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
Thanks everyone, I really appreciate your thoughts! I know a great MD who is also naturpathic in the area - I'm hopeful that if I can get my ex onboard with taking her their for testing that he will start to understand the issues. The biggest hurdle will definitely be getting him on board so he doesn't undermine any diet we put her on.
I dread the idea of my daughter growing up with the pain and discomfort I did when we could pretty easily change it for her. Thanks again!
My almost 33 month old daughter's doctor told her father today that he is concerned that she is malnourished. She hasn't gown at all in a year and she was only 25% to begin with - now 3%. Like any mother I am really scared.
The doc said the likely cause is malnourishment but she eats - and not just junk food. She gets lots of fruits and eggs, beans, meats etc. She eats a full breakfast before daycare, eats another breakfast at daycare and then has 2nds and 3rds of meals the rest of the day. At school she's known as an eater.
Gluten problems are my first instinct because I have them. I have never tested possitive for celiac but I had a laundry list of symptoms before diagnosis and her issues remind me of my childhood. She also has chronic ear and sinus infections, bread cravings and soft diapers.
My biggest concern is that because I am not technically celiac that this issue won't be taken seriously. I am going to need some sort of doctors note to get the daycare (and my ex husband) to follow any special diet and am scared I wont be able to get it for intollerance. I was gene tested years ago and had 2 copies of an intollerance gene and have always responded great to the gluten free diet.
Any parents in similar place? What did you do? Are there tests I should be asking for?
Wow, I doubt that someone isn't addicted to something just because the withdrawal isn't going to kill them. Everyone's brain chemistry is slightly different and different people can become addicted to different things. Many people in my family are alcoholics, they cannot function without alcohol. My father had to be medicated when he detoxed because his liver and other organs were such a mess. He couldn't walk for 2 days. I have never been addicted to alcohol so its hard for me to understand what that would feel like but I'm not going to tell him that he wasn't addicted and he just liked it a lot.
I myself experienced gluten addiction. Growing up i would have bread cravings so bad that it altered my life. I would bring bread in baggies to school for snacks. I would wake up in the middle of the night and eat all of the hot dog buns. When the first GI said she thought i had "sprue" I went home and read about it and said... "oh, that can't be it... I would die WITHOUT bread" Finally I got so sick that I hoped I would die so I stopped eating wheat. I felt like I had the flu for 4 days and I had 3 panic attacks, my heart was pounding out of my chest. I was told by my doctor that it was withdrawal symptoms. I felt nuts... but on that fourth day I woke up and felt like a totally different person. I felt like I could fly. I've been gluten free now for 4 years and it's made the biggest improvement in everything. I do cheat every now and then if I go out to eat somewhere and I'm sure I will get glutened anyway... the bread has very little appeal for me now. Addiction is gone. I do crash afterward though, i get very grumpy and depressed for days.
I've heard doctors are diagnosing people now with gluten addiction, maybe we will hear more about it in the future.
How freaky, you are having the exact same symptoms I have had for a long time. Please let me know if you learn anything new!
My MD told me a few months ago that he thought the dizziness had something to do with a dumping syndrome where you stomach doesn't empty right causing too much blood to go to the stomach to aid digestion. I'm not sure if its right but my dizziness does get worse when I eat a lot. I've been having TMJ treatment from chiropractor and special dentist for years and its helped with the jaw and neck pain but not for the shoulder, chest and side. I did recently get diagnosed with a couple of ulcers (they were bleeding a little and hurting a lot!). I can tell now that the chest, back, shoulder and side pain definitely get worse when the ulcer hurts so I've been thinking they may be related. My GI doc thinks I've had the ulcers for a long time so maybe they were causing the pain all along.
I just don't know what connects them all. I'm starting to believe its bacterial overgrowth or candida. I have been keeping a small food log and I can tell that the pain, dizziness and palpitations get a lot worse after I eat cheese but I just can't stop eating cheese. I have been diagnosed with a milk allergy so maybe its just the cheese alone, but I don't think so. My dairy cravings get worse every day so I'm thinking that the bacteria inside me is living off dairy. I plan on cutting out dairy to see if that helps.
I also looked up B12 in my vitamin book and it helps with nerve pain. YOu will be more prone to pain if you are deficient which most people with any food allergies or intolerance are. Shortage of B12 also causes fatigue.
I was diagnosed with Candida shortly after I first learned that I was gluten intolerant. Actually I asked my MD about that first and was told that candida was BS. By accident I found out about the wheat issue and going gluten-free cleaned up most of my troubles except fatigue, dizziness and sinus issues I decided to do the candida diet on my own after battling my doc on it. I never felt better in my life. People would come up and tell me how good I looked (no dark circles, great skin, more energy). It was fabulous.
I started slacking after my honeymoon and eating more sugar and corn chips and rice. After a few months the dizziness and fatigue returned so I found a new allergist. He is an MD allergist who prefers a natural approach. He diagnosed the Candida and gave me difulcan. I tried the diet and difulcan again but didn't last as long as the first time. Its a very hard diet and you need to be VERY committed for it to work
My advice is to find a new doctor if yours doesn't believe it or just try the diet to find out. Its the opposite of stopping gluten. If you eat nothing but meat and veggies... no sugar or carbs or dairy for a couple of days and it makes you very sick... flu like... then you have candida problems. When it dies from lack of sugar it makes you sick. When I did it I thought I was going to die... I must have had it bad.
