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
LADIES!!!!! OMG you have no idea how happy I am to find this thread! Where should I start?
I was diagnosed with celiac 8/09 and had a fibroid removed from my uterus (through my belly button) in 9/09. Two months after surgery, I was standing in the kitchen drinking OJ when I immediately felt like I had shards of glass in my urethra. I'd never been aware of my urethra or what it even did but let me tell you, I was FULLY aware after that. The pain was awful. Anyone I told, told me I was crazy.
Then I started getting UTI like symptoms. I was a UTI pro (lots of UTIs/yeast infection issues pre-diagnosis) so I knew something was up. I went back to my gyno 4 or 5 times and every test was negative. Finally I started looking online for celiac related issues and found interstitial cystitis. I was referred to a fancy urogyno who acted like I was an idiot for thinking that and diagnosed me with vulvodynia. I started PT and imipramine (up to 40mg, 50 was too much) and *on my own* started the low oxalate diet.
I kept trying to explain to doctors that FOOD was causing these problems and no one believed me. When I ate citrus, I was in terrible pain. Specific preservatives made my lady parts hurt. Sometimes it was immediate, sometimes within a few hours. When I eat white potatoes, I get a funky discharge (yup, we all just became best friends). Everyone thought I was crazy and I started to believe them.
I'm still convinced of the food connection (screw them, it's my vagina) and am having the hardest time eating. I don't want to eat. In fact, I hate eating. I never feel good after I eat and the food I do eat, doesn't appeal to me. I've lost a bunch of weight, my friends thought I had an eating disorder, and my long term bf got sick of having a sick girlfriend. Awesome.
I've been tested for colitis, refractory celiac, you name it. Everything is negative.
I'm ready to jump off of one of the many bridges in Portland. I am tired and don't want to live like this. My gi doc asks if I have hope, and if I drive but I am losing it quickly. It's been so long and I've lost so much I don't know what to do. This has affected every aspect of my life. I used to bake and I loved to entertain. Now I'm afraid of food and I feel like I can't do anything.
I tried to eat some almond butter (trying to add things back) and I've been pooping so much lately, my lady parts hurt. I have some kind of an abrasion on my labia (way lower, closer to anus) and I'm sure it's from the frequent bathroom trips. I have several trips a day and it's usually super loose. I went to the gyno today who said it looks like nothing but checked for herpes. Double score.
I was smoking pot to help with the WICKED nausea (I'm super barfy in the am after my first bathroom trip) and to help me eat (it really is that bad) but my GI doc recommended I stop because the withdrawl symptoms can cause everything I'm trying to avoid. He gave me peppermint pills which haven't done a whole lot but I'll stick with them. However, they do nothing to help me eat.
Celiac was easy. My mom and sister had it for years before me, so I knew exactly what to do and how to do it. HOWEVER!!! For whatever reason, I didn't respond well to a gluten-free diet. I've been dairy free for a long time as well but I don't know what to do.
I am so tired and so sad. I don't want to cry anymore. I just want my life back.
When I went gluten free, I experienced the most painful heart burn ever. For a week or two I ate rolaids and tums like they were candy. I had never experienced real heart burn before that. It was super intense but eventually went away. I think the severe diet change caused my body to freak out a bit.
I understand the "Is it all in my head" problem. Trust yourself. You know what's going on even if it seems crazy.
The diagnosis was fairly quick but dealing with other symptoms that are related or unrelated has been difficult. She prescribed imipramine and sent me on my way. Anything that I tried to mention she disregarded as crazy. All the food stuff, weird intestinal stuff, weird lady part pain and itching...she had nothing to say other than, you're nuts. I think the meds have helped but I'd love to take less or even discontinue them. They make me dizzy and my sleep schedule is all messed up. I'm going to try more acupuncture and Chinese herbs. I went to a nautropath but haven't been there long enough to tell a difference yet. I have my fingers crossed.
