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
Thank you for the responses! I am so shocked that my doctors never told me any of this until yesterday, 4 and a half years of being gluten free and I might not even have Celiac?! That is impossible to imagine!
A PCP did the original blood test, and a seemingly reputable Celiac doctor here did the endoscopy that diagnosed me, then I switched to another GI who pretty much told me I'm a hopeless case a few years ago. I have an appointment with another GI in a few weeks for another opinion, if it is Chron's I don't want to waste time and money on a pill cam where I can't get biopsies.
Also, coffngirl, I am on digestive enzymes and probiotics but they don't seem to help either :/ I swear I've tried everything with no result, after my last endoscopy/colonoscopy two years ago though I pretty much gave up on ever feeling better, here is to hoping that a good GI can figure it out, even if it means something as awful as Chron's.
I'm beginning to wonder if it is possible I have been misdignosed with Celiac. I was diagnosed in August 2009, so 4.5 years ago, and have been gluten free ever since plus Paleo the last two years. I've been working with a natural medicine type doctor but he sent me back to the Gastroenterologist yesterday because my Ferritin is 0 along with low B12 and D and high C-reactive protein which indicates inflammation. Also, I supplement Iron, B12, and D, and have been supplementing a higher amount of iron since my tests came back a few months ago. I also suffer from alternating D and C (they alternate every few months or so), bloating, bad abdominal pain, and gas.
I have only continued to get sicker since my Celiac diagnosis. I have been told I just have IBS on top of Celiac, but my GI told me yesterday that IBS wouldn't cause the malabsorption we are seeing. Along with the IBS I also have a very weak immune system (constant colds etc. plus a low natural killer cell count), joint pain, fatigue, and numbness/tingling in my hands and legs. Also, I'm only 22.
Discussing my original Celiac results with my GI yesterday, the only thing elevated on my bloodwork was IgG, which she said isn't very specific to only Celiac, and my endoscopy results showed inflammation and lesions, but the villi were perfectly fine. My last endoscopy in August 2012 showed doudenitis, gastritis, and inflammation in the small bowel, but all were biopsied and found to be fine. I also had a colonoscopy and everything was found to be fine.
Based on this, my doctor thinks that I may have never had Celiac, and actually have Chron's that they somehow haven't caught yet, so I am going to do a pillcam endoscopy at the end of the month to check for it. I am also going to consult with a GI who seems to specialize in Celiac to get his opinion. It is crazy to think I may not actually have it!
Has anyone else experienced this? I feel like I've tried every kind of medicine, every kind of diet, and seen every kind of specialist, yet no one knows what the problem is. Sorry for the long post, but any help would be appreciated!
Wow so many questions! I think that if I do decide to go ahead and really take the Celiac re-diagnosis seriously I might try this for a month or two and then get my blood work redone. I have had headaches since eating gluten again, but my stomach is in such awful shape I can hardly tell the difference there. As it stands now though, I have an endoscopy and colonoscopy scheduled on the 24th, and since it takes forever to schedule these things I don't want to wait anymore. Also, here are my original blood results if anyone is interested:
My doctor said that they have now replaced the Gliadin IgG test because it's not very reliable, and this is one of the reasons that he suspected my tests weren't right. I actually cried over possibly not having Celiac, because giving up gluten is a way of life for me now and knowing that that's all I have to do to feel better is comforting. But, at the same time, I've never gotten better, and over the last two years I've only gotten worse. I'm only 21, and while I was sick for 6 years before diagnosis, I should have healed from my Celiac damage pretty quickly, especially if I had no villi damage. I think it's highly probable that I have Celiac and something else, but I'm really fighting against an IBS diagnosis at this point because I've tried all the recommended diets and medications for IBS and nothing has helped. Here's what I've tried so far:
High fiber and low fiber diets and fiber supplementation
Xifaxan for SIBO
Apriso for reducing inflammation
Low dose anti-depressants for IBS
Muscle relaxers that release in the intestines for IBS
The specific carbohydrate diet
And I've been on the Paleo diet for 10 months now, it helped me feel great for about 3 months then everything went downhill again.
