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
Hi, I am still pretty new to this, so when I took my daughter to the doctor the other evening thinking she had Strep, I was wondering how I make sure the prescription meds don't contain gluten. Will the pharacist know, or will I still have to talk to the manufacturer, and then do you call the doctor and ask for a new prescription if it does and start all over? Luckily she didn't have anything but a virus, but it did make me aware that I should know how to do all this before it comes up for real! Has anyone run into problems with the common children's antibiotics, like Ammoxicilin? What about switching to generic when available? Thanks so much!
The first thing we noticed with our daughter was her slow growth, but since she is much younger, she has more time to catch up. We had first researced Growth Hormone Deficiency and in doing that I found that it is possible to hold off puberty in order to let the growth catch up before her bones fuse and it is too late. It definately has it's drawbacks (it may be hard on her to see friends develop before her, and I'm sure there are medical considerations) but you may want to discuss it with your doctor and make the best decision for her. If you feel she is lacking so much height that it could affect her throughout life, it may be worth considering. Just a thought!
I had heard 6 weeks, and it took Ashlee about that long to get those "regular poopies" so that is what we went with. I also went gradually. I had heard that hard cheese and yogurt are easier to digest, so we started with just a little bit of those and over several weeks worked our way up. When I finally gave her plain milk I olny gave her a couple ounces at a time and only with food. Now she is pretty much back to normal! She doesn't want to live off milk like she did before, but I think she was pretty much doing that because milk was one of the few things in her old diet that didn't have gluten in it! Good luck!
Hey, Ashlee calling out "Regular Poopies" is still music to my ears! She did have some formed, then more diarrhea and back and forth like that. Then I noticed she was having more and more formed stools. I thought it was strange how it changed back and forth like that. Good luck! It is so encouraging to see results!
Mel, I noticed you are giving her Orange juice. I had to cut oranges and orange juice from Ashlee's diet, they seemed to agrevate her stomach. Until the villi were repaired, I figured the acid is probably pretty hard on her little tummy. If she really needs fruit juice, I would try white grape juice or something.
I just remembered, we also upped the pediasure Ashlee was drinking so that we knew she was getting what she needed until the appetite returned. I'm sure it helped her, and it was a big relief to us since she was still not eating much!
Hi Mel, I know how frustrating it is to have to limit the diet so drastically and not see the improvement. I too had heard stories of improvement in days, and when I didn't see it, I was very frustrated! It took about 2 weeks to see any real improment in my 4-1/2 yr old, but then it was amazing! The diarrhea slowed down, though it continued fairly regularly until about 6 weeks gluten-free. She did start getting a bigger appetite then she had had in her life though! She also started acting healthier, she wanted to play more, and felt better. I know it is hard, but keep it up and you will see results. Also keep an eye out for anything that could be causing cross contamination just to be safe!
Hi Jen, I agree that you are looking in the right direction here! I think you have gotten some great advice, I would like to add that you might have to educate your ped about celiacs. My daughter was having extremely slow growth, but everyone assured me it could't be celiac disease. Unfortunately, she had to get extremely sick (the diarrhea did come eventually!) and lethargic before we were able to get her to the RIGHT specialist who could diagnose her. I later sent some information to our Ped who is ordering Danna Korn's book for the ped office now! Just be prepared to have to put up a fight, and don't let the Ped reassure you without doing tests! If it is celiac disease, it would be much better to find out now then to have him get really sick. Hang in there, you are doing the right thing!
I would probably put everyone but the 2 year old back on gluten until you can get tested. I think it would be easier now then in a couple weeks once you are getting used to being gluten-free, and the tests won't be accurate if you don't have enough gluten in your diet. Especially with the siblings, I would want to know! I don't know much about what tests to ask for though, hopefully someone else can help out there! Is there anyone who is filling in for your Dr. you can use without causing a problem in your insurance? Just a thought! Good luck!
RaeAnn, thanks for all the recipes. I tried cornbread and white bread yesterday. Ashlee really liked the cornbread, but we didn't try the white bread, I don't know if it rose at all. The recipe said it would be like thick cake batter, but mine was more like play-dough! Oh well, pick up and move on, the cornbread was easy! Can I get your recipe for your bread too?
No, I am nowhere near Chicago! I live in Oregon and will be moving to Texas! I wonder if anyone else does it? I don't know if I could get my husband tested even if it were free, but it would be worth a try! I have thought that if I have a positive blood test, combined with Ashlee's case, I would just go gluten-free. I'm hoping once we get settled in Texas we might have better insurance and I can get tested cheaper.
Well, we tried pork chops with herb gravey last night. It was pretty good! My one year old loved it! (and he doesn't even have to be gluten-free!) I think he ate a whole pork chop! Tonight we are taking a break from the new stuff and having taco salad. Maybe I will try making my own tortilla chips though, thanks to RaeAnn! I told my husband I am turning into a better gluten-free cook then I ever was before! Once you lose that crutch of easy meals, you are forced to learn!