Similar situation here! I went gluten-free in August and was super excited when I started feeling better. Then around November, everything went crazy. It was like everything was making me sick. I started cutting foods out and noticed things that made it worse but not better. I have been down to so little, I've lost a lot of weight and still have no clue. Something I have noticed about the elimination diet though...don't count out foods unless you've TRIED them. For example, I ate brown rice and was soooo sick. I figured all rice was out but white rice is pretty good. Brown rice made me feel like I was going to vomit at any second. Now I live on white rice. Don't assume anything.
Good luck, let me know if anything works.
PS, I feel your doctor frustrations. I'm always tempted to call my first GI doctor just to tell him to go to hell. He basically laughed in my face. Won't be going back to him, ever!
Holy crap! I had no idea there were so many people with both celiac and vulvodynia! Sorry to say ladies, but I'm so glad I'm not alone. This had been a nightmare. I just said a bunch of bad words before the word nightmare...I am trying my best to figure out some kind of solution/plan for all of this but it is painfully slow. I was diagnosed with celiac August of 09, had a fibroid removed September of 09 and a few months later my body went crazy. I slowly started cutting foods out and kept finding foods that didn't work but not enough that are safe. The weight loss has been a little scary. I have been following the low oxalate diet and of course staying gluten free but I haven't seen an improvement. If anything, it seems going gluten-free has made things worse! My intestines are constantly inflamed no matter what I eat. AND I get weird reactions on my lips too. They feel like they are super chapped at times or I get a hive/bump/thing that doesn't hurt or itch but it happens immediately after eating something that I can't pin down...when I eat certain foods, my lady parts itch. It's almost instant. I am 99% sure it's sugar. I only eat a few kinds of fruit. When I mention that to doctors they think I've lost my mind.
I don't know what's going on with me exactly but I have recently come across the low oxalate diet. I had a serious reaction to brown rice. Serious. However, white rice is very different. Not perfect, but VERY different. This diet hasn't been perfect. I still react to all food, but understanding the differences in the types of foods has been helpful.
I finally tried white rice and it seems to be ok. Brown rice was a big NO but white seems to be better. How interesting!
But I have a different question.
For those with vulvodynia...and those with other food weirdness, how fast do you know you've eaten something bad or wrong? How quickly do you react? Depending on the food/issue, I react to vulvodynia foods almost immediately. I talked with my favorite physical therapist today and she thought that very was weird. She didn't say she didn't believe me and she didn't look at me like I was crazy (which is why I love her) BUT she thought it was strange because "the food hasn't even reached the stomach yet". She wondered how that was possible. Does anyone else have a super fast reaction to food?
I was diagnosed with celiac in August 09. September I had a large fibroid removed from my uterus. My doctor thinks surgery may have tipped off the vulvodynia. In some ways, I've had vulvodynia-like symptoms for about a decade but it for sure got worse once I went gluten-free and had surgery.
Since the oh so fun symptoms started I have eliminated a lot of foods from my diet and nothing has gotten better. I started taking imipramine about 1.5 months ago and haven't seen any improvements. Granted I wasn't at 40-50mg for that long but nothing good has happened.
At my recent doc appt I asked if there was anything else I could be doing, should be doing, someone I could talk to, etc. and she said, "Nope, I think you've got it all covered"...hmmmm....so I started looking online for more info and found the low-oxalate diet.
Has anyone tried this? I don't know what to eat. I feel like every list I find is different which is what happened with the interstitial cystitis diet.
Does anyone have a good, trustworthy link? I have no idea what I'm doing but I'm determined to figure something out! I am so stinking hungry it's driving me nuts. Any help would be appreciated
Holy, holy crap. This makes perfect sense! I've had sensitive teeth my whole life. My mom had soft teeth, her mom had soft teeth...I was also on antibiotics for 8 years as a kid which made my soft teeth even more soft. I've always had bad teeth (multiple root canals, lots of cavities as a kid) but have recently (within the last few years) been working on flossing and brushing. I floss almost every day, sometimes twice a day and brush twice a day. I still have so much plaque! I've had the same crown/root canal worked on three times and its acting up again! Honestly, it seems about every 6 months I go back for the same tooth. With all the random food allergies I've been having lately, I didn't even think about how that would affect my teeth.
I've been gluten-free since August 09 and have eliminated a lot of other food trying to figure out what else is going on so I know I'm not getting enough vitamins and minerals. A recent blood test showed super low D, not sure about calcium.