Eliminating all possible sources of gluten and cross contamination.
An elimination diet that showed me no results.
Also, I've had my thyroid checked multiple times and it's normal. I have remained anemic since diagnosis though, and my recent blood tests have shown I am also now deficient in Vitamin B12 and Vitamin D. I eat paleo, so my diet is kind of centered around meat, which means my iron and vitamin B levels should be pretty high but they aren't. I am now getting shots to correct the vitamin B levels, but my doctor refuses to give me a complete vitamin/mineral workup.
I think that's everything, let me know if you have other suggestions. Thanks! Amber
I never felt any better when I went off gluten, I have only gotten worse for the past three years. And honestly I don't see any difference eating gluten now. I was diagnosed by a blood test and endoscopy, but I just now found out that there was no damage to my vill, but the biopsies showed inflammation in my small intestine so they diagnosed me with celiac. I might just have celiac and something else, but not eating gluten has never helped me to feel better. So, I'm having my endoscopy redone and having a colonoscopy, eating gluten again is just kind of a trial for me.
I went to the GI on Thursday and told him i had never actually felt better after being diagnosed celiac three years ago and he went through my tests and told me that it really didn't look like I had Celiac. So I'm getting my gets redone and I'm back on gluten for a few weeks. I know we all dream of gluten filled bread and pasta, so this was pretty exciting news to me. I think my tastes have changed though, while everything I've tried has been good, it really hasn't been impressive or anything like what I'd built it up to be in my head. I just thought this might be interesting to share with everyone!
Thanks guys! If I do the colonoscopy I will definitely push for the endoscopy too, I'd feel better having all my bases covered. Hopefully the medicine will work, and I won't have to deal with any of it! Also, thanks so much Cyberprof, I did some research on the microscopic colitis so now what my GI said makes sense. That must be what he was thinking since he told me we need to take biopsies of the colon and large intestine. We had done a barium X-ray to test for Chron's and Colitis but everything came back fine, so I was surprised he still thought it was something wrong with my large intestine.
So, I was diagnosed Celiac 3 years ago by endoscopy but I've never received any relief from my symptoms (and yes, I am positive I haven't been eating gluten). I started the Paleo diet 9 months ago and everything was great for 4-5 months and then one day it just stopped working. When my Celiac problems first started about 10 years ago, it was always diarrhea, but after a few years it became constipation, now I've been back to the diarrhea stage for about 4 months.
Yesterday, I went to my gastroenterologist because I'm so fed up I don't know what to do anymore, and I was thinking it was time to have another endoscopy to see if I've healed at all, but he told me that people with Celiac often get autoimmune disorders in their large intestine so my problem is a large intestine problem, rather than small intestine like Celiac. I've never heard of this before so I was surprised. He gave me Lialda and said that if it doesn't work within two weeks they are giving me a colonoscopy.
Here's what I've tried before:
Low dose anti-depressants for the pain
Low dose intestinal muscle relaxants
Barium X-ray with no findings
Tested for food and airborne allergies- no results.
I also have extreme bloating which annoys me more than anything.
I'm just so tired, Celiac was supposed to be the answer to my problems but nothing has changed, so I feel like it makes more sense to look at my small intestine before assuming it's something else.
I've posted on here a few times in the last week, as I've been seeing a lot of doctors to try to figure out what is going on with me. I've been gluten free for 3 years and Paleo for 7 months now. About 3 weeks ago, my leg went totally numb, and since then it's stayed that way plus tingling/numb hands and feet. It took me 3 doctors, but I finally found one who ran some tests and found out I'm vitamin B12 and D deficient. She then referred me to an immunologist because I get some sort of cold/strep/whatever almost every 2 weeks since I've been sick, so the immunologist ran a metabolic panel, tested my IgA and IgG and my ANA and everything came back fine, except my ANA which was 1:80, but the doctor said it's a low positive so we will wait to see if it develops before we do more testing. About a week ago I started having awful joint pain in my knees, ankles, wrists, and elbows, and I've just been insanely tired. My stomach has also been terrible for about a month now. I'm only 21 and I feel like my body is just fighting me right now. I feel like I'm 80 or something, and the tests have been inconclusive so I just don't know where to go from here. Does anyone have some suggestions, advice, or maybe just uplifting words?
