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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
We always take (in a cold bag): boiled eggs, carrots, sliced peppers, and sliced cucumbers (or mini-cucumbers). We'll usually have a bag of potato chips, Lara bars, and Justin's almond butter packets. Usually, we'll have fruit as well. We haven't found too much gluten-free in the airport beyond coffee or more potato chips. We do tend to bring a lot, but our flights are mostly across the country, and there are five of us (kids are 11, 8, and 3). Once, we had meat that we'd cooked the night before...my daughter still remembers that trip fondly.
I have gone with the kids alone...it's an experience. But, as long as they have food and stuff to do (coloring is good), they're fine. A carseat helps (mine tended to sleep at age 2-3, because of the carseat). Of course, if you're on JetBlue, there's always TV.
Both of those for my son. He doesn't technically have celiac because he's low IgA/low IgG (and had an incomplete biopsy at 5). By 7.5, he was often in a bad mood, irrationally so, and complained of stomach aches that doubled him over. He wasn't growing. "Perfect" at school.
As soon as he went gluten-free, he had no more pain. He never realized that his bowel movements were abnormal (huge, unformed) because that was what he'd always had. He doesn't even like the smell of gluten now. He's back on his curve. And, while he still has his moments, behavior-wise, things are much better. (And, when traveling over the summer, he had some gluten by mistake here-and-there, and we noticed his behavior was worse.) I think gluten takes the kid's regular behavior and exacerbates the negatives. My kid is always going to be someone who wants things to happen however he visualizes them in his mind. He may get angry or tear up with frustration if it's not the case. Off gluten, however, I usually can reason with him, or give him a hug. On gluten, he is inconsolable and irrational over (what we feel are) minimal things (like, whether he's sitting in the middle or at the window--and his preference would change overnight).
We are trying my daughter gluten-free; she has mild ADD. She's still fidgety, though less (and sucks her thumb much less), and still seems to be disorganized (but there is more focus). Also, her keratosis pilaris, present since she was a baby, is essentially gone. She anxiously awaits Feb. break to go back on gluten. I suspect she will feel a bit unwell (and will realize that this is better).
This is what we're going through, too. My 8yo stays home at least once a month (this is an earlier thread). I think we're going to try removing dairy, but I do have to speak to him about this. He has never resisted removing gluten. I think he would resist moving dairy. He was not lactose intolerant according to the test. (We know it could be casein-intolerance.) Anyway, it makes him feel too different (plus, no one would know what to feed him on playdates if not for yogurt, cheese sticks, etc.) I would like to try, though, as it's the most likely culprit.
This GI did not make us do an endoscopy. We're not ruling it out, but want to wait until my son is old enough for it to show up, if that is the case. Or, see if he gets to the point that he accepts being gluten-free. (We don't have very good compliance with him since he's 3.5--his symptoms don't seem severe when he begs bread off of another child when we're not home, so that's good.) We haven't seen any fissures. He still doesn't want to use the toilet (but he says he's still little and that he's not ready).
My son does eat corn. I don't tolerate it, but I haven't noticed that in him. It doesn't seem to digest, but he doesn't complain about his stomach when he eats a ton of corn on the cob or corn chips.
My older son used to have 3-5 bowel movements a day--loose--and an x-ray showed him to be very constipated. He didn't realize his stool was abnormal until he stopped eating gluten. He did use Miralax for about 6-8 weeks? My mom has noticed that his stomach is no longer distended, the same with my younger one. Even if this is "only" non-celiac gluten intolerance, I think this is the right decision for our family.
By the way, if you're doing celiac testing, your daughter needs to be eating gluten, and not just here-and-there. (I'm sure someone said that above, so sorry if I'm repeating! The tests will come out normal if gluten-free.)
Thank you, I just saw this and your other reply! I'm sorry that your 8yo has been going through so much! I hope that, with time away from the offending foods, things improve even more for your son.
