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 homeschool our daughter. We really feel is is the best option for our family, not just because of celiac disease, but it certainly makes that easier too! My suggestion would be to see if there is a homeschool group in your town, talk to other parents and decide if this is something you are interested in. I would be happy to answer any questions for you as well. My dd is 6 and in first grade. She is happy and outgoing (as most homeschool kids are that I know- socialization is not the problem it is made out to be!) and learning wonderfully.
Well, I just sent a Thank You e-mail to Chick fil-a. They aren't in our town yet, but I can hope they come to, and I will make sure we stop by when we are out. I figure it is important to make sure they remember how many customers depend on their gluten free menu!
Wow, I just saw all this on Yahoo last night. Thank you SO much for pushing this issue so much. Of course my 6 YO was devestated to learn she couldn't eat there anymore. I will have to make more fries and hashbrowns at home, but that isn't the real issue. That was one "normal" thing she still had! I get so mad knowing that for these past 2 years she has been gluten free and we have been SO careful, we have still been giving her gluten! We didn't go there all the time, but it was a nice "quick fix" when we needed one. So much for a "happy meal"!
My daughter had her bone age test done when she was almost 4 and it showed she was just over a year behind I believe. At the time we were taking her to an endocrinologist to check for growth hormone since no one thought it was possible to be celiac disease. She was actually diagnosed about 6 months later though. She has been gluten-free a year now and has gained about 12 lbs and grown 3-3/4 inches. I remember that the weight did come back before I saw anything in height. I think the body has to build back up a bit so the growth is a bit slower. She is now just over the 50th percentile for weight, but still just barely over the 10th for height. Everyone tells me it just takes time and she will catch up. 2 years seems reasonable, I hope she is caught up that soon!
I was VERY impressed with these biscuits! They actually rose! The texture is still a little different from wheat biscuits, but they were the best we have tried so far! I got the recipe from Shari Sanderson's Incredible Edible Gluten Free Food for Kids. We use a lot of things from there! I use a Kitchen-Aid to mix it all. The dough did come out very dry, so I added enough milk so that it would all stick together. As for other intollerances, I will let you make whatever changes you need to.
1 cup rice flour
2/3 cup potato starch flour
1/3 cup tapioca flour
1 tablespoon baking powder
1 teaspoonbaking soda
1/2 teaspoon xanthan gum
2 teaspoons sugar
1/4 teaspoon salt
1/3 cup margarine or butter
2/3 cup milk or substitute
Preheat oven to 450 degrees.
I just throw it all in the Kitchen Aid and do the milk last. Like I said, I have found I need to add a bit more, I couldn't tell you how much, just enough so it sticks together. Then I mold the biscuits by rolling them in balls and flattening them a little. I put oil on the cookie sheet and flip them over so both sides are coated. Bake for 10-12 minutes or until lightly browned.
I plan on continuing to see if I can make more adjustments to make the texture a bit more like wheat biscuits. I will try adding a bit more xanthan gum, or perhaps an egg.
We keep them in the freezer and heat them up as Ashlee wants them. They keep great that way and taste fresh every time.
Hi, I just noticed this on the Forbidden list, and was wondering if anyone could help me out? I googled it and I read that it was an individual plant, so I don't see why that would contain gluten. I am actually checking because I am wondering about trying to find a cheap replacement for my pet's foods. I don't let my daughter feed them, but I am wondering about cross contamination after they eat and then lick themselves or just plain slobber everywhere. While we are working on better hand washing for her, I also like to cut down on exposure wherever I can. I am wondering if I switched the pet food to one that only listed Brewer's yeast instead of actual wheat if it would make this even less of an issue. Any thoughts?
I am SO glad you asked this question! I have been so confused about this for the past year! My daughter was diagnosed in March of 04 and I printed up my lists then. Mine also lists Gum Base as a definate No, and so I haven't been able to figure out how gum could possibly be OK! I have heard that Wrigley's gum is gluten-free, but since it listed gum base, I was still scared to let my little girl have any. She will be so happy to chew gum again!
Just thought I would let you know you aren't the only one!
How frustrating! Yeah, I think you do have to get medical records and test results from the Dr. who ordered them. Personally, I get tired of all the privacy protection with medical records. Really, I don't care if anyone see's my test results! It just makes it a pain to get your own records! I think adjusting her diet on your own sounds smart. I think I would also be skeptical at this point! I can't remember how much trouble she is having with the GI symptoms, but Ashlee had to cut out dairy for 6 weeks or so while she healed from the damage gluten had done to her system. We added it back in after that and she did fine. Just something else to consider if she continues having probems. They say it is very common for Celiacs to be lactose intollerant at first. I have been checking out the Delphi boards, I saw a link here somewhere and it is very informative. There is a lot of information regarding testing and all that! I thought of you when I was reading a lot of it! Right now I think you are doing the best thing for her. I have heard of people noticing a difference as early as a few days gluten free, but it took Ashlee more like 2 weeks, and then it was still longer until all the symptoms were gone. It is hard to wait, but exciting to think that if this is really it she might get some relief at last!
Well, that is a relief, I was afraid she was hallucinating! I don't know, I would think it is probably Celiac and for some reason she is a hard case to diagnose. If you know it is autoimune, and the symptoms match, it really seems to point to it! Someone on this board was mentioning autoimune disorders running in the family somehow. We don't know of any in our family, so Ashlee really took us by surprise. She seemed pretty healthy, but now looking back, I can see signs that have been around for awhile. Our first clue was her growth slowing down, then last year the diarrhea kicked in and wouldn't go away. Everyone kept saying it was viral, but I always get whatever she gets, and I was fine. I used to do daycare, and no one else had it. I don't know, I just knew something was up. She was so sick by the time she was diagnosed that she is now terrified of gluten!