I've tried digestive enzymes and probiotics, a few different brands, but nothing worked. I was working with my local pharmacy to try different enzymes and things to restore my gut, but still no improvement. I haven't been tested for SIBO, I was treated for it and thought it was the solution to my problems but I didn't see any results.
I did have my nutritional levels checked right after diagnosis, along with an osteoperosis panel, and I was fine except for anemia which I corrected with iron supplements. When I got diagnosed, my doctor said I was a "weak positive," so I don't know why I feel worse now. I'm going back to the doctor today and I'm going to get a full nutritional panel done, I'm also going to meet with an allergist to get tested for that, and hopefully I can meet with my gastroenterologist and get another endoscopy done. Thanks everyone for your help!
Thanks for the reply, I did cut out cheese for about 6 months but noticed no difference, so decided to add it back in. I am getting an allergy panel done soon though so hopefully that will tell me if I actually am. I completely forgot about refractory sprue, I think it's time to go back to the gastroenterologist and get my blood levels rechecked and another endoscopy. I saw my gastroenterologist last year and he put me on a course of antibiotics for possible bacterial overgrowth in my intestines and did a barium X-ray, but he found nothing and dismissed it as IBS. I was so mad after that that I just decided to take matters into my own hands and change my diet until I was able to find something that worked well enough for me to go off daily miralax. I'm only 21 so I thought I would heal fast, which makes the fact that I'm getting worse even harder for me.
I have been gluten free for nearly 3 years now and I'm pretty sure I'm only getting sicker. I have changed to a Paleo diet, which helps, but my stomach still isn't working like normal. I have tried eliminating every food group and don't think I'm allergic to anything else so I don't think that is the cause.
Last Wednesday I went to the doctor because my leg felt like it had fallen asleep for 3 days, it's still that way and my foot, hand, and forearm are affected too. I was incredibly worried that it was MS, but the doctor tested me for B12 deficiency, Vitamin D deficiency, and did a thyroid panel. I got an email from her today that my B12 and Vitamin D are low. The vitamin D may be from only eating cheese and no other dairy products, but it still doesn't seem right. I'm probably going to get a full nutritional panel because I suspect I'm not absorbing any nutrients from my food. This is strange to me, because after I was diagnosed Celiac my gastroenterologist did a full nutritional panel and I was only lacking in iron. Like I said, I'm paleo now and I rarely eat processed food at all. It's all fresh meat and produce, so I know I'm not eating gluten from anywhere. So why am I getting sicker? I'm only 20 and when I was diagnosed my villi were only slightly blunted, so the doctor said I should return to normal soon. I'm beginning to wonder if I was actually misdiagnosed. Anyone have any ideas?
Thanks for the advice guys! Surprisingly my appointment actually went really well. My doctor ordered some tests to figure out what is causing my neuropathies, which is so nice because I was really getting tired of that being dismissed as normal. My leg has been numb for 4 days now, which definitely doesn't seem right to me. I also thought I had had allergies for the last month or so, but she checked me out and told me I was actually sick (before I mentioned any symptoms) and got me some medicines. And for my constant sickness she referred me to an immunologist, which I didn't even know existed, so I'm happy for that. I think 2 things made the difference- first, I knew her brother in law, which I'm sure helped my case, and second, she had a private practice, rather than one with 20 other doctors, and I think that being able to run things on her own schedule gave her more time to listen to me. I understand that doctors are overloaded and they have a ton of patients, but at the same time, I'm paying them an extremely generous amount of money for their five minutes, so I deserve to be listened to.
