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
I was diagnosed in 2004 after positive bloodwork and biopsy. I had an elevated AGA IGG and AGA IGA and some Anti-Reticulin (sp?) test that I don't think they do anymore. I was negative for the EMA test (which I believe is supposed to be the equivalent of the TTG). I can't remember who did my bloodwork...I'm pretty sure it was LabCorp. The GI said, based on my bloodwork alone, he wasn't sure that I had Celiac since I wasn't positive for the main indicators of Celiac and we would just have to wait until the biopsy results came in. They were positive and I have been gluten-free since then. I have had follow-up serology tests done with Prometheus almost every year and have always had negative serology and never had a positive TTG. If you think your son could really have Celiac, you should pursue this. In my experience, many GI doctors don't know enough about Celiac and you really have to check all the possibilities. Do you have a copy of his bloodwork? If you don't, I would make sure to get it. How high were his IGG and IGA levels? My IgG was in the 100's somewhere with normal only going up to 10 and my IgA was a weak positive at 24.
I was happy that they didn't make me sit in my gown in the general waiting area, but then I quickly realized that there was a lot of traffic in the area I was sitting! I felt rather foolish and I'm sure I looked ridiculous. I was just glad it was so quick so I didn't have to walk up and down the hall! I had to bring my purse and tote bag with me, but I was lucky enough to have a locker for my clothes. I'm still so impressed that your kids handled their tests so well. That is super!
You guys aren't going to believe this....I was completely done within about 1 hour of starting...the stuff was speeding through me like a runaway train! There was no walking the halls for me. Just had to sit up on the table for 15 minutes is all. They didn't do any of those cool things like tilt the table or anything fun like that!! Just had to lay down and have the little cone thing pressed on me. I guess that means I don't have to worry about having adhesions blocking anything!!
Kaiti - One of the reasons they did the test is I still get shoulder and right rib cage pains and feel like there is a separation between the upper half of my intestines and the lower half. I had my year anniversary test done and all the serology was negative, so that meant I was doing well on the diet. He did the test to see what is causing this other stuff. He was thinking maybe adhesions. There is also another option...I had my gallbladder out about 10 months before I was diagnosed and then right before they found Celiac, I also had a stone in my bile duct. The thing is, I never had stones in my gallbladder - it just didn't work. So...another theory is that my body is creating stones/sludge something like that when I eat too much fat and that causes the symptoms. That makes sense to me, especially now that I'm feeling like I don't have any adhesions after the test. Even though I eat very low fat, I've been more adventuresome lately. I guess I just have to behave. I had discovered that I could eat ice cream without the dairy consequences and I had been eating that a bit too often and that caused some flare-ups. I'm glad everything turned out fine on your test.
Your boys are brave!!! That barium is disgusting with a capital "D"! My youngest had her tonsils out and she was so brave to drink a lot afterwards even though it hurt. I kept telling myself if she could do that, then I could drink 2 cups of barium.
celiac3270 & all -
Thanks for your posts! I definitely thought about all the things my online buddies have written while I was sitting there sipping on my sludge. It made me feel not so alone!
That was nice of them to try and disguise the taste with chocolate! I used to watch Fear Factor when it first came out for the thrilling, daredevil stunts, and then they started focusing so much on eating disgusting things that I had to stop. I thought I was going to toss my cookies every time it came on! I think they should do a follow-up on people who have been on that show to see how many have suffered irreversible psychological damage from eating crazy stuff!!
Glad to hear yours took 2 - 2 1/2 hours instead of celiac3270's 5 - 5 1/2 hours! Hopefully, I'll be quicker, too. I hope your test came out fine. Were they looking for anything in particular? I think I've just been surprised because when I was diagnosed I thought the diet was the "magic bullet" and that all I had to do was stay gluten-free and I could eat whatever I wanted as long as it was gluten-free. It's been a bit discouraging to realize I have a whole bunch of limitations and still have a queasy stomach and stuff like that even though I've been gluten-free for almost a year and my bloodwork is now all negative. I guess healing villi doesn't fix everything!