We like our son's GI in that he acknowledges the existence of NCGI. On the other hand, we think our son actually has celiac (confirmed celiac and autoimmune issues are in the extended family), but the doc doesn't believe it because of (incomplete) biopsies in 2010 (and, at this point, we don't want to re-gluten him for new biopsies where he feels so much better without it, and is back to the 5th percentile in growth). Anyway. I think that seeing a naturopath would be a good idea, though he is relatively open to trying things out if they are going to help (he knows that I've done that for myself, and believes me). Perhaps I will talk to him about a dairy-free trial again after school today. He seemed willing to have a trial without it, when I floated the idea yesterday. What is more difficult is when he goes to other people's houses. Yogurt and cheese sticks of course simplify matters when he can't have crackers or whatever else. I suppose I can send him with snacks for the time period that we try this.
I agree with the processed sugars, too. Our 8yo still wets the bed a few days a week (wait: I think it's been a whole week, perhaps longer!) The commonalities seem to be: going to bed too late (so that we can't walk him to pee before we go to sleep), and eating something high in sugar in the evening. He's also a different person when he eats sugar, but that's a different story. I think because he's so small, and doesn't load up on regular food as much, he's more affected by sugar. (He also knows this, and even though we don't give him much, he does eat less.)
Thank you again for writing in--I'm sorry to hear about other people having issues, but it helps to hear from people who have been there and are going through it!
I will check with the teachers today. What was odd is that he enthusiastically (for him) did his HW the previous evening. Usually, this happens on a Monday...as if he just needs an extra day to recover from the weekend? (I'm not sure how that will play as he gets older.)
Thank you; I will try keeping a food journal for him. (We do it before he sees the nutritionist, but apparently don't do a good job since she thinks he eats nothing! In this case, getting portions wrong shouldn't be a problem, though--I can see that knowing what he's having should help us.)
I think that's a good rule of thumb. Previously, we have worried less about cross-contamination with him (he doesn't seem to have issues after having gluten-free pizza from regular restaurants, for instance--that's also why it's hard to pin this on dairy). Every product that the woman had with her was gluten-free; it was my understanding that her products were all gluten-free. But, that is definitely something to find out for next time.
Thank you--we don't buy much, if any, soy either. If he has any, it's just what's present in gluten-free products (cookies). I think Udi's bread is soy-free. He occasionally has edamame (but it's infrequent). For milk, he has almond milk. We use coconut oil or olive oil, and buy coconut or almond ice cream for the house (he'll have dairy when not at home). Yesterday, he had farmers' market gluten free cookies. They had butter, tapioca starch, potato starch, and white rice flour (along with sugar and possibly eggs). I know that potato starch isn't the best for me, but it seems like it should be something simpler for a child who hasn't had so many years of being hard on his body. I have given some thought to sugar being a culprit--but it's hard to eliminate all sugar.
My 8yo son is home at least once/month for stomachaches. Most recently, it was about 2.5 weeks ago (he is home again today). The last time, he may have had a low-grade fever. We have noticed no fever today. We went to the doctor last time, and I can bring him today (I suppose) or see if he could have bloodwork, but he doesn't really seem "sick"--he just felt he couldn't be at school. Homework is complete, and as far as I can tell, all is well at school. He has friends, no one is bothering him, etc.
He has been gluten-free for over a year (which helped with much worse stomachaches as well as bowel movements), and was on Miralax for about six weeks last fall. His official diagnosis is NCGI. As for cross-contamination, we know that he ate actual gluten, by mistake, a few times in June and July. We have been careful on our end, and he is very conscious of this himself (making sure to check ingredients). He knows that he feels better without gluten, and doesn't want to stray fro the diet.
We have never taken him dairy-free, as that's just one more restriction (and one that he would seriously fight). I know that I'm (likely) casein-intolerant, my husband in either that or lactose-intolerant, and our daughter has some dairy intolerance as well. Because our house is largely dairy-free, it's just occasional gluten-free pizza (which he hasn't had in a while), ice cream (which he also hasn't had in a while), yogurt (maybe he had some last week at some point?), or butter.