I wish you luck if you go for it because it takes an extreme amount of will power. I have been eating lots of dairy for the last few years even though I have been diagnosed with casein allergy and I think I need to do it again. I feel awful but I can't gather the will power. Every day I tell myself I will start tomorrow. I wish they had candida support groups around here! GOOD LUCK
I wonder sometimes if my husband and family are afraid to learm much about it because they feel then they would have to take it more seriously. I try to explain how serious it is but always give up because it just doesn't seem to get through. I've tried asking for them to read about it but they never care enough to get past the first few pages. They have admitted they think a lot of it is in my head, maybe because bone pain and bowel problems dont show on the outside? I'm not sure why they act that way but it sure hurts sometimes. Hopefully it will pass with time.
I need to find a new doc but am totally confused as to what kind to start with and need some advice. I moved to a new area and have a BAD history with getting good help so I've been putting off finding a new doctor. I have been gluten free for about a year with super results, the issues I need help with are ongoing dizziness/lightheadedness, energy level and steadily dropping low blood pressure.
I never got an "official" diagnosis and I am NOT willing to go back eating gluten to get one. My blood tests were negative but I had been gluten-free for months before I was tested so I will never know if it was accurate. I am afraid to try a GP because my last one said she never would have suspected gluten since I wasn't anemic. Even though I had come to the office multiple times with malapsorbtion, vommiting and bloating... explaining that it seemed much worse after I ate bread - she said bread doesn't make you sick... has to be coffee or something. I had and allergist say she would run the blood tests for wheat realated illness... to find out later she just ran test for wheat allergy. I found a Naturopath who seemed to listen at first and caught the Allergist's mistake with the gliadin test, but wouldn't test me for anything until I spent months using her expensive Mercury cleansing program (which is dangerous and my levels weren't even that high).
Anyway, I generally (like many others here) don't have much faith in doctors and don't know where to start. What kind of doctor do you see for dizziness and low blood pressure? I am afraid I will start fainting soon if I don't see someone. Should I just try a new GP? I have no referrals around here and don't know where to start looking or even what type of doc I should be looking for. I thought maybe some of you had similar symptoms at some point and would have some advice for me. Any advice is super appreciated!
Wow, that is super interesting. I just posted on a "tell your story" thread that I got really sick when I first went gluten free. I mean really sick, extreme fatigue, dizzyness, heart palpitations, nausea and horrible shaking cold sweats. I ended up in the emergency room for dehydration and they told me they didn't know what it was. (the ER staff talked to my doc who likely said I was somatic). They diagnosed me with lymphodemia because my glands were swollen, but had no explaination. I feel like I may finally have the answer. Thank you... I've never heard of such a thing before.
All of my life I had digestive symptoms, lactose intollerance also irritability and anxiety. In my early twenties stomach trouble turned downright painful with horrible gas and cramping. Diagnosed with Irritable Bowel. Devleloped worsening allergy symptoms and multiple food allergies. Mid twenties muscle cramping and nerve pains began. I was a mess.
My doctor told me repeatedly that it was all in my head and that it was just part of getting old. Said I had arthritis like it's normal for a 25 year old to have bad arthritis. Advised me to take 4 ibuprofen every 4 hours as needed for pain. I got used to it. Slept proped up with pillows so I wouldn't move and wake up in horrible pain.
Late twenties body pain and fatigue got out of control. My tummy troubles went from bad to worse. I was scared, I had 3 panic attacks. My doctor asked me to see a therapist for somatization disorder. I was terrified that I was losing my mind. I was worried that I would lose my job if I didn't get better. My friends were angry with me for always being sick, said that I was a hypochondriac. Started getting acid reflux bad, noticed that it was worst after eating bread and went to the doctor. Doctor told me that it had to be coffee that bread cant do that. It got worse, I knew it was bread. Talked to my allergist and she advised me to quit wheat immediately.
I quit eating all gluten in February 2006. Felt really sick at first like a drug addict. On the third or fourth day gluten free I woke up and couldn't feel my arms and legs. Swore I had finaly lost my mind. Then I realized that I could feel them, they just werent in pain. Turns out I had such bad bone and muscle pain that I thought I went numb when they stopped. I started feeling really good, everyone said I looked better than ever. Lost a whole bunch of water swelling right away, turns out my baby face was from food intollerance.
Started sneaking gluten around my birthday and was ok. Snuck more for my wedding and then a little more while moving. My feet started aching and my muscles got tighter, but I kept sneaking. Then the pain returned in full and the tummy issues came back. Immediately went gluten free again and haven't gone back, I wil never forget the pain. Much worse now that I haven't had it for a while.
Blood tested for celiac about a month after going gluten free the first time and was negative. Entrolab tested 2nd time and had two copies of same gluten intollerance gene but no celiac genes. My mother had lots of teh same problems as me. Was miserable and depressed her whole life. Developed cancer in her 30s and again in her 50s. It was too much for her and she took her own life.
Im so happy everyday to have a special diet and know that I will never end up like my mom. Just wish I could have figured it all out 7 years ago, it may not have been too late.
Before I was diagnosed Gluten Intolerant I tried the Candida Diet from wholeapproach. I never felt better in my life. It was very hard and I only made it about 4 months but it was worth it. I made the assumption that was the whole of my problems and went back to eating gluten around the time of my wedding. Big PAINFUL mistake. Another upside is that after the Candida diet, gluten free doesn't seem so hard. Stick with it 100 percent and the cravings won't be so bad. Good luck!
I am new but wanted to respond to this older message because I have the same pain when not gluten-free. I found a wonderful book called The Triggerpoint Therapy Workbook. The massage that works best for me on this is to sit in a chair leaning forward with my arm loosly haning down... if you can press up allong the inside of the thick muscle at the back of the armpit and massage with long strokes it will help a lot. (The muscle that causes it is under the outside edge of the shoulderblade) It hurts like hell to rub there but eases the pain in the long run. The book is great but there are also massage therapist who specialize in triggerpoints. I have to work on myself because I am too ticklish.