This post was so helpful! Thank you so much! Other than increasing my Vit D and calcium, what any other suggestions?
Holy crap, this is my worst fear! I can't believe this actually happened. I'm so glad you confronted her!
I would go to her house, hold her down in front of the computer and MAKE HER READ ALL OF THESE POSTS!
This is beyond unacceptable, beyond! I'm a little crazy about my food, where it is, where it came from, what it's packaged in...and heaven forbid someone try to touch or snack on my food...I go from fine to psycho in 5 seconds.
I immediately imagined the scene from Mean Girls with Lindsay Lohan when she jumps across the table. That would have been my response.
I tried an elimination diet but it didn't work very well. I kept cutting things out but nothing got better and then all food became a problem. I'm down to so little food. I've lost a lot of weight but I eat constantly. It just goes right through me. Someone had a helpful suggestion about looking at low stomach acid something or other...I feel like I'm getting closer but taking two steps back at the same time.
Citrus for sure. One day I drank orange juice and immediately felt like I had shards of glass in my urethra. That's what made me look online and I found info about interstitial cystitis. I started following that diet and went to the uro-gyno who totally blew me off and said it likely wasn't IC even though I have many of the symptoms. I've had some success with physical therapy but the diet stuff is killing me. I cut out soy, citrus, salt/pepper/anything spicy, but still ate gluten-free cereal and gluten-free bread that didnt contain those ingredients. Then I cut out beans of any kind but still ate peanut butter until I realized they are legumes...I still had wicked digestive issues (constantly in the bathroom), my lady parts hurt, and I peed all the time! Then I cut dairy and processed grains like cereal but still ate rice and quinoa. Then I cut all grains and only ate chicken, eggs, fish, shrimp and some veggies and almond butter.
Recently, after both my GI doc and regular doc recommended trying to eat grains again because I'm losing wt and hungry all the time...I tried to eat rice again. It was DELICIOUS! I ate brown rice cereal and tried coconut milk. I ate brown rice wraps and quinoa. I might have gone a little overboard. I think I was so frustrated I just ate and ate and ate. I had to stop eating it because I felt so unbelievably sick. My stomach is mighty unhappy and I have a constant barfy feeling. I'm back on the animal and veggie diet but it's taking a long time for the grains to get out of my system.
I thought it was IC, then I thought it was leaky gut, maybe candida...I was on antibiotics for 8 years as a kid and had a lot of yeast infections as a teen/early 20s. I have no idea what's going on but I know I'm not crazy. I just need to find the right doctor who can figure it out.
Believe me, I know how crazy this sounds but starting in December, when I eat certain foods...my vagina hurts. At first it was just my urethra area but now I can't tell what's going on. First it was just with citrus then it became most foods. I went gluten free in August and had a few months of simple diet changes (simple only because I already knew so much about going gluten-free and live in a gluten-free friendly city) but now I'm down to so little and still have funky digestive stuff and weird pain in my lady parts.
Again, I know how crazy that sounds. I've been to an allergist, GI doctor, uro-Gynecologist and my regular doctor and no one has a clue. They all think I'm nuts. The allergist did a bunch of skin food tests and they ALL came up negative. I don't know how but he said it's not an allergy. It's something else he just doesn't know what it is. The GI doc was an ass and had nothing helpful..other than to try oat milk before he realized I was celiac...right. I recently had an ultrasound of my kidneys and blood work done. Kidneys, thyroid, and liver are all fine. So far I've stopped gluten, dairy, fruit, sugar, soy, all preservatives....I think that's it. I eat chicken, salmon, shrimp, eggs, broccoli, carrots, potatoes, red peppers, snap peas and almond butter. This diet isn't perfect as I still have not so fun symptoms and can't control my funky tummy but I don't know what else to eat!
I have an appt with a new GI doc who has a celiac background on Friday which I'm super excited about but I'm wondering if anyone has had a similar experience with funky vaginal/urethral pain.
oh, ps, I had a large fibroid removed from my uterus right around the time of my celiac diagnosis.
Any info would be GREATLY APPRECIATED as I am ready to drive my car off a bridge with frustration.