I hope the weekend goes easily and that you can finally get some answers on Monday!
That is funny! My kids saw Dr. Dahlquist, but we just really clicked with Dr. Mandi. I also know Kay Green, we talked about adoption stuff, and she mentioned that she went to church with Dr. Dahlquist too! Our pastor's wife had told me about Kay when we first started looking into adoption. Here I was getting so homesick! We moved to East Texas this past summer since my husband has a lot of family out here. He could use his B.S. in Social Work to start teaching through a special program out here while he gets his Teaching Certificate. So, God opened the doors and we followed!
I would maybe check into what exact labs they did, and if they sent them out, or what. If you look on the main site here there is something about why it matters about going to a reliable lab. Not that Tuality isn't reliable, but I don't know how well they do things for Celiac blood tests is all. We are currently waiting to get Ashlee re-checked because I am afraid she might be getting gluten still and I found out that she will need to get a blood draw locally, then they will send it to California to do the test. You should be able to find out exactly what test they did and where it was done.
That's good they are getting her in on Monday, is that the same Dr. who was going to see her in March? I know I have read people on here say that they tested negatively, but responded to the gluten-free diet and that was enough for them. If she wants to go gluten-free now, are you OK with that? I am glad we have a diagnosis for Ashlee, but mainly becuase she was 4-1/2 when she was diagnosed. I have read that sometimes kids go through a period in their teens when the symptoms don't appear, and this way I have the diagnosis if she forgets what it felt like and begins to wonder. Chelsea is old enough that if she were to go gluten free and it worked she would never want to ingest gluten again! I would still want to check things out so that you don't miss something else, but when the Dr.s don't seem to be helping, what do you do?
So was she thinking she had just eaten Biscuits and gravy when she really hadn't? That sounds scary! The seizures sound scary too!
I know people talk about being gluten intollerant vs. having Celiac Disease. I really don't understand the difference. I do know that Enterolab only will diagnose as being gluten intollerant, I really don't know why though. People say they are very helpful, and I think they are based somewhere down here in Texas. It is a stool test that they send you in the mail and you send it back. They go off of that to detect gluten intollerance, as well as other food intollerances. I looked into it a little while trying to figure out what is going on with my son. Maybe I am too keyed into poop these days, but some food seems to be bothering him! The testing was out of our price range though (1st year teacher!) so I am just trying to watch him. His symptoms are nothing compared to Chelsea though!
Thanks Bridget, I called and they told me they were gluten free. I am wondering though if we need to worry about cross contamination there. What if in the Pharmacy they fill a prescription of a medication that contains gluten, then filled her prescription? I don't know if that is too far fetched or not! I may be grasping at straws! I finally got everything worked out to get her blood test done (after 2 weeks!) Only to find out that since Promethius will be billing our insurance, I will need to have a referall first! So much for getting it done over the weekend!
AAGH! I feel your frustration! So did they just run the second blood test at the same time as the second biopsy? How confusing! The AHA test that was positive was just for an autoimmune disorder in general, is that right? I have also heard to make sure the lab is done at a recognized lab. Since Ashlee's came back positive before I even read that, I didn't think much of it, but with the results your daughter has gotten, maybe see where the labs were sent. Where was the first blood work done through? My kids' pediatrition in Oregon was Dr. Mandi at Hillsboro Pediatrics, they also have Dr. Dahlquest, Naason, Brown and Krupa. Is that where your daughter was seen? If so, did they do the blood work or send you to a Ped GI to have it done? All they did was stool tests through Tuality for Ashlee, then they referred her to a GI specialist at Emmanuel who ordered the blood tests. I don't know if it would make a difference who they were through, just trying! I really don't know anything about other autoimmune disorders, but I would maybe research into other ones as well, just to see. It sure does seem like she has a lot of Celiac symptoms though. You might also try Enterolab. I know a lot of people on this board have been diagnosed through them and really trust them. It would at least be something else to check.
You might also want to start a seperate thread asking about the new doctor in Austin. Someone may know about him, just not be reading this thread about Dr.s in Dallas. Have you contacted any support groups in Austin, they might have some first hand knowledge about him as well.
What brand of ketchup was it? Heinz 57 is gluten-free, so I just thought I would mention that.
Otherwise, it seems like your little girl could very likely have Celiacs. As for whether or not to deal with the testing, it just depends on a lot of different things. First of all, as far as the testing, I was worried about the biopsy, but Ashlee's GI told me they do this type of thing safely on newborn babies, and that helped me. You could also have a blood test done, which other than holding her down wouldn't be that bad! The advantages to having her tested could be other adults in her life taking it more seriously. Some people who have a medical diagnosis still have problems with family and friends believing them. You need to know when your daughter is at Grandmas she is still safe! It might also help later when she is in school if the school gives you any difficulty. If you don't think this would be a problem, the other thing to consider is that I have heard as kids hit puberty, symptoms can go away. (Of course, damage is still being done). If your daughter has a firm diagnosis it is harder to say "See, I'm fine". If you think you will ever want a medical diagnosis, now is the time to have it done. Otherwise you will have a child who you are fairly certain has Celiac Disease who then has to eat gluten for quite some time in order to test.
It really is a personal decision. If you see what is wrong and can fix it with diet, that might just be the way to go, it just really depends. You could always order a test through Enterolab as well, and then you could have the best of both worlds!
Best of luck to you, and I am glad you hear your daughter is feeling better!