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
Diagnosed Celiac by biopsy 1.5 years ago. After diagnosis & gluten free diet my body started to go haywire. Everyone chalked it up to my gut was healing, and that it was a good sign. Just wait it out they said. It will get better they said...
Then things didnt get better. Everything has persisted, and some things have gotten worse.
Weight gain (going from 140lbs to 170lbs. 31 year old female, 5'10") Controlled diet, under 1300 calories a day. Active city dweller without a car. Walk 10-15km/day. Minimal processed foods. No cross contamination (believe me, I know, I will vomit profusely with a spec of gluten.)
Swelling of hands and feet (and sometimes face)
Extreme lethargy, especially in the legs (having trouble going up stairs & lifting feet)
Ridges on my nails
Anxiety (which fluctuates)
Perodic night sweats
I have persisted with my doctors, and was told last week that my thyroid levels were within the normal range, and that the only thing they could do to help me was put me on antidepressants if I wanted. I obviously dont want antidepressants as I dont think I'm depressed. I have a big problem voicing myself in doctors appointments, and often will end up in tears. I dont think thats helping them take me seriously. I feel overwhelmed. I am at the end of my rope right now. The only other tests they scheduled me for are a heart echo and a lung xray (they wanted to make sure my lethargy/shortless of breath wasnt heart/lung related.)
I had previously had IV iron infusions, and I get a monthly B12 shot.They say my iron is good enough right now. My doctors do not tell me any of my test info or levels. So I have no idea what they are.
It took them 3 years to diagnose me Celiac as my only symptoms prior to diagnosis were malnutrition and anemia.
Has anyone ever experienced anything like this? Any suggestions on how to get them to take me seriously? Everything I google comes up thyroid.
Thank you all for your kind words! I couldnt have imagined going through all this alone, and without the community. We are all a shoulder to cry on, and a hand to life eachother up. I dont know how many times I came searching to find out if I was alone in a symptom or problem!
Gemini: The options for gluten-free food (especially gluten-free bakerys at local farmers markets) is great, but the culture of not having a car, buying everything close by, and going out for a lot of meals and social functions is hard. When I live three doors down from a french bakery that I used to buy fresh baguettes at daily, it gets a bit tiresome smelling the ovens baking from your backyard. The culture of eating work lunches out almost every day, and going to restaurants and bars weekly with friends has been the hardest part. The feeling of being left out was one of the things that saddended me the most. But its high time I get over my self pity party, and embrace this shit! I think I was making it harder on myself, and I need to get out of that path of self destruction. Last weekend I decided I wanted to eat and drink with my friends, so we had a big Cinco De Mayo party at our house and enjoyed traditional tacos, grilled corn, marguritas, and had a blast. Did anyone notice that everything they ate was gluten free? Of course not, and I certanly didnt hear any complaints!
Now to figure out how to get back into that bikini before summer...
Its been 5.5 months since diagnosis, and on a gluten-free diet. It has been a rocky journey. Pre-diagnosis my only symptom was iron deficiency. After giving up gluten I developed stiff joints, severe weight gain, red blotchy skin, acne, crazy food cravings, headaches, and very severe reactions to being glutened (projectile vomiting for 6+ hours). All this while coming to terms with giving up a food group that i loved, and a huge lifestyle change for a young woman living in a big city. Needless to say I have been miserable. I dont even think miserable is an approptiate word to derscribe it. I was furious at my doctor, covinced I would have been better off never being diagnosed, and generally very mad at the world.
However, I think I've reached a turning point. I have been able to move my hands and actually hold a toothbrush when I get up in the morning, my insatiable hunger has disipated, my weight seems to be decreasing, and my anxiety seems to be lifting.
I know there are a lot of you struggling, and I just want to give you hope that it will get better. It may not be something that you can see day to day, and man can it get worse before it gets better, but things will improve. Its not like taking a pill and having feeling better in a few hours, but it is working. Slowly, but it is. This is by far the hardest journey of my life thus far, but I think I can see the sun shining through the clouds.
I hate to tell you, but thats exactly the symptoms I get from CC now. The first time I thought it must have been stomach flu, then it happened again.
If its a very light amount of cross contamination I get nausia. Moderate cc and I am vomiting. If I have consumed actual wheat I am deathly ill with stomach flu symptoms for hours. It's miserable. My body literally wants every trace of gluten to get the F out! I hope for your case that it was just the stomach flu, cause its not fun.
I had iron infusions today, and waited several hours after to try to see my GI doc who was on rounds. Unfortunately I was turned away and the earliest booking for an appointment with her is in over a month. The attending in the GI ward told me to stick to my diet exactly as it is untill I see my doc, but the thing theyre the most worried about is the swelling in my hands, which apparently they will bring up with my doc asap. I'm exhausted from my infusions and am going to go crawl into bed and stay there as long as I possibly can.