Paula, I didn't realize you had tested positive on your blood test. I am wondering if my husband or I have it, but we are still trying to pay for all Ashlee's testing and since we don't show signs it will have to wait a bit. I would think that your reaction is pretty clear though huh? We haven't gone gluten-free, but we are trying to find gluten-free dinner ideas since I don't like cooking 2 meals each night! We did stir-fry last night. It was fun, my husband likes cooking that type of thing, and we found some rice noodles that were really good. I would use them in place of angel hair pasta too. I am trying quite a few new recipes this week, so I will let you know what I think of them. I have the incredible edible gluten free cookbook (somewhere in there something about kids too)! I have liked what I have used out of there, but most contains dairy so it had been off-limits until now. The stir-fry was pretty easy, especially if you cut up the veggies before hand it would be quick. Ashlee loved that we were all eating the same thing! Sorry, not much help on a cake. I made the carrot cake out of that book, it seemed best really fresh, but I hear there are great cake mixes out there. There are also recipes in that book for one too, I just haven't used it. I did find that Pillsbury cream cheese frosting was gluten-free (and lactose free, they use soy) so that was good. Ashlee was happy to eat plain frosting when everyone else ate cupcakes! That was before I found the carrot cake that was dairy free! See, there are sometimes we can "cheat" and still use packaged food!
It is frustrating trying to figure out where that gluten could have come from huh? I called on the shampoo and everything, it all seems fine, but I am waiting to hear back from the lotion. Well, I still need to bake that bread, better get going!
RaeAnn, thanks for the advice. I checked on her toothpaste, but I do need to check on the shampoo and lotion. I read the ingrediants and didn't see anything, but that doesn't mean much does it! The good news is that she hasn't had any diarrhea since Friday. I know they say that cheese is easier on the lactose, but my mom is severely lactose intollerant, and she can't have any (unless she takes Lact-aid). I have started baking with milk, I made her some pancakes yesterday and she was fine, so I am going to attempt bread today!! What tortillas do you make? Ashlee won't eat the corn tortillas, that would be too easy! I really think everything she is eating is gluten-free, I worry that it is cross contamination. I am really careful, but between cooking for us, her little brother, and the daycare kids, I am wondering if I have goofed somewhere. The nurse kept assuring me that it sounds like it is just taking her body awhile to heal though. I don't know, if it happens less and less frequently like it is starting to, maybe we are on the right track. It doesn't have quite the stench they had before either, though when she has it, it is really watery still. The more gluten-free meals I can make that the whole family likes, the easier it will be, and letting her have dairy opens that window a bit, so maybe it will help. We are moving in 7 weeks, and I won't be doing daycare anymore, so I think that will be a a huge help!
When is your biopsy, Paula? That is interesting that reintroducing gluten is causing a reaction (but it sounds painful!). I haven't been able to be checked yet, so I find that really interesting. I know my mom doesn't have it, but other than that, I don't think anyone else in the family has gotten checked yet.
RaeAnn, are you sure your daughter's constipation isn't related to potty training? Sometimes it can happen. We haven't had any with Ashlee, but who knows, I think it can be tied in with celiac disease. Evelyn's symptoms sound a lot like Ashlee was like, but hers started slower. First we noticed slow growth for a while. When she turned 3 we thought it was strange that she didn't fit into a 3T yet, she had always hit right on before, but we just figured she was due for a growth spurt, only it never came! She grew a little, but not normally. Then in Feb she got the diarrhea. About 4-6 times a day and she started getting really lethargic and skinny and pale. She didn't really have the attitude that people talk about, but she has always been VERY shy. I have noticed her being more outgoing with kids now, so I think part of that anyway was tied to the Celiac. I really believe our kids will make up for lost growth! I think it might just go slowly over time. I figure if Ashlee got back up to the 50th% where she was as a baby it would mean growing like 6 inches in a year. It might be better for them if it is spread out more over time!
Paula, I think I am in the same boat being tied to the kitchen all day! Only I haven't started baking really since we completely cut dairy out of her diet. I didn't want to have to go through all that and have it taste funny with some other substitue in there. I think the diarrhea is finally slowing down, so I am starting to reintroduce dairy. Luckily she was happy eating the same porcupine meatballs day after day and deviled eggs, so it made it easy for awhile, but she is starting to want more variety! I think it helps to make a bunch and freeze some, but the bottom line is, I am really missing easy junk food! Oh well, I guess I had to learn to cook sometime!
Oh no, she just had diarrhea again! It is so frustrating, it is never more then once a day, and she will go several days in a row without any, then get it again. This time it was right after cheese though, I hope she does not have a permanent lactose intollerance. That one would really be hard, I keep telling her all the things she can have once she can have dairy again, so she would really miss it. After 6 weeks gluten-free shouldn't the diarrhea be gone? It frustrates me that so much varies person to person, I really like things black and white!
Hi, I am pretty new to all this, but I saw gum base listed on the forbidden ingrediants, but I have seen Wrigley's gum on safe lists, and it has gum base as an ingrediant (as I would assume all gum would). Not that gum is a huge issue, I just don't understand, this would be so much easier if there were clear lines to gluten-free or not!! Can anyone explain?
Thanks for the imput. I decided to put it off a few weeks to see what is going on with the diarrhea, it seems to stop, and then starts back again. I really didn't want him to say to wait a few weeks and come back again! I am thinking up some more questions for him too, so we will get our money's worth out of the visit! I figure after waiting so long for a doctor to take us seriously, I better take him seriously too! Oh, RaeAnn, my daughter is 4-1/2, how old is your's?