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 have not been diagnosed with celiac disease. I will be tested in December. I am fairly certain I have some form of gluten intolerance as I experienced a huge improvement in GI symptoms while removing gluten from my diet for two weeks.
Since late childhood/adolescence I have suffered from depression, generalized anxiety disorder, social anxiety disorder, panic attacks, severe anorexia with OCD (1.5 years in recovery), and an annoying sensation of not being real, feeling detached from my self/life. I have been hospitalized several times because of the anorexia.
It is impossible to talk to my family about my physical symptoms because they automatically say it's in my head. I find this rather hurtful. I have never been drama queen when it comes to pain/suffering. It's as though they think the two are mutually exclusive. I cannot be physically ill because I have suffered from mental illness. I also find it rather silly as my head is a part of my body. Seems logical to me to think that problems in one's head could be caused by problems elsewhere in the body.
I posted a couple weeks ago. I went gluten free for 10.5 days and experienced a huge improvement in my G.I. symptoms. My doctor suggested I go back to eating gluten for 2 weeks to do the blood panel. It has now been exactly 2 weeks. Today I bought the biocard home celiac test. It cost only $50 opposed to the $100 and some for the blood panel. I understand that it is not as complete as it only covers tTG-IgA and if it is negative, I may still consider going for the blood panel. Since I was only gluten free for 10.5 days and have been eating gluten again for 14 days, do you guys think I can do the test now? I know there is no definitive answer to this question, just looking for some opinions.
If my blood test comes back negative, I guess I will just go back to gluten free anyways, as I know at least my digestive system feels a hell of a lot better without it, and see, after several months, whether my other symptoms are improving as well.
Trying to stay positive but it's hard. My family is telling me to go see my psychologist, they also think it's in my head.
My doctor said she is testing me, because if I have non celiac gluten intolerance opposed to celiac disease, I will be able to eat some gluten. Basically I won't need to be as careful, because gluten isn't actually causing me any health problems, it's just causing me GI symptoms. Is this true?
Secondly, she said there is nothing to support gluten withdrawal in western medicine. But, I have read scholarly article on how gluten breaks down into several opioids. What are other peoples opinions on this?
I was so nervous yesterday, I didn't ask which thyroid test she did in march, and what the level was. I found blood work from March 2012 and the normal sTSH range is indicated as 0.35-5.0. From researching online, I have found that the generally the new upper range accepted is 2.5, max 3, with optimal range being between 1 and 2. At the time of this blood work I was in severe starvation and very underweight. So this blood work is not very indicative of my present state. However, my sTSH level was 3.05. This seems a bit odd to me, because, from everything I've read, anorectics generally present with LOW TSH. Hmm.
My doctor said the test should be around $120, so maybe it doesn't include every test. When I go for the test, I think I shall push to have my sTSH levels retaken, and for them to test for thyroid antibodies, as well as my B12, vitamin D, and Mg levels. And then I will request a copy of my blood work. It would be so much easier if you could just go to the lab and say, please test me for this, this, and this. Cut out the middle man! If I reach a dead end, I may have to get a second opinion. Luckily, I know someone who was diagnosed with celiac disease over 10 years ago, and her doctor is a bit of an expert. I was also wondering, have people encountered less resistance with younger doctors vs older doctors?
She checked my thyroid and iron stores in March. She said my thyroid was normal and my iron stores were somewhat low. I think she will do some more blood work when I go in for the panel. But routine blood work never seems to yield much! I feel my celiac panel will come back negative, and then I won't know where to go from there!
Hello! So I went to see my doctor. She is ordering the celiac blood panel. I'm not sure which blood tests this will include. I have to eat gluten for 2 weeks as I have been gluten free for 11 days. Do you think that will be long enough?
I'm feeling rather upset as I don't feel I was taken very seriously. My doctor is very nice, but her explanation for my other symptoms is that some people are just more sensitive to their bodies. I hope this is not the case! I'm so tired and light headed. I don't want to feel ill my whole life!
I am also suspecting gluten intolerance. I have been gluten free for a week and a half and my GI issues have significantly improved. I have also been eating lots of rice, rice noodles, quinoa, gluten free bread, and cereals and just more food all around. I'm also feeling more tired than usual. I'm generally fatigued (I had to give up running a couple months ago because I was too tired and busy) but since going gluten free, I've notice a huge increase in my fatigue level. Friday, while I was supposed to be studying, I fell asleep at my desk! When I eventually woke up, I went to bed and slept for the rest of the afternoon! I think it must be related to withdrawal. I've been having many other symptoms of withdrawal such as headaches, increased dizziness, and increased pins and needles, chills, etc.
Perhaps it could also be a part of recovery. Maybe the body thinks "Yay! I don't have to be on guard anymore. Finally! Now let me rest and repair!" I am just guessing of course, but maybe you should be easy on yourself for a little while?
Hehehe! I can see how you would think that was made up! It would be a good name for a pit condition. Perhaps it is related to gluten intolerance then. I will be trying my best to get in to see my doctor tomorrow. Thanks for the reply!
