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
Yes, yes, yes it is very normal to get like that. Before I found out I had a gluten-intolerance (not officially diagnosed Celiac...) I just thought that I would get extremely lethargic and have brain fog only after heavy meals. But, then it was happening almost everyday and now I know it's because even though I was eating very light meals, I was making wraps with wheat tortillas!! Everyday!! Geez...makes so much sense now. I would be sitting on my computer at work and literally feel like my head was a million pounds, my eyes wouldn't stay open and I felt like if I put my head down on my desk I would just pass out immediately. I would just go get some caffeine, but it never fully helped and the fogginess lasted all day.
I got glutened twice in the past 2 weeks and both times I was ready to pass out 30 minutes after eating. My boyfriend knows about my gluten problem and now he can tell exactly when I've been glutened because I become lethargic, unmotivated, snippy and don't feel well. Sometimes it feels like I'm drunk or something. It's so weird. And now I know that when I'm completely off of gluten, I am free to be the real me! I'm so much more energetic and want to go out and do things and I'm always peppy.
So, that's a very long-winded way of saying you are not alone my dear!! :-)
Hello all! Ok, so I got what my Dr. called the "Celiac Panel" run a couple weeks ago on my blood. I had been trying to eat more gluten for a week before the test (but don't think I ate enough) and the week before that was almost completely gluten-free and before that I was eating whatever I wanted.
Ok, so here are my results, please provide any insight. I already know they didn't do all the tests they should have...
Tissue Transglutaminase Antibody, IGA My result: <3
Negative scale: <5
Immunoglobulin A My result: 119
Reference Range: 81 - 463 mg/dl
Now, I know that these tests really aren't quite enough...but please let me know what you think. I remember seeing once that someone asked in here if a person could have the antibodies in their system at all if they weren't Celiac or gluten-intolerant? But, I don't remember what the answer was...
I did the same thing when I had my blood tests just last week. I was really nervous that my GP was going to be an a-hole about it b/c he can sometimes be like that...depending on his mood. haha. Anyway, I just decided that it was important enough to me and so I kind of bent the truth and said my grandma was recently diagnosed. It was almost true, except that she has several symptoms of Celiac, but no official diagnosis. She has rheumatoid arthritis, lactose intolerance, psoriasis, and I don't know about the other symptoms.
Anyway, it was like flipping a switch. He was like, well Ok, let's get those antibodies checked. he ordered the Celiac Panel. It was alot easier than I expected. (BTW, still don't have results back)
Just remind yourself that you are the patient in this case. You are asking for tests that you will have to pay for. The doctor doesn't have to do anything other than order them. So, you deserve whatever test you ask for!
Good luck and congrats in advance on being a Dr. someday!
I too was told by a dr. that "it could be Multiple Sclerosis." That was really great. Didn't freak me out at all! geeez.
I too have thought more recently that it could be MS, but then I started learning more about Celiac and thought, OMG, that sounds more like what I have. And really, I hope so, cause MS? Um, yeah, MUCH scarier!
Thank you all so much for your stories. They have really made me feel better...even if you aren't happy, I appreciate your honesty. That is real and this is real and I'm just trying to prepare myself.
I'm kind of wondering how I am going to feel if my tests come back negative. I have read on this forum that false negatives are common. I really tried to eat more gluten products for the week 1/2 before the test. Before that, I had tried going gluten free for a little over a week, but that was it. I am pretty positive that I still had enough gluten in me to bring back a real result. I will be kind of pissed if they are negative, because then I just have to keep wondering what the deal is with my body and mind.
Either way, I'm eating gluten-free, other than a couple slip ups. Right now, I'm not feeling much better because I've only been gluten-light for the past 4 days and before that was glutening up for the blood tests. So, my body is really confused and it's showing me its' confusion.
Thanks again for the support and I will definitely come back with my results when I finally get them!
Hi there! I had the Celiac Panel blood tests run 2 days ago, but have not gotten results back. I know it may take a while...
Anyway, I'm feeling really nervous about it. Half of me hopes they are positive so I can have a definitive diagnosis and finally be able to make sense of all the symptoms over the years. But, half of me worries that I may feel an unexpected depression at the idea of having a life-long disease and being gluten-free forever (already on anti-depressants, so I'm used to it. lol) Anyway, I just want to throw the question out to you guys who have been diagnosed.
How did you feel when you actually got the definitive diagnosis?
