food diary and simply cannot connect it to any particular trigger. We tried eliminating milk but that doesn't seem to be it. I even tried feeding him the identical foods that he ate on a day where he had awful problems on another day and he had no issue. I am completely and utterly baffled. What if anything do you make of this? We still have another two appointments, one with nutrition and one with ped. and I plan to ask about trying an elimination diet. (Have been reluctant because honestly if I can get him to eat anything I feel like i have to go with it at this point.) your thoughts on my questions appreciated!
  3. Well clearly they didn't do all the available tests. I just don't know whether its worth pushing for others or how much stock I should place in the tTG result and where I should go next. I am not convinced that there's nothing going on...I mean, should I really have to be making all this effort to feed him high fat food if nothing else is going on? (And the effort to put weight on him is not working. Not to mention I certainly never thought this much about what my other kids ate and they are healthy and tall and not underweight. I honestly don't understand how the growth chart doesn't speak for itself...) but anyway, I do think would be very hard to get any kind of compliance from schools without something official. Ugh. Thanks for your replies.
  4. I posted in this forum about 3 years ago about my then 2 yr old son who was very underweight. He was never evaluated for celiac for a variety of reasons. His growth recovered enough to be above the 10th percentile, thus alleviating medical concerns (although a 10th percentile height and weight is way out of sync with other family members and siblings). We moved and did not worry about it again. Now he is 5 and was flagged because of no weight gain in a year. In fact he has actually lost weight and although now up to the 15th percentile for height he is in the 4th for weight and has a BMI for age in the 1st percentile. (Down from a BMI of 50th percentile a year ago). He also has recurrent diarrhea (urgently needs the bathroom up to 5 times a day) about 3 days a week, and complains of mild but recurrent intermittent stomach pain which does seem to impact his appetite. We have evaluated calorie intake and found it adequate and additionally I am pumping him with pediasure. Developmentally he is fine. He finally got referred for eval on this and they ran a tTG IgA which came back normal (result says <3) and a total IGA which was also normal. This is from Quest Diagnostics. His other labs are all normal and nothing came up in allergy testing either. The GI doc was condescending and unhelpful. He is sure my son's diet is just not high fat enough, although we never talked at all about what my son actually eats. My husband's grandmother had celiac we think. At least she thought so. She may have been self diagnosed. My questions: I know the tTG is fairly sensitive. I have read all the posts about false negatives and it looks like that is about 10% ish...given that how conclusively should I view this result? Is this a complete panel? (What's listed as 'celiac panel' only includes tTG and total IgA.) Also, we are not gluten free by any means but we probably do eat gluten-light, and this child in particular is gluten-light since he does not like bread or crackers or cereal. We do a lot of rice and meat veggie combos, though he does sometimes eat pasta (I add butter and fat to all his stuff and he drinks whole milk and pediasure, the GI doc is whacked). Is his light-gluten status relevant regarding testing? What is the conventional wisdom on this? I know someone will say, just do a gluten free trial and see what happens, but I have other children and am reluctant to do a trial without some hard evidence in advance. I did already try removing dairy with no effect. I am not convinced he has celiac but neither am I convinced he doesn't. Thoughts on all this appreciated. thank you in advance
  5. Amazing! I haven't checked this site in weeks or more and there's my post from way back when, back on the front page! I am so glad my request has helped other people. (And judging from the number of views of this post, LOTS of other people were interested in the same kind of info.) Awesome. I am still on my search for answers. We were referred to a pediatrician who pronounced him healthy on a cursory exam, recommending pediasure. In June I took photos of him with me to our regular doctor, to get his attention on how skinny he is. He was (as usual) more concerned with head circumference (large in comparison to his other growth lines). We've recently been to a neurologist who sent tests off for a variety of rare things. (Not all back, but so far everything is normal, including thyroid and bone surveys.) We'll see what happens, but he agreed that if it is all normal we should proceed to a pediatric GI. At last. I do not expect a GI referral out of my regular doctor, who has directly nixed the idea of celiac. We will move next summer (back to the US) and I can pursue further. Meanwhile we started gluten free last week and are hoping for improvement. I logged in to post questions on that. Meanwhile a couple of photos of my boy. I took them a while ago, but they make me sad to look at so... http://i255.photobucket.com/albums/hh145/SC00kie/skinny3.jpg http://i255.photobucket.com/albums/hh145/SC00kie/j5.jpg http://i255.photobucket.com/albums/hh145/S...e/thebelly2.jpg http://i255.photobucket.com/albums/hh145/SC00kie/b3.jpg (this isn't a skinny shot, but since those make me depressed I thought I would put a happy one on too.)