I dont regulatly eat any processed foods, and our kitchen/house is completely gluten-free. I am still eating dairy, no oats. Regular day subsists of coffee yogurt and 2 pieces of fresh fruit for breakfast, left over dinner for lunch, and home cooked meal for dinner. Ie baked salmon with quinoa and 2 veg. Snacks are fruit, yogurt and nuts (per my nutritionist) We buy organic when possible, and all meats from our local butcher. Source corn tortillas from a local Tortilleria and use that as my substitute for all bread. I am a big foodie, and have always cooked all our meals from scratch, there's ner a processed food in our house. I take a gluten-free birth control, but that's my only meds. Lived a normal healthy life until all this went down. Don't think it was food poisoning, as hubby ate the same food as me all day. Could be a bug, but other than being severely dehydrated and tired today I'm fine. I feel like I wake up with some new weird issue every day. It's like celiac roulette.
Thank you everyone for your responses. I hadn't even considered that I could have more than one thing wrong with me. I just feel so disheartened and alone. My family doctor told me it was all in my head and that I should consider anti depressants. It's just hard going from feeling fine to having my body revolt on all aspects.
I have been anal retentive with being gluten-free and the glutening yesterday I believe was from a Thai curry I ate that most likely had some oyster sauce in it. I just never expected such a strong response from being glutened. Man was my body mad! I have an iron infusion on Tues, and my GI doc is on rounds that day in the GI ward, so I will definitely get a nurse to made sure she comes to chat with me.
Thanks for listening guys, it makes me feel less alone in this!
I had NO gi symptoms prior to being diagnosed with Celiac. In fact, I had a rock solid stomach and never had tummy issues even when sick etc.
I have been Gluten Free for 90 days and in those 90 days I have gained 15 lbs (have never been this fat in my life), have worse acne then when I was a teenager, have severe joint pain, wake with swollen hands face and feet, so much so that I can't pick things up. I went outside yesterday for an hour wearing leather gloves and fleece mittens and my fingers got so cold they were purple and I feared frost bite.
And for the first time yesterday I got glutened by some thai food. I then spent 5 hours alternatingly vomiting voilently, and spending the rest of the time on the toilet (or worse, being on the toilet with a bucket between my knees). I have never in my life been so sick. My body was convulsing and I couldnt even move. It was worse than the flu, and worse than food poisoning. It was the most miserable night of my life.
So riddle me this. HOW IS THIS A GOOD TREATMENT?! The side effects of my treatment are WORSE than the problem! (I had iron deficiency anemia). I was essentially fine before, and now my life is a living hell. This is a miserable exhistance, and I dont know how I am supposed to be happy with this, or how I am expected to stay this course. My daily life was MUCH better when I ate gluten, this is now a miserable exhistance. I want my old life back.
I had my infusion today and it was easy as pie! I worried for nothing, and it went perfectly smooth. I brought juice coffee and snacks which were such a good idea, thanks guys! They had trouble getting the IV in, but the third time was the charm. They gave me 200ml of Venofer. They did a test dose of 20 over a half hour and took my vitals every ten minutes. I didn't react at all, so they didn't have to give me benedryl. After my test dose I was fine so they infused the rest of the bag over 2 hours, then followed with a half hour of saline. I had no reaction whatsoever, so after four hours in a recliner with a warm blanket and my iPhone and ereader they sent me home. I came home and took a nap, and I feel great! My appetite is a bit strange, and I have a funny taste in my mouth, but no side effects so far. Will keep you posted if anything changes. I am scheduled for another bag in two weeks, then a month after that. Hopefully this gives me a boost, I would really enjoy being able to walk the dog an take the stairs again!!
I would absolutely try a drug. I would love to be able to eat whatever I wanted again. I am a foodie, and this restrictive life long diet sucks. As I understand it, the IL-15 drug trials were fast tracked due to the sheer volume of people affected by celiac. I am hopefull they pass clinical trials, and is fast tracked to fda approval. If so, I will be travelling to the US to get some! I would give anything for a croissant...
Hi Diana! Thanks for your reply.
My B12 is non exhistant as well. My extreme fatigue didnt really start untill the B12 dropped (I lived with the anemia for almost 2 years before it really took its toll.) Theres quite a few things I am low on, and am waiting for my appointment with my deitition to discuss how to get the rest of my nutrients up.
I wish my iron infusions were happening sooner, but hopefully I can get other things up in the interim and feel a bit better. I havnt had any withdrawl that I can discern, but its hard to tell as my symptons before gluten-free were fatigue, lethargy, irritability, mood swings and forgetfull/foggyness, so in essence I am a bit used to that already! Its hard not having any GI symptoms. I am being super anal retentive about contamination and such, but still fear that I am injesting unknown gluten and harming my body. I dont want to be come a person whos afraid of food!
I am q 29 year old female who has suffered from Iron Defency Anemia for 2+ years before finally being diagnosed with Celiac two weeks ago. My diagnosis was severe malnutrition due to Celiac. It has effected my B12, calcium and other nutrients as well. My only symptons of Celiac have been my nutritional defencies. No other GI symptoms.
I am slated for a bone density test this week, but my Iron Infusions are not set for another 2 months. I am feeling extremely exhausted, and can barely function, however they dont seem to feel like my iron infusions require fast tracking. Anyone else have such low iron and wait that long for infusions? How long did it take before your body started absorbing iron from food again? (FYI my iron has consistantly been at 1 for the last year + no improvement what so ever with large dose oral iron.)