I can relate - and this is just an added symptom to make me believe I have Celiac. I have not yet been diagnosed, but having blood tests Wedesday.
About 3 years ago, I went to the dentist because I was having alot of tooth pain and I thought I may have cavities. I don't eat alot of sugar either, and never have. Anyway, at this point, I was about 20 yrs old. The dentist told me that I had worn through about 2-3 layers of enamel. I have to add that I have had a major problem with grinding my teeth since I was a child.
When my permanent teeth grew in when I was a kid, we noticed that I have a white patch on both of my front-top teeth. I was told back then that it must have been from a childhood illness...My mother and I do not remember me having any kind of childhood illness when my teeth were growing in. But, we just figured he was right and moved on.
I seriously cannot wait to get my blood tests back. And if an added bonus of going gluten-free is that I can stop losing enamel so quickly and maybe stop grinding--well it is soooo worth it. Any comments or thoughts?
Wow Jessica! I haver read a couple of your other posts and know you were waiting. Congrats on getting clear results...And I know how you feel. I haven't even had my blood tests yet, but part of me wants them to be positive so that I can put a name to all of the symptoms and suffering.
Good luck with going completely gluten-free! Just think about how much better you are going to feel!
I'll definitely post my results one I get them. How long did it take for yours to come back?
Howdy! I looked this topic up specifically because I have lost weight on the diet. I lost about 3 lbs in a week of being gluten-free. I do want/need to lose weight, so I feel like it is a benefit and if even makes me more convinced that I have an issue with gluten. I have ALWAYS had a really weird appetite. Ever since I was a kid, I have had some days where I just wasn't hungry at all and others where I was ravenous and couldn't get enough. It was like I was a bottomless pit. I think that for me, the gluten not digesting and all has made my body think it is more hungry, so I would eat more. In about 2-3 days of starting the diet, my appetitie almost disappeared...no joke. Like, I could still feel hungry, but not at all ravenous like before. It was more like "oh, i guess i'd better eat" instead of "omg, if i don't eat now I am going to strangle someone."
Anyway, I have my blood tests this Wednesday, so I hope I can figure something definitive out. I have been eating gluteny stuff for the past 2 days to get ready for the test...I hate it. I was feeling so good and watching the weight fall off with no gluten --I am definitely going back to gluten-free after the blood tests. No doubt.
I too have had the sensation of bugs all over me, but didn't put it together until I read these posts. I've had alot of neuropathy symptoms...I even went to the dr about 3 years ago complaining of the tingling in my arm and leg down to my foot. It sometimes just felt like tingling and sometimes felt like pins and needles. At the dr. they did blood work, but did not test for celiac or anything. My cholesterol and whatever else they tested was fine. The dr. even mentioned Multiple Sclerosis...let me tell ya...that was NOT fun at 21 years old to be thinking I could have Multiple Sclerosis! It was the health center drs at my college, so I think they really weren't too well trained in how to NOT scare students. Since then, the tingling has waxed and waned. More recently, I've had balance issues where I felt like I was about to fall over and had an afternoon where for about an entire hour I was shaking really bad. All of this stuff, put together with the gastro symptoms, depression, etc. have me more convinced than anything. I am going to get the blood work done next week and I will tell the Dr. about my neuropathy symptoms too.
Good luck with all of your symptoms!
We will all just have to stick together! Remember to take it one day at a time.
I DEFINITELY have the same issue. My hair seems to fall out ALOT, but I have alot of hair so it still doesn't look thin. However, my hair has definitely changed over the years. My hair stylist said she noticed a change in my hair over the past 4 years. She says it seems like it's thinner and the texture is not as smooth. I know I've always had tons of hair all over the place, but I think it's definitely more than it should be.
I have psoriasis too, so I already have the scalp issues. I am pretty sure that once I'm gluten free for a long time, alot of these weird things will go fade away.
Oh and forgot to add the strange things I've noticed over the past week, almost completely gluten-free.
~ I have had very twitchy eyebrows - from what I've heard it's lack of potassium (so i'm eating bananas)
~ This very obvious spasm on my left side - like maybe my large intestine? It lasts for about 5-10 seconds and I've only noticed it about 3 times in a week.
~ Dizziness - BUT, I will add that I was having dizziness before I started on gluten-free. i know that the most recent dizziness is probably from lack of food/nutrients since I haven't been eating much.
~ More energy
~ little to no brain fogginess
~ better mood/more chilled out
~ less tingling in my arms, fingers