  6. Hi there- My child is also driving me crazy. I'm gonna post about this later. My son just turned 2 a few weeks ago. He's not diagnosed or currently gluten free, but it's something I'm pursuing. I just weaned him from nursing right around his birthday. He was driving me a bit bonkers with the constant nursing, honestly, and I was concerned that one of the reasons he wasn't gaining weight was that he was nursing too much and not eating enough. He was an easy going and happy kid, for the most part, until a few months ago. He's gotten increasingly more irritable and I was despairing that he would ever wean. I felt like he was unhappy, so I didn't want to force him to wean when he clearly needed the comfort.. But a weird thing happened. He had about 2 weeks in March where he was just super cheerful, not so needy, ate well... I saw the happy child he used to be. He weaned VERY easily during that time. Whatever is going on with him abated that couple of weeks, and he barely even seemed to care when I rocked him and sang to him instead of nursing. He's totally weaned now. I have no explanation for his improvement over those couple of weeks (believe me, I wish I knew what was going on). Unfortunately, his brief cheerful spell ended and he's been miserable again since. Now I kinda miss the nursing as an easy fix, to tell you the truth, and his weight gain/appetite have not improved. I guess my point is, if your child is unhappy or uncomfortable, it's going to be hard. Mine had that inexplicable week where he was better, and it was easy. Seems like you already feel the same way or you'd have forced the issue already. If you can figure out why your child is clingy and unhappy and alleviate that, the nursing might fall by the wayside on it's own. If you decide to wean him anyway - which I completely understand and would not condemn in any way, 'cause I can totally relate - I bet the really 'miserable' time wouldn't last as long as you think. Less than 5 days. World Health recommends breastfeeding for 2 years. Good luck.
  7. Thanks everyone! I'm really sorry I did not get on here and say thanks sooner. tavweavmo - your photos were helpful. My son does look like your daughter did. I spoke with our medical care folks and arranged to meet the pediatrician when he is here in February. (We're remotely located.) Meanwhile, I had my son seen again by our local clinic, and he's sustained his growth curve at just below 10th percentile in weight but has dropped in the last 3 months from the 60th in height to the 10th. He's had ZERO height growth in 3 months, which is freaking me out. Anyway, in advance of our pediatrician visit, they're running growth hormone levels, thyroid, parasite screen, LFTs, lead level, a urinalysis, and maybe more but that is all I can recall right now. I will probably have to get sent somewhere else for more screening (including celiac) if these all come back normal. The doctor this time seemed to (finally!) agree that we need to at least evaluate it. Thanks!
  8. Thanks! I looked at the drawing and the stomach is definitely there, the butt is more of a maybe. I don't think my son's bum looks as bad as the one in the drawing, though he does seem to have some sag. So who knows. The stomach can't be normal though- there's no fat there, it's just bloated and hard feeling. And enormous. Next step is to figure out where I should go to get him looked at. We have only the most basic of primary care here. I suppose I also need to consider something like worms (ick), though the growth slide began prior to any third world country travels. Wouldn't that be an easier answer, though... Thanks for your time, folks!
  9. I guess I'm just trying to figure out if his abdomen is *really* distended- which I think it is - or if it's just a toddler belly and I'm nuts. Or if his tiny butt that can't hold up 18 mo pants at 21 months is *too* skinny. What does "wasting' look like vs. just skinny? He's fallen from the 65th percentile at 9 months into below the 5th percentile now, and I think he eats plenty. I don't know what the problem is. Last time he was seen, the doctor said her inclination was that he's "normal but small". I don't know- he's hitting the milestones, etc. but I'm recently thinking he doesn't look that healthy. His ribs stick out and he looks like a bobble-head doll with his giant head on his teeny little body. I just was wondering what a child might look like who has an absorption problem but who is not on death's doorstep starving. He has what I would term loose stools and occasional but not constant watery diarrhea. He's never had a 'formed' stool ever. I think he eats as much as he should, but he just isn't gaining weight. I can see the kid's rib cage in his back, above the protruding belly, etc. and he doesn't have the chubby thighs or arms my other kids did. Sorry if this was a waste of everyone's time.
  10. I think my 21 month old is FTT. Celiac is a possibility based on family history. We're in a place where our medical care is sporadic, but he's been slowly dropping off the growth chart since 10 months or so. Maybe earlier... I think his stomach looks distended and he has a skinny butt - definitely moreso than his older siblings, who were chubby things. I just came back from a trip to India and the kids begging on the streets are fatter than my kid, who eats plenty. But, he doesn't look as bad as hospitalized ethiopian kids (the only photos I can find). Is there anyplace an actual picture of something in between? I don't know why I want to look at this so much, but I can't get to a doctor for a bit and I'm obsessing. Could be giardia or something based on where we live (PRC), but on the other hand, the growth slip started several months before we left the US so I'm not inclined to think so. Thanks