Any time I try to talk to my family about this, they are unresponsive or change the subject. I understand that it scares them because of my eating disorder history, but I really need to get to the bottom of this, and I could use their support! For this reason, I would like a definitive diagnosis, but I am also afraid that my blood results will come back negative and then they really won't believe me! But then again, it really isn't about them, it's about my health!
I will call my doctor's office Monday morning when they open, and try to get my appointment moved up to either that afternoon or Tuesday morning. Hopefully my doctor will be more understanding than my family!
If my blood results come back negative, do you think it would be worthwhile to push for an endoscopy? Without going into too much detail, as it's quite embarrassing, I have many symptoms of malabsorption. I still follow the meal plan that I was discharged from the hospital with but I often end up eating more as I am hungry. I am 5'4 with a bmi of 20 and usually eat around 2500 calories a day. Which I would think is plenty for someone my size. I do no exercise, I used to run (which I love), but I have been too tired to do so over the past couple months. I'm always hungry! Can non celiac gluten intolerance damage intestinal villi as well? Is it common to react more strongly to gluten following a period of being gluten free?
I think it might also be a good idea for me to have my blood sugar, liver, pancreas and gallbladder levels tested.
I apologize for the length of this post, I have tried my best to condense it. For anyone who has the time, some input would be very much appreciated!
2 weeks ago, I finally got up the never to talk to my doctor about my chronic GI problems, which I’ve been experiencing for over a year and have been getting progressively worse, to the point where it is very uncomfortable to go to school or work. Among other things, she suggested eliminating gluten. I have been gluten free for a week and within the first day, my GI symptoms were at least 80% resolved! My other possibly gluten related symptoms are not however, and I have been experiencing what must be awful withdrawal.
I will be going back to the doctor next Friday. I always get nervous and hold back, as I feel I must be being dramatic. So I was just looking for some opinions. Do you think my symptoms could be consistent with celiac/gluten intolerance? Should I look further into this?
Here is a summary of my symptoms throughout my life, I am now 24 years old.
I was a very colicky baby and a very constipated toddler/young child. I developed severe asthma at 4 was constantly ill, including oral thrush infections. I “grew out” of my asthma at some point during childhood. At 9/10 I started having constant, bad headaches. I was sent to the eye doctor and for a test for various environmental allergens with a few minor findings. Finally I was sent to a neurologist and put on medication. I’ve had frequent nosebleeds throughout my life. For one period of time, nearly every single day. At 19 I developed severe carpal tunnel in both hands. I had a nerve conduction test done my result were like that of an 80 year old. I’ve had unexplained numbness in my leg and arm for long periods of time. I have been exhausted for at least the past 5 years. I’m often light headed, my heart pounds (particularly after eating), and my head spins. I’ve also been insanely thirsty for the same amount of time. My doctor said this was probably from the antidepressants I was on. But during the year I was off of antidepressant the insane thirst did not go away. I go from not being hungry to famished very quickly and get very dizzy and irritable. I also often feel like I have low blood sugar. I can’t tolerate cold. My nailbeds and lips often turn blue. I’ve had recurrent breakouts of pityriases (a skin fungal infection) for the last decade or so, that will disappear with treatment but reappear somewhere else shortly thereafter. My period has always been irregular, with skipped periods for no apparent reason. I’ve often had various GI complaints. I’ve been anxious my whole life and have had many panic attacks. At 12 I began suffering noticeably from severe depression and social anxiety, and began developing anorexia. I’ve been hospitalized because of anorexia 3 times, at 15, 18, 22. Because of this, I have often attributed my various symptoms to my eating disorder. But, I relapse very rapidly, such that I am only acutely ill for short periods of time. For the most part, in between my relapses, I have been at a normal weight, and healthy, and all these symptoms have persisted and are usually worse! For a long time I thought my symptoms were long lasting effects of having contracted mono at 19. Another theory I’ve had is that I’m very sensitive to the sun. I’ve also tried to convince myself that it is just normal to feel this way. I was hospitalized because of anorexia for the last time a year and a half ago, weighing about as much as a 9 year old. I was hospitalized for 6 months, and since being discharged a year ago I have been free of eating disorder symptoms, eating a balanced diet, not cutting out any calories, or food groups, and all around, in solid recovery. I felt ok, but gradually I started to feel more and more ill. One of the main reasons for my last relapse was because I felt so exhausted and shitty all the time. I’m fairly confident that my symptoms are not caused by my eating disorder history, or one would expect them to improve with time, rather than worsen. This time I will not be giving up, I want to get to the bottom of this. I want to live, and without so much suffering.
I’ve had some minor blood work done at various points, the last time being February, with few abnormal findings; somewhat low iron and vitamin D. By the time I go back to the doctor, I will be 2 weeks gluten free. Will there be any point in getting tested for celiac disease/gluten intolerance? I really don’t want to go back to eating gluten, but I supposed soon rather then later would be better. Is it worth it? Is there anyone who didn’t get tested who now regret it? Are gene tests readily available?