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
Just wanted to say that I went to a GI doc, who says that if I feel sick while eating gluten, and better off it, then I am most likely gluten intolerant. Like I needed him to tell me that He wants me to get an endoscopy to check for reflux damage and he's going to do a biopsy, but I haven't scheduled it yet. He advised me to go back on gluten for a week before the test so that he can see if anything is going on, and I feel like I can't schedule in a week of being sick into my life! I'm terrified to do both (the gluten and the test) so wish me luck!
Well, my allergist is doing the "Celiac Panel" blood test... tried to look up what it entails, but I had already got the blood drawn and turned the paper in, so I don't know exactly what it was. It's a start, anyhow. I'm preparing myself for the almost certain negative it will show. Going to call the GI doc and make my first appointment there regardless. The best/worst part was when he (finally) gave me the diagnosis of Chronic Fatigue Syndrome, told me to cut all caffeine, (I drink one cup at 5 am, on days when I drag myself to work and go to sleep at 9:30 pm, so it's not keeping me up) and my doc says he cut out caffeine in January and his headaches have gone down significantly. I do get migraines occasionally, but worse than that is a chronic daily, never ending headache that just will not go away. He says he is now a lot more sluggish during the day but has less headaches and sleeps better. Coffee's not good for my acid reflux anyway, so I'll just give it a shot. Not sure how the fiancee is going to like it And the doc also said to make sure I get exercise and for my fiance to make me do it.... but he doesn't exercise either! Me and exercise do not get along well. I have never found it enjoyable, never have the energy (or lack of headache) to do it, and I swear I can get into my Wii Fit for 3 days a week, for 2 weeks, then I get the "flu" again and I lose it. This has happened countless times... this "flu" I get every 2 weeks ruins my life
I'm hoping I was eating enough gluten the past few weeks for the test to even have a chance to show anything. I'm quite discouraged by the CFS diagnosis and don't see these head/face aches going away anytime soon
That's very encouraging! I'm having major anxiety about going and presenting this endless list of symptoms to my doctor. The only thing that's helping remotely is knowing my fiance will be there with me, and can back me up when I say I cut "carbs" and felt somewhat better, then reintroduced "carbs" and got worse again, then cut gluten and felt better, then reintroduced and felt worse than I have all along. Well, of course everyone here at the forum has been amazing and that helps too. I'm 3 hours away from my appointment and am trying to stay away from the Xanax!
No matter what he says, or what the bloodwork shows, I'm going to a GI doc, and I'm NOT eating gluten ever again!
Thank you for this info, I have it all written down, but I'm wondering how this doc is going to react to me coming in there saying, "This is what I think I have and these are the tests I want." Oh well, if I don't get satisfaction there, I'll move on! He is an allergist, but I was planning on making an appointment with a GI doc anyway (for reflux) so I'll try there too.
Oh, Mary, I feel the exact same way. If my blood tests come back normal (if the doc will even DO the testing in the first place) I am going to lose it! I'm going on the diet regardless, too, and luckily my fiance is amazing with support, my brother is as well, but my parents... not so much. What you said sounds just like something they would say to me, and it doesn't help the mental state at all. It's good to know there is an online community of support though!
I'm new here, too Mary and I'm going to my doc tomorrow to beg for testing. As you said, I too almost WANT to be diagnosed with something so I know what is wrong with me. I just made a post of my own, so I won't go into all the details yet, but you are right about this site (which I have spent a lot of time on this past week as well), these people are amazing!!!!!! Best of luck to you, and here's to *hoping* we have gluten issues!
I'm very new here, but have been reading around and find that I can relate to so many stories! This is going to be long, so I apologize now for that! I am female, 29 years old, not overweight, not diagnosed and have not been tested, but have an appointment scheduled with my Allergist/Immunologist tomorrow, where I will suggest that I get tested for gluten allergy/intolerance/etc. The reason I suspect this may be my answer is that I've been through ten years of primary care docs, specialists, tests, scans, surgeries and frustration, with no good diagnosis, and my symptoms seem to line up with so many things people have said here. My main complaint is severe fatigue, with headaches/migraines being the second worst part, among many other things which I will get into later if anybody wants to read that much.
