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
The tough part is finding a doctor anywhere near our area. We live in a small town and it's not easy. We drive 1.5 hrs. (1 way) to see a good pediatrician and the specialists are a good bit further (one is a 3 hr. drive one way). We would be more than willing to put him on gluten for a time, in order to do a biopsy if we could actually find a doctor within a reasonable distance that is worth anything. We took him to his ped numerous times for this rash...she was stumped. She referred him to a local dermatologist, who basically said he had no idea...to try this steroid cream on it (that his office didn't even call in like they were supposed to). He was just...dumb, to put it nicely and it was a total waste of time (and that wasn't the only issue we had with that office).
So yes, we would love to have an official diagnosis, but that's easier said than done. Our older son's GI recommended bloodwork, but I know how unreliable the bloodwork is, especially for young kids. We are not willing to put him through blood testing at this point when keeping him gluten and dairy free keeps the rash away. A biopsy we would be totally fine with. I think the derm we seen just turned us off of trying to find another, so we have kept him gluten free and he's been fine. He started gaining weight finally and we just left it alone...stuck with it and haven't worried about getting anything "official".
If you don't mind, would you please remove my pictures from what you quoted? Please know that I don't request that to be "snarky" or "rude" in any way. I just may want to remove them from online at some point and won't be able to take them out of someone else's post. Thanks!
My son is not "officially" diagnosed, as we've decided to hold off on testing until he's older. My son had silent reflux and cried constantly (and I would bet part of that was itching and not being able to scratch). He had weight loss/failure to gain issues for months. He finally made it back onto the chart at 9 months and stayed in the 3rd percentile until 15 months, where he made it all the way to the 7th percentile. He's still smallish, but he's growing consistently finally.
He had a rash almost from birth. Steroid cream made it go away, but it would come back worse. We figured out very early on (2 weeks) that he had problems with dairy...couldn't even do hypo-allergenic formula (Nutramigen, which is still milk based, though very broken down). The rash got a bit better when we switched to Neocate (dairy free) and then he started getting oatmeal and it was worse again. Once we made him 100% dairy and gluten free, the rash went away. The only time it comes back now is if he gets glutened or "dairied". Even then, it hasn't been nearly as bad as it was for months. It still itches him really bad though and he digs at it constantly (it's the worst on his legs). He does gets some random spots here and there, which I believe is because we've brought small amounts of gluten into the house again lately (bread, for brothers' sandwiches, and crackers for their snacks). So the house is going gluten free again and if that doesn't do the trick, we're going to change salt and try to start limiting iodine. Anyway, if you made it through all that (I suck at narrowing things down and wanted to make sure I gave all the necessary info), here are some pictures from when he was almost 5 months old and it was pretty much at it's worst...
You could also try a probiotic, which helps with all kinds of tummy issues. Culturelle for Kids is dairy and gluten free (and also has no wheat, dyes, flavorings, or preservatives). It comes in powder packets that you empty into a drink. For the baby, we just empty it into a bottle. For the big boys, just put in in a bit of watered down juice.
I can't be of too much help, but I will tell you my experience (the little bit of it anyway). My 7 year old son's doctor wanted to do the full testing, including the genetic part. They put in for the pre-approval, but insurance refused to pay for that part. So we are only able to get the regular testing done, which we are hoping is enough. He is going this Friday for that.
If his testing is positive (I'll be shocked if it isn't), we'll then test his 6 year old brother. We opted to go that route because he is...well, let's just say it'll take an army to get blood from that child. We're trying to avoid that if at all possible, lol. We already know the baby has Celiac because he has DH (dermatitis herpetiformis) that cleared up once he was gluten free (he had had the rash his entire life before that). Testing is really unreliable under the age of 2 (or is it 3?) so we're not bothering with it for him at this point. We haven't decided if we will test him eventually, but at this point, we are not.
I would just talk to your kiddo's doctor about it and see what testing your insurance will cover, depending on your diagnosis. My son's doctor does the bloodwork first and then if it's positive, they see a GI to do the biopsy. I don't know yet if we're going to do the biopsy, but that's what they like to do. Each doctor and insurance is going to be different though. Come up with a list of questions maybe and give them a call or go in for a visit. Sorry I can't be more help, but good luck to you!
I guess I should elaborate a bit more. I forgot I hadn't posted on this board yet. We're all going to go gluten free soon. My 7 year old is being tested and if it's positive (I'd be shocked if it isn't), we'll also test the 6 year old. Even if it's just the baby though, it'll be easier to just keep it out of the house because he's so sensitive to it.
If anyone touches him with unwashed hands (after eating) or he touches anything that's had gluten on it (like if the bigger boys forget to wash their hands and then touch the couch and then he does OR we have crumbs or something on our shirts, etc.). We just block him from the kitchen because we can't keep every single crumb up and he breaks out if he crawls through there. He's a mess!