Does dairy seem like the place to go? If we go back to the GI (well, he is having a follow up there in a few weeks for a growth check-in), he'll recommend another x-ray (which we won't do), and more Miralax--it seems to be the answer for everything. (I can't believe this many kids are constipated, the expected course of action is Miralax, and it's "for no reason"--but that is a separate issue of frustration!)
We did go through something similar with my second son. He had fissures as an exclusively breastfed infant (which definitely seems odd, looking back--obviously, I was eating something that didn't agree with him and caused much straining). And, then, despite using "elimination communication" (which was successful with his brother), he was in so much pain while pooping that he could go only standing up (necessitating diapers after several months in underwear). This was when he was around 21-22 months. The doctors recommended prune juice, other fiber, etc.
We decided to try gluten-free since it helped his older brother (and celiac runs in the family). This was under the guidance of a GI (who will diagnose him, at most, with only non-celiac gluten intolerance). He has not had fissures. And has not been complaining about his stomach being in pain the same way he was around age 2.5. (I thought his blood work was interesting--low total IgA, low Vitamin D, and low iron, but the GI said that his low total IgA wasn't THAT low, every kid his age has low iron, and every kid in the NE has low Vitamin D. In contrast, my son did not have low iron or vitamin D as an infant.)
I would do blood work. It's not always accurate for babies and very young children. But, I agree for school it would be better to know something--whether it's celiac or non-celiac gluten intolerance. Neither of my children has needed a doctor's note at either of the schools--but, the schools are private, so that might make a difference. I am pretty sure the GI would sign off on NCGI, though.
St. Peters sorghum beer was quite good, I thought (and I normally like Guinness, which couldn't taste more different). But, the Beer Advocate apparently thinks it's very poor: http://beeradvocate.com/beer/profile/296/50750/?ba=popery
I recommend continuing with breastfeeding. This is going to help her gut more than anything. Plus, she'll be miserable with the weaning (as will you). Doing so abruptly is bad for her health (stress, less healthy gut, greater risk of illness, etc.) and yours (future health, your stress, and, more immediately, mastitis).
I would recommend doing what the PP said about taking a day off to see. It might not be this at all. There could be something else bothering her--maybe you drink coffee there and there is gluten contamination? Maybe just eating on the tables there, using their refrigerators for your food, using the water? Maybe you touch your face without being aware of it? Doubtful in food prep, but still something that could happen accidentally. Perhaps it is from gluten, but perhaps it's from taking frozen breastmilk when you're not there? (Could it be contaminated with gluten--frozen before?) Can you give her probiotics, too?
With our DS1, we thought everything bothered him--but never could pin it down. Dairy can cause reactions. (Again, are you drinking coffee there with cream or milk?) Anyway, DS1 would projectile vomit (breastmilk only) about once a week, and had eczema--that was sometimes much worse than other times. We never really thought about gluten as being the overall cause until he was older. The GI feels that breastfeeding him for as long as I did was the best thing for him. (Even my mom, who was a naysayer at the time--it was a long time!--said that he really "needed" it as his stomach was is pain, and because he wasn't getting the nutrients elsewhere.)
This sounds like it must be a very stressful time! As difficult as it is to see your daughter in pain, even with the pain and the fussing, she's still getting such a great thing from you in the breastmilk. Even if you keep your job and continue nursing, it's still better for her to be nursing, even with a day that is less comfortable than the other days. I am confident that you'll figure out what is bothering her--and, it still may be coincidence. Again, even if you remain on the job, I recommend to keep nursing. It sounds like she's doing great six days a week!
I think most corn is a problem for me--corn starch, corn chips, actual corn. I can have a few chips. But, if I try to have them another day, it's not good. So, it's cumulative. Anyway, I try to avoid it, for the most part, since I'm not good with limiting myself once I start eating it. Udi's whole grain bread is generally ok (corn syrup solids), but I'm trying not to have too much of that either (one piece of toast leads to four--I need another butter-delivery method!).