I've had a really hard time with the elimination diet and haven't been feeling better. Cutting out gluten was fairly easy since I knew so much about it already but about three months after going gluten-free, I started having weird reactions to citrus. I cut that out and then started following the interstitial cystitis diet because so many of my symptoms seemed to be pointing to that...I cut soy, caffeine, alcohol, fruit of any kind and noticed some things getting better but overall digestion hasn't. I would get this weird super low abdominal pressure which has seemed to disappear (thank god!) but I don't know exactly which food was causing that feeling or even if it was a food related thing. I also stopped eating dairy and all grain hoping to figure out what the problem ingredient was that I was still consuming but I haven't had any luck. I also cut out all preservatives. I eat chicken, salmon, shrimp and eggs for protein and broccoli, snap peas, carrots, red peppers and almond butter. This isn't perfect because I still have digestive issues and feel barfy a lot but I don't know what else to eat. I recently tried to eat brown rice again (doctor told me to try) and also tried tapioca flour...holy crap was it delicious but I was so unbelievably barfy for days that I never want to eat it again! I also avoid corn because it seems to go through my body with lightening speed.
I went to an allergist and every test came up negative! I was so surprised because I thought something would come up positive. He said whatever is happening isn't an allergy so it must be something else...like other autoimmune stuff?
What does your allergist recommend? I went to a GI doctor who I almost strangled because he was such an insensitive a-hole about the foods I was eating and not feeling better. He didn't really have any suggestions on what to eat...just what not to eat...which is most of what I'm eating now...so now what?
I have an appt this Friday with a new GI doc who has celiac experience so I'm super excited and hope to get some answers.
Oh Jason! I know exactly how you feel! I was diagnosed in August of 09, right before I had surgery to remove a large fibroid from my uterus. Fortunately, going gluten free was fairly easy for me since my mom was diagnosed 8 years ago and my sister about 3 years ago. I already knew a lot about the diet and I live in Portland, Oregon which is an amazing place for weird diet crap. Shortly after my diagnosis, I started having other strange symptoms possibly related to interstitial cystitis...but it's still up in the air. As a result, I've eliminated so many things from my diet...I'm constantly hungry, bitchy, and miserable. I love food and used to be 180lbs. I started working out and started losing weight and was super happy eating whatever gluten-free food I wanted but now since I have to restrict so much, I can't workout out because I started losing too much weight and have a hard time controlling my blood sugar. I'm down to 145 now and I don't like it. It happened so fast it scared me a little and people ask what's wrong with me or why I'm trying to lose so much weight...hello? if I had any control over this I would eat ice cream all day long. I feel like I'm losing my mind. Being gluten free is one thing, but now I can't have dairy, any grain, salt of any kind, rice, soy, citrus, preservatives...ugh, listing it all makes me sad but you get the idea. This has been incredibly difficult on my relationship with my very loving boyfriend but I'm frustrated and hungry all the time. We can't go out to eat and I can't drink anything other than water and the occasional cup of chamomile tea. The food I eat isn't good. It doesn't taste good and it doesn't fill me up like food used to. It's hard for other people to understand what it is like. I'm so fortunate to have my mom and sister who understand all the weird food stuff, the depression and anxiety, the frustration, ALL OF IT! There is so much to deal with other than the diet. I get it, we all do. I try to focus on the idea that there must be an answer to what's wrong with me right now. I just need to find the right person to help me figure it out.
I agree with everyone else that you need to first get your other health stuff under control but give yourself a break. Being gluten free isn't the end of the world but it is a life changing diagnosis and you need to give yourself time to adjust to that. I try to tell people that eating those foods just isn't an option anymore and I need to accept it and move on. If you're allergic to peanuts do you eat them? No. It's that simple in my mind. That doesn't mean I'm not a miserable jerk most of the time because I'm hungry all the time...but I'm working on focusing on what I can control.
I know this is a lot of rambling but I feel for you. I know your frustration and I'm so sorry that you feel this way. Just know that there is hope, there is a way to live the most incredible life ever. My best suggestion is to find other celiacs who understand. No one else will. They've been so understanding and make me feel less crazy.