When you get a celiac diagnosis, do you replace the highchair? We have an older high chair that I looove. I am sure it's had gluten on it many times over the years. There are some scratches on the tray. It's been washed and wiped down a lot since we've had it, but will that get rid of it all or do we need to replace it? Little one is really sensitive to gluten touching him (has DH), but the highchair doesn't seem to cause any problems. I'm a little torn, so figured I would see what others did.
Also, pots and pans...they need replaced, right? Is it possible to get all the gluten off/out of a non-stick pan or do we just suck it up and buy new ones? We have several pretty new pans that I really don't want to give away, but ugh. All plastic cooking utensils and bowls need to go too? Glass is okay though, right? The kids plastic plates will need replaced too, I am assuming. Sooo not looking forward to this...I am the cheapest person alive!
I don't want to jinx it BUT this is day 10 gluten free (day 9 steroid free) and his rash has not come back. Normally, it starts to come back at day 4 (steroid free) and by day 7 it is everywhere and awful. He started to get a few bumps at day 4. They went in the usual pattern (come and go in random spots) for a couple days and now his skin is clear again. This is the longest his skin has EVER been clear. He is still a bit itchy at times, but looking great for now!
Oh and after only a few days gluten free, he started pooping normal too. He was having a really hard time going and only every few days. TMI, but when he went, it was basically a hard ball. He goes at least once a day now and has no trouble doing so.
So far, the gluten free trial is going very well for him!
I got the response from his doctor and all that went out the window! I always expect her to think I'm totally crazy and I am always surprised (pleasantly) when she doesn't. It took close to 7 years, but we finally found an awesome pediatrician...even if we have to drive 1.5 hrs. to get to her.
Okay, so DP and I talked about it and decided to stick with the plan to just test the 7 year old right now. We'll keep the baby gluten free, keep a close eye on the rash (as if we have a choice) and see what brother's testing shows.
Thanks again for all the help! I will definitely let you know how everything goes.
A quick question! I got an e-mail back from his doctor. She agrees that we should definitely test my older son (he's 7). The testing she mentioned, she said has to be pre-approved by insurance (which won't be a problem). She said the testing kit has to be sent to them and the blood is drawn in their office. She said it is "a multi step test that is done that looks not only at markers but also at his genetic risk of having Celiac that is the gold standard at this point for blood testing". She said if that testing is positive, he would then go to the GI for a scope and biopsy (which she said is the "true gold standard").
She said she definitely thinks we should test the baby at some point too but she is okay with waiting if I keep him gluten free and feel comfortable that he's doing better. She said she thinks we could test him now and we would get the most out of it if he is challenged with gluten before the blood draw, but that was up to me and to just let her know where I was at with it.
Do I start gluten again and test the baby too...knowing the steroid may interfere with the results? If it's the test that shows genetic risk and what-not, is that better? Should I just keep him gluten free and wait? Help!
I looked this morning on their website and from what I seen, he's on one of the lower ones. He's on Neocate Infant (which is the only one appropriate for him). The Neocate Nutra has the same amount of iodine (well, very close) but it's meant for spoon feeding. I seen that the Junior has a bit more in it. Hopefully just going gluten free will make an improvement in him. And yes, Neocate IS gluten free so no worries there!
A small update, his rash is starting to come back. It's going in it's same pattern, as expected. It starts with a few spots here and there, they go away, a few new ones come. If it goes as usual, he'll be covered again in a few days. We'll just keep him moisturized and wait it out. Hopefully without gluten in his diet, it will go away quicker and stay away. We shall see.
Well who the heck knows then! We can't test at this point without continuing to feed him gluten for the next month and even then it's iffy as to whether or not the test would be accurate. So I think we are doing the best we can possibly do for him. We'll just see how the gluten free trial goes, see what his doctor thinks, and go from there.
I will definitely ask her about giving him about Benadryl doseage if we need it. It always comes raging back, so I expect this time to be no different.
I did check our laundry detergent and it is gluten free (Ecos F&C). I still need to check on the dish detergent (hypoallergenic, dye free Dawn for bottles & Cascade for Dishwasher stuff). We use unscented Dove (the bar) to wash him with and his lotion is off brand (Wal-Mart) unscented Eucerin. I still need to check on most of that, though we haven't actually washed or lotioned him in since going off gluten. We've just been letting him soak and play in coolish water and then getting him out.
He's been on Neocate formula (and Nutramigen before that). We have always been super careful about keeping him completely dairy free so that shouldn't be an issue thankfully. His formula does have iodine in it, but I don't know if there are any that don't?? Hopefully we won't have to go that far with it though...hopefully. I have been reading a lot on here and I think the iodine and salicylates and what not are freaking me out, lol. I mean that in a completely overwhelmed kind of way.
Perhaps this is why he's always had trouble gaining weight as well. It would answer a lot of questions. I mean overall, he is doing great...crawling, pulling up, doing everything he should and then some. He has, however, always had trouble with weight gain. He started out really well and then from about 2 weeks on, started thinning out. He is 14 lbs. now at 7.5 months. His height and head have stayed on the charts, so no issues there at least, but he is definitely a long, super skinny boy!
Hopefully we will see an improvement in him soon and we'll just go from there! Thank you again for all your help!