They have tried to explain this all away by diagnosing sinusitis/rhinitis (allergy tested negative with the skin tests, yet I can't tolerate being off Claritin, or I itch head to toe) and correcting a deviated septum (twice), when that didn't work we moved on to sleep apnea (which runs in my family) and I do have it and it's treated with 100% compliance using an oral appliance (I could not tolerate C-PAP), and when that didn't solve the fatigue my doctors were and are totally stumped. I also have been diagnosed with migraines, PMDD, bioplar disorder and having cold sores with a negative test for HSV 1 & 2. I also recently became aware that I have acid reflux, which I am thinking about going to a GI doc for (tho my PCP suggested OTC Zantac which I have been taking), and wondering if it would help going to one for this gluten problem as well???
Anyway, my other symptoms that have been going on for a long time include insomnia, anxiety, depression, general malaise, daily headaches, bloating, burping, the big "C", mouth ulcers (not like the HSV kind, with a recent frequency), heart palpitations, psoriasis, very cold feet and toes, I'm always hungry (and try to eat "right" which meant including tons of whole grains, but never really feeling better), had extremely low ferritin level 3 years ago with no explanation, and I am ALWAYS getting "sick" (what feels like getting a cold or virus every 2 weeks, which is no way to live, and frequent bacterial infections as well as subsequent yeast infections).
Recently a whole new spectrum of things have started, as well as a lot more stress has been added to my life. A few weeks ago I started developing extreme dry mouth, which encouraged me to drink more, in turn making me run to the bathroom all the time, which also included urgency. I feel foggy all the time and like I have low concentration and feel a bit spacey at times. The anxiety and depression have gotten markedly worse, as well as new joint pain and swelling which my doctor had no explanation for. I feel so much worse in the morning when I wake up, sometimes with anxiety and nausea (which I can't possibly explain whether the nausea is caused by the anxiety or something else, and I'm not pregnant). One thing that I have noticed is a heightened and more sensitive sense of smell, which with my sinus problems, usually I can't smell anything. I have been having mood swings, visual disturbances, chest burning and tightness, heartburn, random sweats and chills, sporadic abdominal pain, been weak and shaky (which seemed like hypoglycemia to me, but my sugars are fine, no diabetes), and a lot of flu-like symptoms without the nasal problems it would come with (sneezing, dripping, extreme congestion).
I have been tested for diabetes and thyroid issues among many other things, and always the tests come back within the normal ranges. The reason I suspect a gluten allergy is because during that diabetes "scare" with the frequent urination and dry mouth, I cut carbs back to see if it would affect anything. And sure enough, it did. When I cut carbs (consequently cutting out all my favorites, like whole wheat pasta, bread and cereal), my urinary symptoms went away and I lost 5 lbs within a week. After getting my non-diabetic results, I slowly added carbs back in, but not those with gluten, only rice and potatoes, etc. Still I felt alright, not great, but alright. Then last week I got a "cold" and got angry and felt bad again and gave up the gluten free eating and yesterday I had 3 slices of bread and some pasta. I woke up this morning feeling like I had the flu ten times over and I was hit by a mack truck. My headache has been unbearable. So, I called and made an appointment with my allergist and I'm crossing my fingers that he hears me out on this.
Does it sound like I'm going in the right direction here? No matter what my blood test results say, I'm going back to gluten free ASAP, because I know I found some relief when I cut carbs and that it can't be a coincidence!
How interesting! I'm new here (untested and undiagnosed, hoping to change that at the doc tomorrow), but have been diagnosed with bipolar in the past (currently untreated) and wonder if going gluten free could help with my mental troubles as well. This forum is amazing!!!
I'm new here and have been reading around the site, but this post caught my attention. I also *seem* to get dry mouth from eating gluten!!! I am untested (and therefore undiagnosed), and just doing some research before my doc appointment tomorrow. I thought I was crazy that eating "carbs" made me have dry mouth... maybe it wasn't "carbs" after all!!!!!!!!
This will be my first post after reading over this site for a few days. I felt compelled to reply since my symptoms are very similar to those listed by bellysbetter. I am going to my allergist tomorrow to ask about getting tested, but I am already suspecting that I have some type of intolerance to gluten and am going on the gluten free diet no matter what the test results say!!! I can only hope for some minor recovery, since my main symptoms are extreme fatigue and headaches, which are both debilitating when in combination with each other! This is by no means all the symptoms I have, but this is not the place for me to launch into all that. I do not look forward to what lies ahead with all the other sensitivities that could come along with this!