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
Since my son's fecal tests for malabsorption came back negative, they are running a fecal elastase test on him...I dropped off the sample today. They are trying to determine if he has pancreatic insufficiency. I have read that the number 1 cause for this in children is CF, which we've already ruled out via sweat test, and another genetic syndrome which I'm 99% sure he doesn't have, and the 3rd most common cause is "ideopathic pancreatitis". I've also read that there are some strong links between Celiac and pancreatitis and so I'm wondering if this is something that anyone else has had experience dealing with, and if it will explain why we've had improvement going gluten free but not stopped the chronic diarrhea overall.
Even if pecans are out, there are other nuts that you can do. My son (23 months) is a big fan of nut butters, so peanut butter on celery (with the strings removed) is always popular around here. As are lunchmeat and sausages of any sort. He's a huge fan of gluten-free waffles, coconut milk, baba ganoush, raw or cooked carrots, broccoli, and cauliflower, cooked green beans are a great snack...and ripe bananas are often compatible with fructose intolerance - something about the glucose fructose balance being ok. Small amounts of blueberries are also ok, just don't let them overdo. Look at paleo blogs for ideas - although they like eggs, there are plenty of eggless ideas for snacks that don't use gluten or dairy.
Well, more news today...I'm not sure how I feel about it honestly. My son's fecal tests for malabsorption came back negative. Now, this was one of his better stools, so I'm sure a different stool might have yielded different results. But regardless, it does make me feel encouraged that healing is taking place, even if it is slower than I would have preferred.
The one test that the GI now wants to do, which makes me wonder if our new pediatrician has been in consultation with him, is a fecal elastase test, for pancreatic insufficiency. I've been reading, and there does seem to be a connection between pancreatitis and celiac disease, and it *could* explain our symptoms. I'm still researching, so I'm unsure exactly what this would mean for him if it's true - it may put him at higher risk for diabetes and pancreatic cancer, and he may have to be supplemented for life with pancreatic enzymes, or he may heal...I'm not clear yet. So off to do more research and hope that maybe this next test will finally yield some answers.
Thank you so much. I guess I should add that my DS has no official diagnosis at present, as his intestines appeared "normal" in the endoscopy and only showed elevated lymphocytes, and his antibody tests have come back normal. I do think that the time frame for his damage to occur wasn't long enough for them to see any sort of villous atrophy like they were looking for in part because he only really stopped getting breastmilk altogether about 3 months ago, when my supply switched exclusively to colostrum...right before we started the testing.
We have the same growth curve issues as you seem to, though on a smaller scale. At 6 months, DS was in the 90th percentile for height and 80th percentile for weight. At 18 months, he was in the 50th percentile for height and 8th percentile for weight. Now, at almost 2, he is in the 25th percentile for height and the 2nd percentile for weight. I'm sure that his malaborption issues started between 6-9 months, but he also crawled and walked in that time frame, so it's harder to "prove". I desperately want to get him absorbing again so that he can do some catch up growth. The one thing that sustains me is knowing that his head growth has stayed on curve - even with fat malabsorption, his body is directing what fat he does get to where he needs it most. But it is very frustrating. I hope you get some answers soon.
I would just like to add that I think the protective effects of breastmilk are probably capable of supressing some of the symptoms. My DS was virtually exclusively breastfed until his molars finally came in around 15 months, though he probably had wheat introduced close to 9 months in the form of a cracker or cheerio here or there. Gluten products in small amounts were some of the only foods I could get him to eat early on. Once his molars came in, he started eating a lot more food, and at the same time, I started producing a lot less milk as I had become pregnant, so he was eating a diet containing plenty of wheat foods and other food from 16-18 months. By 18 months, I had very little milk left and that is when his chronic diarrhea first appeared.
His sibling will be born in the next few weeks and as he has never weaned, we'll go back to tandem nursing. I'm hoping that we'll see a renewal in digestive benefits as he starts getting decent amounts of breastmilk, and that this will outweigh the secondary lactose intolerance that he's developed.
Right now, we're still working on diet overall. Half his problem, I'm sure, is that he's a toddler. He'll eat a lot of veggies raw but if you offer them cooked, he won't touch them - I think it's a texture thing and also a "ew, my food is all touching" thing because he doesn't like mixed up foods all that much. I also know that children have a higher need for carbs, so I try not to cut too much out. Honestly, all I want is to get his results back regarding malabsorption, maybe get him tested for SIBO, and then work with the dietician about what I should feed him while his gut heals from that, if it turns out positive.
I think he got glutened this weekend, as his diapers have been copious and gritty the last couple days and we were in a toddler group where there was gluten and he may have gotten ahold of something, despite my trying to be vigilant.