I'm going to see a new doctor tomorrow and I'm SO tired of doctors not listening to me I just can't take it anymore. I've already been diagnosed Celiac, so that's not the problem, but I've had a host of issues since then and no one ever seems to give me answers. I think that since I'm 21 doctors just blow me off thinking it couldn't be anything serious, I have no idea. Tomorrow, I'm going to a doctor who has good reviews and is a friend of a friend, so I'm hoping she will listen to me, but I need advice on how to really make her listen to me. I've been diagnosed Celiac for three years, here's my symptoms since:
Continued stomach problems
*have all become slightly better with the Paleo diet, but not resolved
Constantly sick with colds/bronchitis/etc. almost every other week
Two kidney infections
In the last month I've had 2 nerve problems that my doctors just dismiss as damage.. even though there's no reason for it
I just want someone to take me seriously. I work really hard, I'm going to school, working part-time, and trying to get into law school, and it's really tough to keep up with everything when you're constantly sick. I'm tired of being treated symptom by symptom, and I need someone to try to figure out if everything is somehow interrelated. I feel like my immune system doesn't work, and the nerve problems I've been having really scare me. I figured you guys know a thing or two about dealing with doctors who think you're crazy though!
Just an update since you guys have been so helpful to me!
I went to the OB/GYN today to get a sonogram to check for cysts etc. and everything looks good, but my doctor suspects it might be endometriosis. I NEVER would have suspected this, I was so busy looking at my stomach problems to get a diagnosis, but I've reviewed a lot of information and it seems highly likely that this is the source of my pain. I am going to get a laparoscopy in about a month so that I can get an official diagnosis, and I am really hoping that since I am young it will be easily treatable. I think one of the scariest things for me to hear is that I may not be able to have kids one day, but I am trying to look at the positive! I hope this might help some of you out there that are having the same symptoms as me.
Thanks for all of your help! I was diagnosed the day before I moved to college, then I lived in the dorm for a year and moved into an apartment with a brand new kitchen (no one had ever used it before) and i bought completely new pots, pans, utensils, etc. So no cross contamination issues there. I am very diligent about reading all labels, I make my boyfriend brush his teeth and mouthwash before he kisses me, and I've checked all of my vitamins. I really don't think I'm being glutened though, because when I am glutened I get very tired and really can't think straight, plus all of the stomach issues.
For my thyroid I have just started taking iodine, I am currently working with a naturopath so he isn't technically allowed to diagnose illnesses, just treat them. I've never found a good regular doctor but I do need to get a little more information on my thyroid. The strange thing is that my T4 was high (indicative of hyperthyroid) but my T3 uptake was low (indicative of hypothyroid). So I'm very confused about what that might mean. My naturopath is actually related to me though so I trust him to figure out what is going on with me. I am also on supplements for pituitary support, and liver, kidney and gallbladder function. With the thyroid dysfunction my emotions are really just all over the place (anywhere from depressed to extremely anxious and stressed) my heart races all the time and I have a lot of trouble sleeping at night.
As for my diet, I'm definitely trying to eat less salad and raw veggies, because I've realized it definitely contributes to my stomach problems, and it doesn't seem to be well digested. I also try not to eat many grains because they bother me in large quantities, though almost everything does lol. I haven't looked into fructose malabsorption yet, but I think it will be my next step if things don't get better soon. I haven't had a follow up with my GI since I had my barium study so I need to do that so we can see what is next. I know I need to take him all of my blood test results too so he can get an idea of what's going on.
I really don't understand why I am more sick though because I was told I have "borderline" celiac. My immune response was abnormal but not extremely high, and my biopsy was abnormal but my GI said there wasn't much damage done to the villi. This is extremely confusing to me because I had been sick for at least 6 years before receiving a diagnosis.
I also went to my gynecologist on Friday because sex has also become painful for me in the last few months, he checked for infections and everything but that all came back good. I am going in for a sonogram tomorrow to investigate the possibility of endometriosis or ovarian cysts (which seems unlikely since I've been on birth control for four years). He said that if there is something wrong though it should be fixable since I am young. I'm only 20 and the possibility of endometriosis is very scary to me, I just want to be better by the time I am able to have kids. Does anyone have any experience with this? I may start a new topic on it.