I'm not sure if you'll even see this message since it's been a few months, but I just wanted to say I'm very glad they found your problem and that I hope you have continued to do well since the procedure. I haven't spent as much time on this site as I used to and since I had read many of your earlier posts and troubles, I was very excited to see in your signature in another thread that you're finally feeling healthy! I went on a search through the old posts to find out what had happened. What a long road to travel to find the answers!!! I have been gluten-free for almost a year and am having a small bowel follow through tomorrow to see if the symptoms I still have are just your basic Celiac complications or if something else is going on. I guess I should be prepared to be there for a while, huh? Mine starts at 8, so maybe I'll be out by 1!! I'm not looking forward to drinking all the nasty barium...blech!!! Take care!
Thanks, Paula! That looks yummy! I've been having a really hard time getting motivated to cook....although, in reality, that is nothing new. Even before Celiac I had trouble with that. I think having such a PICKY family has contributed to that. They seem to complain all the time even when I make things they like! Thanks, again
I was wondering if I can store my gluten-free Flours in my cabinet or if they must be either refrigerated or kept in the freezer? I have been really bad about buying a whole bunch and then I have hardly used them. Most are unopened and still in the cabinet. I have some potato starch and rice flour that I opened in November and they're just in the cabinet, too. I just didn't know if they would go "bad" or not. I have some unopened Almond Meal that I threw in the freezer recently...it had a sell by date of sometime in Dec. Do you know how long this stuff is good for once it is past the sell by date? I guess I was all excited and thought I'd come home and start baking all this stuff, but since I'm the only Celiac, every time I made something, I was pigging out on the whole thing, and my waistline can't afford that! Thanks for any advice.
I was just wondering if you had any luck finding some sugar substitutes? I just replied to another post about Chocolate Cake that called for 2 cups of sugar and asked the same question. I don't do sugar-substitutes either and 2 cups just seemed like a huge amount of sugar! I've read some things in some of the Carol Fenster cookbooks about different substitution ideas, but I haven't actually tried them yet. I really haven't done much baking. I'm the only Celiac and if I bake something, I EAT THE WHOLE THING, so....I'm trying to behave. You may want to check out some of her books...right now I have "Wheat-Free Recipes and Menus" in front of me and in the back there are sections for "Baking with Alternative Sweeteners" "Baking with Dairy Substitutes" and "Baking with Egg Substitutes" I think my favorite idea for the sweeteners is using fruit puree (either baby food fruits or puree fruits in the blender) but it suggests that it is best if used as a substitute for 1/2 not all of the sugar. It suggests Prune, Apple, Apricot, Banana, and Pear and suggests using Prune for dark colored foods. They also suggest using Frozen Fruit Juice Concentrate (Apple, White Grape, Orange, Pineapple) and you should used pure concentrate. She has suggestions in there for the amount to use...a little tricky, but worth trying to cut down on the sugar. Good luck!
Hi - does anyone have a suggestion for cutting the amount of sugar in this recipe? I don't use sugar substitutes (like Splenda), although I know they are popular. I'm looking for a natural substitute. Thanks!!
Mel - silly me... I forgot to mention that I also have trouble with meds. I've been gluten-free for 7 months and I still can't take vitamins. So far, I have done fine with the antibiotic I've had to take recently for strep, but I'm still terrified to try either Advil or Tylenol or anything else!!! I was originally mis-diagnosed with Advil-induced gastritis, then gallbladder disease, so I am really paranoid!! I hope you get some relief soon so you can take your meds.
That is very interesting about a possible link between endo and Celiac. I had my first lap in 2001 and then a lap in July 2003 for destruction of endo and my uterus-only was removed in Sept 2003. My uterus was enlarged and adenomyosis was suspected, but not verified in pathology. Mel - I am very curious to hear if your worst abdominal pains went along with your cycle or were they all the time? I still have my ovaries and I really feel like Celiac is messing with me somehow still hormonally. It's very confusing and amazing how these gyn issues and Celiac issues seem to go together. I was not diagnosed with Celiac until April 2004. Sometimes I wish I would not have had the uterus removed because it makes me wonder if it would have corrected itself once going gluten-free, but what's done is done. I do also have a great deal of relief from the female pains, so I am thankful for that. I'm hoping the endo won't grow back, but I know it is a risk still having the ovaries in there. Karen - I'd love to see that info about the endo/Celiac connection if you can find it. Thanks