On a plus note, we had an appointment with his new pediatrician today, and she seems like she really wants to be our advocate. She really and truly listened to his history, our experiences with other doctors and tests so far, and was just great with him. She wants to be able to fully review all of his information (some of it was not yet in his chart, like the dietician's report), speak with his other doctors, develop a full picture of what is going on, and have us follow up in a couple of weeks. She mentioned repeating his blood work and testing for other malabsorption issues, and so even while we're not officially switching pediatric GI's yet, I feel so much better knowing that she is going to be working with us, rather than just throwing up her hands and brushing us off to the GI. I will probably eventually get to the new GI, but feeling like I finally have a medical professional in my corner has left me feeling a lot more relaxed.
I agree that it would be good to know her genes. DS has DQ 2.5, and so I'm more concerned about it in his future because of the correlation. However, I'm more concerned about getting our soon to be born baby tested because I just learned that I'm DQ8 positive, which means this kiddo may well end up DQ8/DQ2.5 heterozygous, which seriously increases the risk for both Celiac and Type 1 even higher. It's very worrisome. I guess all you can do is know that your daughter is doing her best, and at this age, is old enough to understand the lifelong consequences if she doesn't stick with the diet.
Well, I'll be damned, my probiotic, Nature's Way, does contain FOS. He only gets 1/2 tsp per day, I hadn't eliminated it because we weren't full into the introductory GAPS diet yet. I was just reading about FOS the other day, but I didn't think to check it. We only have 2 doses left anyways. And my new one contains inulin, which is only marginally better, I see. I guess the bacteria have to eat something. I think that children's probiotics generally have a different mix than adults - this one has five different strains of Lactobacillus and five of Bifidobacterium strains. I haven't seen any that contain other types of bacteria in the mix sold locally at my health food and supplement stores. I will keep looking though, thanks for the advice!
We had to wait for a while for our referral to go through. My ped's office told me the process should take a week, so if I didn't hear anything, call. So I did and somehow my referral had been "lost". After yet another week of waiting, I had to call again to find my referral had been "lost" for a 2nd time. I guess I should have taken it as a sign not to go to this GI's office. But they called me the next day with an appointment finally. I hope your offices are more organized than mine.
Naturally lactose free cheese is great. My son would eat a ton of aged gouda if I would just let him. We've been completely dairy free for the last 6 weeks, but I'm thinking about trying out a few bites of lactose free cheese on him just to see if it has any effect, since he misses cheese so much.
I can't disagree with that! Some people have acted like I was a horrible person for testing him because "it's just wrong" to scope a 21-month old. Some people think I'm stupid for wanting some kind of official diagnosis for him because "their child had allergies and the school always worked with them". But yes, we are all just trying to advocate for our children in the best way we know how and take their needs and limitations into account when deciding on the best course of treatment for them.
Well, we've been eating mostly Paleo for several weeks now, transitioning more and more, but I've transitioned my son more slowly because lets face it, when you have a toddler who is *always* hungry the way he is, snacks on the go are important, and it's hard to find things that travel well or quick foods - so I'm guilty of the morning gluten free waffle or occasional peanut butter sandwich on gluten-free bread - we've been eating less and less of it lately. He is a little carnivore and will happily scarf down almost any meat we've given him - most fish, shellfish, beef, pork, lamb, and chicken are all hits. He also loves fruit, but that's something I think I would have to cut out entirely for a bit, and that's one of the toughest ones to imagine doing, since he will devour most fruits and they are good "on the go" snacks. Same with nuts - outlawed by most healing diets, at least in the beginning, but something that he loves and always wants to eat. Vegetables seem to be a hit and miss with him - one day he loves broccoli, and the next day he won't touch it, he will eat carrots raw but dislikes them cooked, he will eat some vegetables like sweet potatoes crispy, but not mashed or steamed - I think a lot of it is textural aversion to "mushy" foods, not that I massively overcook them, but he is just very particular about it and unpredictable.
Tonight I made a ham shank soup and he ate all the meat out, but barely touched the vegetables - I think I got one bite of zucchini in him - though the two raw carrots he ate earlier in the evening were probably partially responsible - however, most of these diets want veggies all fully cooked. It's slow going to transition him and I'm sure it would be easier if I was less pregnant and trying to juggle that with all of his needs. Some days I feel bad for this baby, because I don't feel like I think about him/her at all, I'm so busy researching ways to heal my son.
I guess I just have a hard time picturing it because I had such a horrible experience drinking the barium myself when I had to do that test, and I'm pretty sure it was flavored, but I spent the whole time wanting to vomit it up - I couldn't even finish the amount they wanted me to. My son is a classic "spirited" child, which means "stubborn" in many ways, and if he doesn't want to eat something, he will not eat it, especially repeatedly, and he fights like hell against getting a simple blood draw, so an NG tube would probably be extremely traumatic for him. If it were absolutely necessary, I would consider it, but probably only as a last resort given his personality.